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Wednesday, May 9, 2007 2:11 PM CDT
Ahhh....sorry it's taken me so long to update, but Tessa did have her surgery on May 1st. She is back up and running at her normal pace. The surgery went well. She was a bit congested the days prior to the surgery, so I was really worried they would postpone again, but the took her back. I spent the first half hour waiting for them to come and tell me they weren't going to do it, but they didn't. That was a relief. I asked God to not let them take her back if they weren't actually going to do the surgery. He was obviously listening. Her surgery was supposed to be 7:30am. We arrived at 6am, when they asked us to. Dr. T was supposed to arrive at 7am, but as we were waiting in the day surgery room, the nurse came in and said "I have bad news." My heart sank...thinking they were going to tell me Dr. T was sick or something. She said "Dr. T woke up late this morning, so he won't be in for awhile longer." So, it only prolonged my worry about whether they would take her back or not. I didn't mind mind.
When he arrived he was flustered about waking up late and then the otoscope in the room wasn't working and he forgot to mark her ear. He was just having a morning. I said to him "Don't worry about rushing...we aren't worried about it." He's extremely cautious, though, so I was confident he would do a good job.
The nurse called us every hour to keep us in the know. She was a very slow talker and I wanted to tell her to get to the point, but she had to introduce herself each time. It was funny and frustrating all at the same time. I wonder if it's something they are trained to do to keep parents at ease, so they don't think everyone's rushing around the operating room.
Dr. T came up while I was getting lunch at about 12:30 and Stephen talked to him. She did great. Then they took us down to her room, where we'd get to see her. She spent about an hour and a half in recovery b/c they thought she looked very pale (when doesn't she) so they didn't want her to vomit. They gave her some more nausea medicine. Then she got back to her overnight room at about 2pm to an anxious mommy and daddy. Okay, so maybe I was the only one who was anxious...I don't know. I was very glad to see her. She slept for another hour and a half, then woke up and cried for a bit. Stephen held her and cuddled with her. He's so good at that when she needs it. Then she threw up on him, which wasn't so fun. That was the only episode of that, thankfully. She was pretty whiny and fussy all night. She fell asleep right after she threw up and slept for another few hours. Then we just relaxed in bed and watched tv for the rest of the evening. Grandma and Stephen left before she woke up, so I was surprised when she asked where grandma and daddy went. I didn't think she even knew grandma was there. She as in a good amount of pain for most of the night and requested pain medicine when she needed it. I slept with her until 1am (a privilege I've never had before) and then moved to the fun hospital mommy bed. It was very nice to have her "need" me like that. We don't necessarily encourage that, but this was a bit of a different situation and we both were glad to have each other. During the night, she would reach out and touch my arm, just to make sure I was still there.
Dr. T came in at 6:45 the next morning and told us that she could be discharged. We ended up leaving at about 10am, after a bath and taking her IV out, which was quite the challenge. She didn't want anyone messing with it at all. When she first woke up for her anesthesia, she wanted it out asap, but they wouldn't take it out, and then she didn't want them to touch it the rest of the time.
She bounced back pretty quickly on Wednesday and went back to school on Thursday. She didn't require any medicine at all after Thursday morning. School was a great distraction for her. I was a little leery of sending her to school so quickly, but I saw that she was very whiny and acted like she was in pain when she was bored and had time to think about it. Now she still tells me not to touch her surgery, but she lays on it and I can touch it and she doesn't flinch at all. Her hair is starting to grow back already as well. Her activation is scheduled for May 24th, 2 days before our plane trip to Colorado. She'll be sporting her new BTE's (behind the ear processors) to Uncle Chewy's graduation. I am looking forward to that day, since she won't have to wear the dreaded harness anymore. I asked her if she wanted to stop wearing her harness and she said no, but I think she just doesn't realize there is another option. We actually have all the equipment already, so I am going to let her look at it and see how it feels on her ears. That will be interesting. And we won't have to worry about the airport fearing that we'd strap something harmful to our child. I would hope they wouldn't think that, but you never know these days.
Neither one of the girls have been on a plane before, so they are both excited. Tessa said on Thursday (the day she went back to school) that Mrs. Barnes said it was May. "That means we get to go on a plane now, mommy!" We've been telling her that we're flying to see Uncle Chewy, Aunt Shae Shae, Grandma and Papa in May. She's quick to make the connection, I guess. So, now we're telling her at the end of May. :) Selah is super excited too. Neither one of them can contain themselves when we mention it. As for us, not sure the plane trip is going to be a whole lot of fun, but it'll be worth it.
That's it for now...just wanted to update about her surgery. We feel so blessed to have this surgery done and are really looking forward to her activation day!
Much Love,
Sara
Thursday, April 26, 2007 9:32 PM CDT
It's been an eventful few weeks. This will likely be a short update, since it's late and I'm exhausted. But, I did want to let everyone know that Tessa has a new surgery date, and it's not far away at all.
She is scheduled for surgery on May 1st (next Tuesday). However, she is congested again! I'm hoping and praying that it's gone by Tuesday. It really started full blown this past Tuesday, so I can hope right? It doesn't seem to be nearly as bad to me as her cold last month. In fact, I haven't seen her nose run at all. Her teacher mentioned that she sounded congested on Monday. But, because she goes to school, I don't see it at all. By the time she comes home, it's gone. She isn't acting sick at all either. In fact, she's really been pushing the limits at bedtime. I've been encouraging her to drink more water, pumping in the vitamin C and using saline nose drops with her, in hopes that will kick this thing out by the weekend. My mind would rest much better seeing for myself that it is gone. So, we could definitely use prayer that Tessa's immune system would kick into high gear and get this cold outta here, pronto!
It's been a bit of an interested ride. Susan, the surgery scheduler, is now gone from the practice. Dr. T is leaving at the beginning of June, so we were hoping that we would get a date before then. If she doesn't have surgery on Tuesday, it will likely be August or September before she is able to get it. I called last Tuesday (a week and a half ago) and got Susan voicemail. Someone called me back to let me know that Susan was no longer working there. This person had no information about Tessa at all. She didn't know that Tessa was supposedly "first on the list" for cancellations. However, she did sound extremely helpful. We planned to talk at Tessa's post op appt that Thursday. The Wed. in between, we saw Tessa's audiologist. She told me that Susan turned in her two weeks on Monday and the someone who had no clue about what this woman does, told her to get her things and go. Needless to say, lots of people who were waiting for insurance approval are likely livid because Susan was the only one who could really do that at this practice. At Tessa's appt that Thurs to see Dr. T, he did tell us that he just saw a patient with a raging ear infection, so we could have their surgery slot, which happened to be May 1st. It's been an interesting few weeks, to say the least.
At Tessa's audiology appt, they switched her over to a new programming strategy called Fidelity 120. It is technically not approved for children in the US yet, but her audiologist sees no problem with putting her on it. Children are doing amazing with it. It will help Tessa to appreciate music much more. It simulates having "up to 120" electrodes, however they are "virtual." I really don't understand the ins and outs of it, but her teachers are happy with her progress with it and she has not shown any regression, which was a possibility. It's so hard to see the slight changes in her because we are with her so often.
I know this journal is a bit disjointed, but just wanted to add a quick Tessa-ism.
This week at school they are learning about pets. Her teacher picks out jokes and idioms and they learn about them as well, since kids with HL don't tend to pick up on stuff like that quite as quickly. This week, the joke is "How does a cat shop?" The answer is "A catalogue." In the car on Wednesday, Tessa was telling me this joke. It took a few minutes for me to get what she was saying. I finally remembered seeing the joke in her newsletter from school. So, I played along of course. We both laughed when she told me the answer. Then she proceeded to say "How does a chicken shop?" I said "I don't know" and she replied "A chickenalogue!" She must have gone through every animal she could think of...ducks, pigs, cows, birds, alligators. It was the funniest thing I've heard in so long and she sure got a kick out of making me laugh so hard. Her teacher was thrilled that she was "playing with language" like that. Needless to say, she's getting funnier everyday.
Much Love,
Sara
Sunday, April 1, 2007 1:35 PM CDT
Lots of info for today (and no, none of it is an April Fools joke). I'll start off with the bad news...
Tessa's bilateral surgery was scheduled this past Friday (March 30th). She has been SO healthy this season. But, the Saturday before her surgery, her nose started running. It didn't stop all week. I called on Thursday evening to let them know and the Dr.'s assistant thought it was likely due to the pollen. I think I knew in my heart her really had a cold, but was really hoping it was due to the pollen count (it was a record breaking year here in GA). So, we got up bright and early to be at the hospital by 6am. They prepped her for surgery. I did notify them that her nose was running. They seemed to think she was fine. I told Dr. Todd that her nose was running and he checked her out with all of his sophisticated instruments. He deemed that she was healthy enough for surgery, which did surprise me a bit.
They took her back and in my mind I thought "Wow...they are really going to do it." I let myself believe that they were really going to do the surgery. Stephen and I went down to the cafeteria to get some breakfast and one of the other parents came down and told us that they were looking for us. I knew at that point that they were cancelling her surgery. We went back down to the surgery area and Dr. Todd came out and showed us the intubation tube the used in her. There was yellow yuck in it and he told me that he was not comfortable with proceeding. So, her surgery was cancelled, after her having the anesthesia and everything. Needless to say, Friday was a hard day. Tessa took it like a trooper and at least now we have an idea what it's like for her coming out of anesthesia without pain. She did really well, though was of course groggy for a bit. We got out of the hospital at about 9am.
It was really hard on me to be prepared to stay overnight and then to finally let my guard down and believe they were really going to do it. I felt guilty, too, as though I should have pushed harder about the runny nose too. I just casually mentioned it and figured they'd find out if it was too bad during their examination of her. Really, though, it was just congestion (no fever and no chest involvement). Now, after thinking about it, I am glad they didn't do it. I think that the chances of exposing her inner ear to the virus leads to a greater risk of meningitis, which is of course, something we don't want to have to deal with. So, after a few days to process the information, I do believe that it was a bit of divine intervention. At the time, though, it was hard to be so ready and prepared for the surgery to have it taken out from under our feet. Tessa did ask about her "other CI" a few times, but overall took it in stride.
The biggest frustration is that Dr. Todd is switching practices in two months. He told us he wanted to wait a month and then try again (thank goodness she didn't have an ear infection because the wait after an ear infection is 3-4 months). If there were no surgery slots open, he wanted us to call the next practice and schedule with them. Of course, waiting a month means another round of bloodwork (which traumatized Tessa more than going to the hospital and being put under anesthesia). When I called his assistant, Susan, the reschedule, she said there were no surgery openings available. However, there is a possibility of a cancellation on May 8th. So, she should let us know by the end of next week whether that date will open up or not.
After thinking about it a little bit, I realized that May 8th may possibly be the date of one of our friend's daughter surgery. Remember when I talked about Tessa's friend L (just b/c I don't to post their names on my blog without permission)? Her mom, A (what I will call her), and I are friends. In the beginning of February, L experienced facial nerve twitching and refused to wear her bilateral implant. L has already had a reimplant on her original implanted side and now her bilateral side has failed and they don't know why. They are questioning whether it a physiological issue with L or a device failure. They can't do the integrity testing because L is not cooperative (likely because it's very uncomfortable for her). Regardless, something is going on with that implant. A originally didn't want to reimplant her, but the last time I talked to A (last week sometime), she said that they were now considering it. I'm thinking that when Dr. Todd announced he was leaving the practice, they decided to go ahead and schedule and then make their decision and cancel if they chose not to go ahead with it. Regardless, A knows about the possible "cancellation" hope for us, so if it's them, I feel terrible for putting them in this bind. I don't KNOW that it's them, but I suspect it might be. No one would possibly cancel that early, unless they were in a similar situation to L and A. So, we shall see what happens. I really hope A and her husband don't take Tessa into account when they are making their decision. When I told her about all of this, I really had no inkling that it could be them until I thought more about it. So, now we're in a bit of a bind. I'm not sure how to approach this situation at all.
I did call his new practice and asked about scheduling something, but they don't know anything about his arrival, aside from the fact that he is moving to their practice, so they won't schedule anything until the end of May. So, we are looking at a possibility of a 3 or 4 month wait. That is one of the things that really threw me into a tailspin of frustration and anger on Friday. Of course, I have no one to be angry at, but the situation just made me angry (given that Tessa has been SO well and just happened to pick up something the week of her surgery). Again, I'm glad that we didn't proceed with the surgery, especially after thinking about it. I do believe that God was protecting her from something, though I don't know what exactly.
So after that bit of frustrating news, we get to do it all over again sometime (and hopefully go through with the surgery). I'm hoping this will allow us to go get Tessa's BTE (behind the ear) processor mapped and on her before her new CI gets activated so she gets more used to the BTE. I'm not sure if that's going to happen, though, as we were planning on using one of the processors from her surgery for her right ear (the one that currently implanted). I doubt they will allow us to use that processor before her surgery date.
Now, on to the good news. We had Tessa's annual IEP last a week and half ago. I will just say that I'm impressed with Tessa's progress. I was pretty shocked to see how far she had progressed in the last few months (though I've known she's been doing very well). If you will recall, she was still a ways behind expressively in December. However, these tests are different tests, so you can't really compare them. They have highlight different strengths and weaknesses. Here's the quick rundown of the tests her school performed. The standard score measures children her exact age and 100 is the exact average of those children. The range that is considered average is 85-115.
ACLC: Assessment of Children's Language Comprehension (tests receptive language)
Vocabulary: 48/50
2 critical elements: 100%
3 critical elements: 100%
4 critical elements: 90%
This particular test highlights Tessa's auditory skills. Critical elements are different characteristics. 2 Critical elements would be them asking Tessa to pick out the "red car." 4 ce would be asking Tessa to pick up the "red car with an open window and a flat tire."
PPVT-III (Peabody Picture Vocabulary Test)
Standard Score: 90
Age equivalent: 3 yrs 6 mo
This was her worst score on all the tests. When I told Jennifer (her private speech therapist who specializes in CI children) she immediately said "It was the PPVT wasn't it?" She said deaf children tend to do really bad on this test because much of the vocabulary is "incidental language." That is language is just picked up from hearing other people talking. Deaf kids don't pick it up quite as easily as hearing children. For example, Tessa missed the word "fountain." She, of course, has the ability to learn what the word was, but has little to no experience with that word. The likelihood that she has heard it used incidentally is pretty low, even. Deaf kids learn much more from direct teaching.
EVT: (Expressive Vocab Test)
Standard Score: 111
Age Equivalent: 5 yrs 3 mo
This test shows Tessa's strength in single word vocabulary (basically she just named pictures that she saw, I believe)
I will preface this one by saying the average standard score for this one is 10, not 100.
TACL-3 (Test for Auditory Comprehension of Language, 3rd ed)
Vocabulary-SS 13, AE 5yr 3mo
Grammatical Morphemes-SS 11; AE 4 yr 6 mo
Elaborated Phrases-SS 13; AE 5 yr 9 mo
Total: Standard Score 115, AE 5 yr 9 mo
Grammatical morphemes are really what we are working on a lot right now. These are basically the grammatical parts of our english language (i.e. plurals, tense endings, etc.) These are a bit difficult for Tessa because of her articulation. She is definitely improving a lot in this area, which is obvious to me, given the fact that she is still in the above the direct average of her peers, even given she's only had 2 years, 2 months of language.
K-Bit (Kaufman Brief Intelligence Test)
Verbal- SS 99; AE 4 yr 7 mo
Nonverbal- ss 108; AE 4y 10 mo
Composite- SS 104
K-SEALS (Kaufman Survey of Early Academic & Language Skills)
Vocab- SS 98; AE 4 yr 4 mo
Numbers, Letters, & Words - SS 128; AE 5yr 8 mo (obviously this is her strong suite)
Composite- SS 115
Expressive Skills - SS 112; AE 5 yr 1 mo
Receptive Skills - SS 116; AE 5 yr 4 mo
PLS-4 (Preschool Language Scale -4th Ed)
-Auditory Comprehension, SS 88 - AE 4yr 3 mo
-expressive communication SS 87 - AE 4yr 2 mo
-total language SS 86 - 4yr 2 mo
Strengths were quantity, qualitative and spatial concepts, where/why questions, analogies, and categories
Weaknesses were time concepts, describing, past tense, passive voice, some trouble with generating items in a category, similies, semantic absurdities (which is a higher level language skill)
Her SLP (speech therapist at school) did mention that this test on goes up to 6 yrs and Tessa is starting to hit some of the higher portions of that in certain areas, so they likely won't give it to her again next year. It looks like she did struggle a bit more on this one, but it also looks like a much more comprehensive test to me. There are definitely things she is still missing and most of them are grammatical issues.
SPELT- Strengths were prepositions, present progressive tense, possessives, pronouns, copulas, present tense
Weaknesses were plurals, past tense (regular and irregular), though she is making progress on this.
She is still delayed in what's called "pragmatic language." This is social language that is used to communicate needs, desires, and feelings. We are progressing in that area, but she is still quite a bit delayed in that area. It's hard to know whether that is the reason she is socially immature, or if her social immaturity is contributing to her delays in that area.
She is extremely intelligent and memorizes things quickly. She picks up new words that are taught to her and uses them immediately. Mrs. B said they taught her the verb "object" and she was using it 1/2 hr later. That's not exactly a 4 yr old word, but she was using it. It doesn't take her long, if the word is taught to her. So, I have no doubt that her strengths will outweigh her weaknesses. Honestly, if she didn't have the "label" of hearing loss, she likely wouldn't receive speech therapy through the school system (for language, but she would still receive it for her articulation I'm sure). What I'm saying is if she were a "typical" child, she wouldn't qualify for language intervention. Basically, she is caught up in her understanding and use of language. All 4 yr olds have strengths and weaknesses.
So the news from her IEP is good. She has attained almost all of last years goals and now has new goals. She is still going to get physical and occupational therapy at school. The PT thinks her play skills are almost non-existent (playing with a ball, kicking, throwing, etc.) She wants to work on that, which will in turn help Tessa with social skills. She needs those play skills for kindergarten (which will be in 2008). Next year at this time, we will be doing her kindergarten IEP!! Yikes! Tessa is currently obsessed with ballet because one of her friends at school is taking ballet classes, so her PT and teachers recommended getting her involved in a class. It makes me nervous because the one thing Tessa REALLY struggles with and has made very few gains is standing on one foot. I have to let her try though. I just don't want her to feel like she can't do it. But, honestly, I'm not sure that she has those realizations yet, and I most definitely don't want to be placing them on her myself. She can do so many things and has continually amazed us at all the things she has learned. She is one amazing little girl. She has had her CI for less than half of her life (coming up on the halfway point) and yet she has completely caught up with language (which of course is the most important part of it all). I know she'll get the articulation and the social skills. If she didn't have the language, though, none of those would come.
She is our little shining star. She continues to prove to everyone that she can and will succeed in the things she attempts. Her love of learning is pretty clear. I pray she keeps holding onto that love and uses it to better herself for the rest of her life. She is so much like her daddy in that respect. He is so proud of her and will also engage her in her pursuit of learning. In fact, they are working on learning to read together. Tessa is getting very close to that skill. She sounded out the word "bat" a few days ago. Before we know it, she'll be taking in all kinds of information through reading. At that point, the world will be an unlimited place of knowledge for her. I have no doubt she will take to books and devour them.
Feeling blessed,
Sara
Sunday, February 11, 2007 1:44 PM CST
It's been awhile again. I keep hoping to ask Stephen for info on how to put new pics on here from the Mac, but haven't had the chance. We've been really busy. His job has him working himself to the bone, but hopefully that will slow down a bit soon.
Things are doing okay here. Tessa is moving along at a pretty good clip. Her articulation is improving every day. Strangers are really starting to understand what she says now. She's saying somethings that make us laugh of course. During prayers, she likes to just bump in with her own little prayers. She's getting more and more concepts too, and seems to be picking up on silly little things that happen. Her current favorite activity is "Scrappin" which sometimes comes out like "scrappelin'" It's SO cute when she says it. I give her scissors, a glue stick, stickers, paper and sometimes she gets the added bonus of extra photos that I'm not going to use for my scrapbooking. It's so cute to see the things she creates. So far, they are just "abstract" pieces of art, but they are getting more and more complex and she's able to tell me what some of them are. She likes to make them for other people. Sometimes she takes them around the house and asks me for tape because she wants to put them on the wall.
She's really getting concepts about placement now. She understands the word "lost" better now, though she still thinks if she doesn't "have" something with her, it's lost. She may know where it's at, but if it's not there, she thinks it's lost. Sometimes, if I'm upstairs with her and I need to go downstairs for something, she will come down the stairs crying. I ask her what is wrong and she tells me "Mommy, I sad bepause I wost you." Awww...so sweet. She's starting to get more and more attached to us.
We're working hard on teaching her to express her emotions. She has never been good at this, but we always thought it meant that she really didn't care much about things. Now we're starting to see some behaviors that her teacher thinks are due to her inability to express how she is feeling. For instance, she will hit someone or something randomly. It won't be for any reason, and she doesn't do it often, but she does do it. She doesn't hit me or Stephen at all and very rarely hits Selah, but she has been hitting her horse at hippotherapy, which means that she might get kicked out. Obviously, we don't want the horse rear up with her on it because she startled it. Her hippotherapist thinks that has something to do with her feeling uncomfortable with the movement of the horse (part of the reason she is there), but she's not able to say "I don't like this. It feels weird." Also, because daddy has been out of town a lot, there's been lots of transition. She's never said anything about missing him or being upset about it, but now I'm starting to realize that it does bother her and she's just not telling me. We are trying to talk about it much more and help her to understand how she feels so she can talk to us about them. When I asked her how she felt when daddy was gone, she said "I sad bepause daddy can't play with me." I just have to drag it out of her, she doesn't volunteer the information.
We are working very hard on helping her to express her emotions a bit better. We don't want her growing up feeling like she can't express herself to us, so we want to really help her now realize that we are there for her if and when she wants to talk.
On to the really exciting news. We have a surgery date for Tessa's bilateral surgery, providing that we hit no roadblocks. I don't think I shared this yet, but if I have, I apologize. Tessa is scheduled for surgery on March 30th. She will stay overnight in the hospital, which will be a bit different for her and will probably be hard. We're trying to prepare her for it and give her some idea of what it will be like. I want her to know that her head will hurt, but that it will get better, so we've been talking about that a lot. She is VERY excited to get another CI. She keeps talking about how her friend has 2 CI's and she only has one. Then she'll say "But I'm getting my second CI." I admit, I think I'm more worried this time. I'm not sure if it's because it's more of an optional surgery. The other one was optional too, but without her other one, she wouldn't hear. This one will just make life much easier for her in the long run. Also, there's been lots of talk of meningitis on the CI message board I belong to. Implantees have the highest risk of meningitis of any other group of people in the world, and theoretically, having two doubles that risk, though the risk is still small. We are just making sure we know the signs of meningitis and praying that we never have to deal with that. I'm also concerned about Tessa's reaction. When she was two, she didn't have the language and we just kind of went in, she got her CI and came out. We didn't have to prepare her emotionally for it really. We just needed to be there for her when she came out. At that age, they really only emotionally need mommy and daddy there. Now that she's older and has the language, it's a bit harder to know how she will deal with it. She is much more sensitive to pain than she was at 2. Her sensory system is just wacky, so sometimes things hurt a lot and other times things don't bother her at all. I imagine she will be very upset when she comes out of surgery. She just at that in between age/language level where she understands what we tell her, but doesn't quite grasp the concept of things getting better. She lives in the present mostly, but can understand the future somewhat. She really overreacts to pain and such, so it'll be an interesting experience. I'm happy that she is so excited about her "second CI," though. I think that will help.
I started teaching her what "deaf" meant b/c she was talking about Selah getting a CI when she was older. She picked it up pretty quickly and was able to tell me her friends with CI's were deaf, but that mommy, daddy, and Selah weren't deaf. That was a pretty successful conversation, hopefully building the groundwork for giving her a positive image of herself as a deaf person.
Finally, on a happy note, Tessa found a wonderful friend. It's quite an interesting relationship, but I met her friend's mom on the CI message board. They live about 20 minutes from us. Lexie has two CI's. Tessa and Lexie have almost the exact same story up until they were implanted. Lexie, however, has had many more bumps in the road since her implant (she had to be reimplanted and possibly had a failure long before they knew). Her language is more delayed than Tessa's, but her social skills are so much better. They make wonderful playmates. Tessa loves talking to Lexie. A few days ago, we met Lexie's family at the mall. Tessa was telling Lexie about the carousel and asking me if they could ride on it. It told her that was fine and I'd take them in a few minutes. Tessa started chattering to Lexie about how only 2 people were going on the carousel, not 3 and not one. Lexie held up her fingers just like Tessa and shook her head when Tessa said "not 3" and nodded when Tessa said "only 2." It was SO cute. I love the way they interact. This is such a blessing because Tessa tends to really withdraw in social situations because her peers are usually good communicators. But with Lexie, Tessa is fully engaged. She was running around with Lexie, which NOT like Tessa at all. She is most definitely a dawdler. It was like she was a totally different child. Her smile could light up the entire mall. She was SO happy to have a friend that understands her. They can communicate in their own way. Tessa's language is simple enough yet that Lexie knows everything she talks about and Lexie is a wonderful social role model for Tessa (showing her how to be gentle, etc., which Tessa isn't always great at). I am hoping that we can play with Lexie more and more because I think it would be absolutely wonderful for Tessa. There's really no way to explain the change that I saw in Tessa. She was so lively and energetic, both things she is rarely. At home, she is energetic, but it's more like "sensory" energy. She needs to jump to get her body awareness, etc., but she was enjoying "social energy" with Lexie. She has been asking about her a lot lately too. It was so exciting to see her act like a child her age and having a blast while doing it. I'm so glad to have found such a wonderful role model for Tessa's social skills. It makes me believe that Tessa really wants to be a leader, but because of her langauge delay, she can't be a leader, so she tends to fall back and not participate. When she meets someone who is a bit younger than her and understands her simple language a bit better, she steps right up to the plate and takes charge. :) It was a very hopeful and motivating experience for me as well.
If everyone would pray that Tessa doesn't get sick in March, it would be wonderful. She does have a cold right now and I'm hoping this will be the last of it until after the surgery date. Thanks for reading. It means so much to us to have you all reading and taking part in our lives.
Love,
Sara
Tuesday, January 9, 2007 8:59 PM CST
Well, it's been almost a month, but not quite yet. I hope that everyone had wonderful holidays. We were blessed to be able to spend Christmas with Stephen's family. It was wonderful to see Grandma, Grandpa, Bryan and Sharon again. We did have a bit of a bump in the road in regards to T's implant. Two days before Christmas, she fell into a duck pond in Florida and her implant got wet enough to stop working. Tessa actually handled it remarkably well. She never really even complained about not having it, which really surprised me, because she does complain to me when it's not working. She understood why it wasn't working. She handled it in stride and continued on with her everyday, hanging out with the fam. I, however, had a much different adjustment. My biggest concern was her losing speech (which didn't happen, thankfully). I was also feeling very sentimental that during the first Christmas that she really "got it" she wouldn't be able to hear the festivities. She was unfazed and handled it like a trooper, with just a bit of withdrawal into herself (not surprising, as I'm sure most deaf individuals are the same way around hearing people). Thankfully, we know sign and were able to communicate with her. Because we don't use it on a regular basis, it was hard to get ourselves (well, myself...I should say, not sure if Stephen had a hard time with it or not) into the habit of signing everything again. Tessa even started signing again, even though she was speaking and we could understand her. She hasn't signed herself in awhile, so that was great to get to see that she has retained most, if not all, of the sign that she knew before.
We are back up and running now, even though it is a processor from Johns Hopkins on loan. We should be getting her new one any day now. She was without sound for 6 days, which were somewhat difficult, but certainly doable. Thankfully, her processor and headpiece are still under warranty and we shouldn't have to pay anything to have them replaced. What a blessing! That was a worry for awhile, and those suckers aren't cheap...think 4k, at least.
In other news, we got the test results back from her language testing at Johns Hopkins and a few tests performed here by Jennifer, her private speech therapist. I'll try not to get to complicated, but here's a quick explanation. They score them based on standard score. The exact average of standard scores is 100. Anything between 85 and 115 is in the average range. Johns Hopkins did 2 tests...both had a receptive and expressive component. On the first test (RDLS), her receptive standard score was 107, which put her in the 67th percentile, age equivalent of 4 yrs 9 mo. The expressive component of that test gave her a standard score of 74, putting her in the 5th percentile and an age equivalent of 3 yrs 2 months. Jennifer did tell me that this particular test tends to score a bit low. Not how her standard score was out of the average range, but on the next test is in average range, but her age equivalent and percentile are lower. Strange. The second test(OWLS) gave her a standard score of 104, 61st percentile, age equivalent 4yrs 5 mo in receptive and standard score of 86, 3rd percentile, age equivalent 3yrs 1 mo. She also told me that the age equivalents are very approximate.
Almost exactly a year ago, they did the same two tests. Her scores were as follows:
RDLS:
Receptive standard score 90, 27th percentile, age equivalent 3yrs 0mo.
Expressive standard score 79, 9th percentile, AE 2yrs 7 mo
OWLS:
Receptive SS 86, percentile 18, AE 2 yrs 1 mo
Expressive SS 90, precentile 25, AE 2yr 5 mo
I remember Jennifer telling before the holidays that she got these test results and was surprised that Tessa didn't do better on the expressive portion of the test. The important thing to remember, though, is that to get a point for the expressive portions, she has to say the exact right phrase, word, etc. So, receptively, she made another huge jump, gaining 40 percentile points on the RDLS and 1 yr and 7 mo gain in one years time. Can't complain about that, now can we? On the OWLS, she gained 43 percentile points and 2 yrs and 4 mo in 1 yrs time. I'm sure that these tests test different areas, though I'm not sure exactly what.
Expressively, she seems like she lost a little bit, which is slightly disappointing, but I have to remind myself that the jump that kids make from the ages of 3 to 4 are huge. They are comparing her with other kids that are 4 yrs and 2 months old. Most kids that age are getting to be pretty articulate and are able to express many things. Tessa is held back somewhat by her articulation (and the fact that really she's only been hearing for 2 years, so she's still more than a year ahead of her hearing age). I really believe that b/c T's articulation isn't great, many people think she doesn't understand so in conversations they don't challenge her enough. We do the same thing. Sometimes it blows my mind when she shares with me that she understands something that I would have never really thought she could.
Jennifer also did some testing to be able to "diagnose" T with apraxia (the articulation problems that she's having). This tests the way that she says different sounds and how she moves her mouth. This is where it gets a bit confusing to me. I understand the language portion, but this stuff is hard to read. She talks a lot about phonemes (word sounds) etc. In this test, it compares her with typically developing children as well as other children with speech disorders. Even compared with other children with speech disorders, T is having a rough time with it. She actually did worse on the simple/basic sounds than she did with the more complex sounds. Her percentile in the basic sounds, when compared to other speech delayed children was still the 5th percentile. Yikes! On the complex ones, it was the 13th percentile. Slightly better. Part of it is breaking a habit for Tessa. She got in the habit of saying the basic sounds wrong and now we have to go back and fix them. It was easier for her to say them wrong b/c the "correct" way to say them doesn't come as easy to her.
The good news is that there is a definitive plan to treat this. She just needs lots of practice at saying the sounds correctly. Another part of apraxia is that she may say the sounds correctly when isolated, when she puts them together with the other sounds to make a word, everything gets jumbled up and she tends say it wrong again. I will give her this, though...the girl tries SO hard to say things right. Tonight we were working on the sound f. She tends try to sneak it out without actually using air pressure, but if you catch her, she tries her darndest to get the sound out, with her teeth on her top lip, blowing as hard as she can. Her little head bobs forward and the table gets showered, but she gets it out, usually...when she tries, that is.
It all boils down to this...Tessa is doing wonderful language wise. She understands so much and is doing outstanding in that arena...better than many other CI children. That's where we start...and that's what's most important. If she's not taking it in, she can't give it back out. Jennifer did say that when they have a huge receptive jump like that, the next year usually follows it up with a huge expressive jump. I, myself, seem to think she's already doing that. She's been talking my ear off the past week. Her understanding more and more concepts that she didn't get a few weeks ago, so we're on our way, I think...I hope. The plan of action now focuses on her articulation. I tend to think that if that gets better, her expressive language AND her social skills will improve, because other people will understand her.
So now that I've bored everyone to pieces, that's a little glimpse into the world of therapy evaluations for you. I like getting them because they give a definitive place where she is at...a starting point. We can measure her progress this way. I like that....and I need that. Being with her everyday, sometimes it's hard to see her progress, but when you see it on paper...that she's gained over 2 years (by the OWLS test) receptively in the last year, it makes my heart skip. I'm disappointed that she's having a rough time with articulation, but that can be worked through. If she wasn't getting the language, that would be a whole 'nother ball game and much more difficult one to win, so I'll take articulation delays over language delays any day.
Oops...one more thing...bilateral surgery is put off until at least March....b/c of the sick season....much to my chagrin, but I can't really put the health of T at risk, so I'm willing to agree to that timeframe.
If you'd like to, here are some specific things to pray for for T and our family....
-That we are able to show her how to react appropriately to things that disappoint her (it seems we have a bit of a drama queen these days, but I've also heard that's the age).
-That she will gain more compassion for others and start to get those social concepts.
-That her bilateral surgery goes off without a hitch and the T will handle it well
-That her articulation will improve everyday and that both Stephen and I would be very deliberate about working with her on that.
Love,
Sara
Sunday, December 10, 2006 2:36 PM CST
Weeeee're back!! It's lovely to be in our own house...and our beds are so comfy...not that the bed we slept in in VA wasn't. Tessa has a hard time at other houses. She shared a room with her friend Mackenzie and poor Mackenzie just wanted to sleep and Tessa proceeded to speak very loudly to her for 3 or 4 hours each night. Those are the type of things that are hard to figure out how to handle with Tessa. She got in trouble too many times to count for not going to sleep and keeping Mackenzie awake. So, what a welcome relief it is to be home and for her to have her own room where she can go to sleep.
The trip was relatively uneventful. Our appointment on Tuesday went well and Tessa was a little ham. We got to Johns Hopkins at about 8:30am...and her first appointment was at 9am. I thought it was at 9:30, so I'm thankful we arrived early. Initially, they told me we didn't have an appointment until 11am. Oh man!!! Thankfully they realized she had a grant appointment at 9:00. Jennifer, her old speech therapist at Johns Hopkins, performed 2 speech/language evaluations on her. We don't have the official scores yet, but Jennifer was quite amazed at Tessa's progress. She said she was guessing (before scoring the test) that Tessa gained about 16 months of language in the last 12 months receptively (what she is understanding). That's a pretty big jump. They really only expect them to gain 12 months in 12 months time. Jennifer told me that "typical" children actually don't generally gain even 12 months of language development each year. Expressively, she's guessing that she stayed somewhere around 12 months gain. I'm suspecting that a lot of that has to do with her articulation delays. Because other kids and some adults don't understand her speech, they tend to keep it pretty simple, even when she understands much more than people give her credit for. Jennifer also said that when they see a big jump receptively, they tend to see a big jump expressively the next year, so hopefully that'll mean that Tessa really starts talking, even more than she already is. I'm anxious to see what the actual results are. They also did hearing testing, where she got 100% of the phrases correct (she had to point at a picture while a conflicting phrase was playing). They went all the way up to 62 decibels on the correct phrase and 72 dB on the incorrect phrase. That's better than some "hearing" kids do. After lunch, they videotaped us playing together with various toys. At one point, she had to play by herself with no contact or "looks" from me. She proceeded to just run in circles around the room for some reason. Not sure what that was about, but it was interesting. The audiologist who was videotaping said "Don't blame me if you get dizzy watching that later." Tessa does not get dizzy at all, so if you ever see her and do any type of spinning game, just know you'll be outlasted....she wins EVERY time while Stephen and I collapse on the ground with our heads spinning. In the meantime, she is requesting more.
I was thinking the other day how frustrating it must be to understand so much, yet only be able to give out what she can. That makes it hard for others to engage her in "challenging" conversations for her. It helps me understand some of the reasons she may act out or just be frustrated. The other day, I asked her to leave the cat alone. She's gradually getting better at listening, though we're still working on listening the first time. She came up to me and said something over and over and over. I couldn't figure out what she was saying. Finally, after about 5 minutes of trying to figure it out, I realized she was telling me "I leaving the cat alone." The phrase has a lot of difficult sounds in it, so it just wasn't coming out right. I can't even imagine how frustrated she must have been, but she was so persistent. She really does amaze me some days.
And the best news of all...at least from my perspective, Tessa has started praying on her own....and it's meaningful...it's not just rote praying. Usually before bed, we read a book, pray and sing two songs. When we pray, I always model it for her and she repeats what I say (after we talk about the way we felt during the day and what we should pray for). Stephen told me the other night that he put her to bed and she prayed by herself about the things they talked about before praying. Then, last night at dinner, we started to pray. I started out and Tessa just butted in and wanted to pray her way, I suppose. I didn't stop her because I wanted to see what she'd do. Here is what she said "Thank you God for being very careful. Thank you God for my CI. Thank you God for the people making my Ci." Interesting, I thought, she's understanding to be thankful for her CI....and even the people who made it. Wow! Then, in the middle of dinner, she wanted to pray again and this time she thanked God for the very very very pretty sky, not spilling my drink, standing on the floor, Jesus, and christmastime. Guess it just goes to show you what kids are thankful for, huh? She's glad that she didn't spill her drink...yet. She is quite the clumsy girl. She also completed some of her phrases with motions (on the sky one she swung her arms out above her head).
I'm just so excited that she seems to be getting the concept of thanking God for the things that he provides for us...and I have to chuckle at the things that she prays for. I know they are meaningful to her and it just shows that she is working on certain things and focusing on them as well. I'm so proud of her.
Love,
Sara
Wednesday, November 29, 2006 4:07 PM CST
Another update in the same month! Are you shocked? I figured I better update now as we're getting ready to be forcefully thrown into the month of December. Saturday, we are driving up to Virginia for an appt at Johns Hopkins. I will have many "stats" to report on Tessa's progress when we get back. I love these visits because they give me (and others) a "tangible" way to see Tessa's progress. Lately, though, it has been so evident to me.
I suppose it's like the snowball effect. Now that she has so much vocabulary, her brain is starting to really start to put it all together. Just about every day, she says something that makes my mouth drop. Today we were driving in Atlanta going to her hearing test. She asked me nicely for her drink (fast food drink with a straw, which I'm not too keen on her having in the car, so I try to monitor it closely when she does have it). I said "Hold on. I'll give you your drink after I make this turn." After the turn, I gave her her drink. Shortly after that, I made another turn and she said to me "Mommy, you made another turn." I have never talked to her about "turning" the car or any concepts like that, so it surprised me that she so quickly picked it up. Her expressive language is improving by leaps and bounds. I imagine that a year ago, she did understand some of these concepts, she just couldn't give them back to us. You all know how smart she is already, so I guess I shouldn't be surprised that she's giving these back to us.
This weekend, when I got Tessa up and got her CI on her, she said "Mommy, we need to go to the store." I asked her why and she said "Because we need to buy Selah a CI." Hmmmm...guess we've got some 'splainin' to do. Our pastor has a child who was born with a liver disease, so I thought I might ask his wife how they handled that. She reminded me of the man who was born deaf. The Pharisees asked Jesus why he was born deaf...was it because of his mother's sin or his father's sin?? Jesus replied that he was born deaf to glorify God. Wow...what a promise for Tessa. I've often struggled with how to explain to Tessa that she's not "perfect" by societies standards, but that she is just the way God wanted her to be. It's hard to explain that God created you perfectly in your mother's womb....but at the same time I don't think God caused her to be deaf. But...He does have a plan for her and that's the most amazing thing. I know that she will do some great things and change lives. It was a good reminder for me because I know so much of how Tessa views herself will come from me. Will she think something is wrong with her because I act like there is, or will she believe that God made her deaf so that He could be glorified in her? I believe the latter is true, but I do struggle within myself, having to focus myself on that fact. It is so easy to get bogged down in all the therapy and just wish she were "normal." I can feel sorry for myself and her at times, but I'm realizing more and more lately that if she sees that in me, she will take on those feelings as well. So, I think for now, I will put much concerted effort into teaching her that yes, she is different, by societies standards, but that God has a plan and purpose for her and in that, He will be glorified. She will be used by God....because in all reality, her self worth won't come from me, Stephen, Selah, other relatives, and friends, but from God Himself, who knows her better than anyone else...even me. Stephen told me the other day that I understand Tessa's speech better than he does (not a surprise, as I'm around her much more). It made me feel good....but I just realized as I was writing that God knows EVERYTHING she says. Sometimes I just need to be reminded....
So on to other interesting topics....the bilateral process is on hold for a bit right now. Some obstacles have been thrown into the mix. Our biggest one is insurance. Stephen's company informed us 2 weeks ago that they are changing carriers. This was quite a blow to me, even though I knew it was coming at some point. Our current insurance has been amazing. They have paid for EVERYTHING! We do have a few copays, but nothing for her therapy. The bilateral implant is something that many insurances are fighting, so we may be dealing with a denial and then having to appeal with this new company. Our current company has a policy in place now in some of it's state divisions (after dealing with a class action lawsuit) that covers bilaterals. Ours did not have that policy in place, however it would have been much easier to argue with the current insurance about it. Plus, we may be dealing with higher premiums on our new insurance because of this planned surgery, however, it's not something we could lie about on the application, of course. But, as Stephen said, if God gives us this good pay and salary, maybe it's because He wants us to take care of Tessa with it. It has been a bit stressful for me, since I'm the one who generally deals with Tessa's medical care, so I know all the ins and outs and possibilities, so it is a little easier for him to say "We just need to trust God" (which is true of course) than it is for me, since I know too much for my own good. We will see what happens. For all I know, this new company could approve her bilateral from the get go, so I've figured out that right now it's not worth my stress, however,it is worth my prayer and anyone else who feels led to pray about it. I'm also a bit concerned about them paying for all of Tessa's therapy appts each week. It'll all work out, I know, and she will get what she needs.
Her hearing test came back today at pretty much what I expected. With her CI she is hearing "near" normal, which is typical. I believe most of her thresholds with the CI (at varying frequencies) were around 30 dB. Normal hearing is considered 20dB and lower. I do think she hears better than that, but it's hard to test. They tested her hearing in the other ear, just to make sure it was a candidate for a CI. It's pretty conclusive that it is, but they had to do it as a formality. She had only one response in a very high frequency at 115dB. The rest they tested up to 120dB (as high as the machine goes) and got nothing. This is about equivilent to the sound of a jack hammer. There's really no reason for them to want to keep from implanting her other ear at this point, even though when her hearing loss was first diagnosed, this was her "better" ear. At that time her hearing loss was about 65 dB in that ear. I told Stephen the other night, at that time in our lives, I wished in my heart that Tessa would lose more hearing because I feared that she would not be a CI candidate because she could "hear too well" out of that ear. If that were the case and she was denied a CI in either ear, she would have struggled for the rest of her life with hearing aids that likely didn't help her that much. I felt like she was going to be stuck in the middle. I never told him that at the time, because I felt like a horrible mom for wishing more hearing loss on my child.
So, this week, it's off to Johns Hopkins for testing and her study appt. I'm excited, yet not looking forward to the trip as neither one of the girls has a good time in the car. Thank goodness for that wonderful gift from UJ and Aunt Emma a few years ago. The portable DVD player is a lifesaver on these trips! This will be a practice run for our trip to FL at Christmastime. We are really looking forward to visiting with the fam. Hopefully the road trip will be relatively easy as well. So, it's a busy December, full of appointments and road trips. It looks to be a very exciting holiday season...full of wonderful songs from Tessa that include "Jingle Bells, Jingle Bells, Jingle Bells, Jingle Bells...." You get the picture. She doesn't always understand there is more to it than the first 2 lines. It will definitely be a blessed holiday, full of thanks for all the wonderful gifts we have in our lives, including each other, our girls and the gift of hearing and songs from Tessa. Couldn't ask for anything better than that! In comparison to that, everything else pales.
Feeling blessed,
Sara
Wednesday, November 15, 2006 8:56 PM CST
In an effort to update slightly more often, here I am. I'm hoping to keep up with this a little more, but I think I say that in every journal entry, so I'm sure you don't believe me.
Tessa has been continually blowing us away with her progress. Sometimes, though, it's hard to see because we are with her every day. I've told people before that it's just hard to see and they say "But, when I read her webpage, I can see." So, to convince myself of her progress, I've taken a peek at her prior journals on the site. Here's a snippet from a post last November:
"I think Tessa and the teachers daughter, Gabby, get along really well. Mrs. Short (her teacher) told me that Gabby was going to have a really hard time when we leave. They are less than a month apart in age. They are so cute together. Then Tessa comes home and says "Gabby friend" or "Gabby Pushing" (I'm not sure if she's saying she was pushing Gabby or Gabby was pushing her)."
If this were to happen today, she'd probably come home and tell me "Mommy, I have an owwie on my bottom because Gabby pushed me." Granted, it might not sound perfect, but hey....just the fact that she's gone from 2 word sentences to such complex sentences and thoughts is amazing to me. Sometimes she doesn't use that complex sentence structure. She might say "Mommy, Gabby pushed me." and then we'd have more conversation and she'd tell me she had an owwie.
Here's another incident that happened this past May after she started in Mrs. B's class.
"Granted, she doesn't talk about the complex things that most 3 year olds talk about. Here is an example of our current exchanges:
Tessa: "Mommy, I have owwie on my finger."
Me: Oh no...how did you get an owwie?
Tessa: "Holding my hand."
Me: Who was holding your hand?
Tessa: Conan (from school)
I can now ask her who is in her class and she will tell me everyone. There is:
Reagan "Wae gah"
Conan "Cogan"
Caleb "Ca duh"
James "james"
Mrs. Barnes "Bombs"
Mrs. Sonke "shon kee"
Mrs. White "why"
She starting to put endings on her words now which is something we've been working on quite a bit lately. Cat is now "ca-T" and not "ca" It's so exciting to see other people be able to communicate with her. Granted, she's not completely there yet, and we've still got lots of work to do, but it's amazing to see how much progress she has made."
Now if this happened she would be able to tell me in one sentence that Conan hurt her hand when she was holding his hand. She also pronounces the names much better and adds a Miss on the beginning of all the teachers. Her current class only has 2 other students in it, but they interact often with the other class (they eat lunch together and take naps together and do most of the fun activities together). I think I may have mentioned that if Tessa's social skills can improve enough, she'll move up to the upper class at the beginning of next year...at least for part of the class. She needs to be around kids with more speech and ability, as her current classmates are a ways behind her, especially in regards to vocabulary. They are also younger, so it's understandable. That will be exciting, though I'm sure she'll miss Mrs. B and Mrs. W.
She learned all about Halloween and probably learned some things that we weren't too excited about her learning. She now knows what a skeleton is. Her vocabulary is just improving by leaps and bounds. She's picking up things from our conversations pretty easily now. Now at school, they are learning about Thanksgiving, so we are talking up all the foods at home. She is also learning obscure verbs like "sip," "remove," and "rotate."
Her articulation is still lagging, but I think I've noticed a big improvement these past few weeks. I can't tell if it's because she's just adding so much vocabulary and the longer words are just easier to figure out b/c there are more syllables to use in deciphering them or if her articulation is truly getting better.(like my runon??) We did finally learn the true reason why she so darn picky. I never knew this, but she's never been really truly chewing her food, hence the reason she can't stand real meat and pasta. Ever swallowed a huge chunk of meat or a whole piece of pasta? It's not very comfortable. So, we're starting to work on teaching her isolate her jaw movements and teaching her to REALLY chew instead of just chewing a little bit. That is a very frustrating thing and leads to some evening battles. But, she's such a skinny girl and rarely seems to be hungry that she'll just sit out dinner and not touch it if she doesn't think she likes it. She's so tiny that it worries me, but so far I guess she's fine.
Stephen and I have been really examining our parenting. I feel like we were thrown into parenting so quickly that we never really had a chance to set up our goals. So, we're going to sit down and talk about what we want to encourage in our girls. We really feel like spiritually we are at a loss as to how to work with Tessa. It's so hard to know what she does and doesn't understand. When I think of a 4 year old understanding the concept of God, it makes me think "I don't even really understand God that well." It's just not a tangible thing for them. I have to remind myself that they really do understand more than we think they do. Children have an innate ability to understand things like God. I think as we grow into adults, we lose some of our childlike faith. So, we've been kicking it up a notch, trying to talk to Tessa more and more about God and how much He loves her. We're also using that to help her learn more social skills, just pointing out examples of when someone is nice or compassionate with another person and telling her that God loves it when we treat others kindly. She struggles with that. She's not an aggressive child, but she can be a little rough sometimes. I do believe that we are making progress in that area now. She's starting to be much more polite when she asks for things. Instead of yelling "Mommy! I want milk!" she will come to me and say "Mommy, may I please have milk?" in a much nicer voice. This is was such a hard thing to combat because in the beginning we celebrated so much when she just said milk....then on to "want milk" etc. We have noticed a bit of regression when she sees Selah getting something by just saying "milk." She wants to do it too, but we are reminding her that Selah is a baby and will learn to be nice just like her. I'm trying to teach her about being an example and showing Selah how to be nice.
One of the things that I am so pleased about these days is how much Selah adores Tessa. I think this is wonderful for Tessa and her self esteem. Selah is always asking about Tessa in the mornings and when she sees her come home she yells "Tessa!!!!!" with a huge grin on her face. I love it! It sure makes a mommy proud to see her little girls becoming good friends (sometimes, of course). I was also excited to see Tessa playing with another little girl at the mall play area last weekend. It was so cute. This little girl took to Tessa and was upset when I had to put Tessa in timeout for being rough. She followed Tessa around and did everything that Tessa did. Tessa's smile could light a room, she was so excited to have a little friend. One on one, Tessa does okay with other kids, but once the crowd gets too big, she has a difficult time and tends to withdraw. Some of it is probably because of the noise and some of it is just that they don't really interact with her as much. It's very hard for me to watch as I don't want her growing up like that, but I have to tell myself that she will work through this. That's why it thrilled me to have this little girl so attached to Tessa at the crowded play area. It almost made me cry....silly, I know.
That's about it for tonight, I believe. These days have been fun watching Tessa increase her vocab and just livin' it up. She is having a blast learning so many new things.
Love,
Sara
Wednesday, October 25, 2006 9:31 PM CDT
Just went back and corrected some terrible typing errors. Obviously I didn't proofread before I posted this before. This post is from Monday.
Okay, so I know it's been forever, but this time I actually have an excuse. I've been trying to update for awhile now and couldn't remember my password. So, I have been playing email tag (one of the beauties of email, I must say) with Caringbridge and finally got the issue solved. Phew! I thought I was going to have to start a completely new site! I have also been making an attempt to spend more time away from the computer. I tend to gravitate towards the computer unless I have a list of things that need to get done...so I'm trying to make better habits, keep a slightly better house (though I know it'll never be perfect) and spend some quality time with the kiddos.
On to the star of the show:
Can I just say that Tessa is doing amazing?!?! Can I say it again?? Tessa is doing amazing!! She is such a little communicator and talks all the time. We're still dealing with the articulation issues. Her Speech therapist (Jennifer) is starting to consider the possibility of it being something called apraxia. That's basically poor muscle planning in her mouth. She's not very consistent with her sounds. Somedays she spot on and other days she's way off the mark. I believe that lots of this has to do with how tired she is. So, we are going back to square one in speech. Tessa is "relearning" the easy sounds so she can get them right all the time. Practice, practice, practice. This will make her more intelligible to other people.
Her language, though, has exploded! I couldn't even try to count the number of words she says now. Her sentences are getting more and more complex. We are having some problems with her yelling a lot, though they are finally starting to resolve. Anyhow, her teacher told me the other day that she was yelling at school. She told Tessa that she didn't like it and Tessa said "Mommy doesn't like it either." Spoken in true honesty. She elaborates on stories quite a bit now and is a champ at retelling them to us. She is also getting higher concepts like "why?" I believe she's probably understood these type of things for awhile now, but hasn't been able to give them back to us. We've been working on "why?" for a long time. Now if you ask her why, she'll say "because...." The answer isn't always right, but it's generally pretty close to the right answer. Soon, hopefully, she'll start asking why herself.
We had her parent teacher conference last Tuesday. Her teacher (Mrs. B), the older kids teacher (Mrs. V) and the speech therapist were there. They pretty much told me that Tessa is doing really well. Her language is blossoming. Her teacher was shocked at how quickly she started using such complex sentences. She said it came out of nowhere. I tend to believe, though, that at home Tessa speaks much more than at school. I think she does talk a lot at school, but she's been speaking those kind of sentences for awhile at home now. Her vocabulary is much higher than the other two girls in her class (they are a bit younger...by about 6 months). It just proves to me that Tessa is one smart little girl. She soaks up everything she sees and hears and though she may not spit it back out right away, she processes it and comes back with it at some random time. Her teacher wants to move her up to the next class, at least for some time during the day, after Christmas, but Tessa has to improve her social skills. That is her one area where she lacks appropriate progress. Well, I suppose she may be progressing just fine, she is just still behind by quite a bit. She doesn't want to use her words when she's upset. She just yells. We are working on that. Her behavior is just not the same as what her peers exhibit. We are working on this and it's getting better, but she is still a ways behind. It's frustrating as a parent, because I know so much of this has to do with sensory wires getting crossed, but not all of it. It's hard to know the line where it goes from something she has a really hard time controlling to the point where she is manipulating us. I feel terrible punishing her for something that really does make her feel strange or for trying to get sensory input that she's not receiving elsewhere, but she also has to learn appropriate behaviors and some of these things aren't appropriate at all (not to mention the fact that they really get on our nerves too). We are also working on learning to listen AND obey. I admit, that she has learned how to play me. She doesn't listen very well right now, so we are trying to get back on track. I'm working very hard to give her consequences after the first round of not listening, but it is hard for me. It goes back to me never knowing what she was hearing before. Logically, now I know that she hears me...but before she didn't. There have been times where she has been punished when she didn't have her CI on and couldn't hear me. Granted, these are few and far between, but they still make a mommy feel terrible.
The last thing I wanted to talk about is the possibility of Tessa getting another CI (going bilateral). We have been considering this for a while now and have kind of put it off because it tends to be a battle with the insurance. I don't get why they have been battling against paying for two CI's (except for the fact that they want to keep their money). To me, it's the same as when a person loses both legs. Seriously, would the insurance just pay for one prosthetic?? Doubtful. A person CAN function with one leg, but they would likely need crutches. People with bilateral CI's tend to function MUCH better in noisy environments and can localize sound much better. So, a person can function with one CI (much better than with no CI of course), but they cannot function to the capacity that a bilaterally implanted person could. So, our hope is that Tessa will be able to get another CI here in the near future. The problem that we are running into is the decision about whether to go back to Johns Hopkins or to stay here in Atlanta. I've heard good things about Dr. Todd here in A-town, but fully trust Dr. Niparko at JHH. I do feel like Dr. Todd is a competent surgeon, though. He's very conservative. My main worry is the audiologist here. I've heard mixed reviews about her and she is the only one in this area. Some people think she's great, others have more a difficult time with her. We want Tessa to have the best of the best, but it would come at a huge inconvenience AND it would take a lot longer to get her the second CI. Time is precious in this type of situation. So, right now I think we're leaning more towards staying down here, but that is not set in stone yet. She has an appt on Thursday. If we do go with Dr. Todd down here, she could very possibly have her bilateral done by the end of the year! That seems so soon and is very exciting, yet frightening at the same time. The insurance issue is pretty well resolved now, as Blue Cross and Blue Shield is now dealing with a class action lawsuit from various clients who were refused bilateral CI's. We'll see what happens, but if you all would please pray that we make the right decision, we would be very grateful!!
I may not get new pictures up tonight, as I'm attempting to get into bed by 10pm, but I will work on getting them up tomorrow....so as Tessa would say "hold your horses!"
Sara
Monday, October 23, 2006 7:17 PM CDT
Okay, so I know it's been forever, but this time I actually have an excuse. I've been trying to update for awhile now and couldn't remember my password. So, I have been playing email tag (one of the beauties of email, I must say) with Caringbridge and finally got the issue solved. Phew! I thought I was going to have to start a completely new site! I have also been making an attempt to spend more time away from the computer. I tend to gravitate towards the computer unless I have a list of things that need to get done...so I'm trying to make better habits, keep a slightly better house (though I know it'll never be perfect) and spend some quality time with the kiddos.
On to the star of the show:
Can I just say that Tessa is doing amazing?!?! Can I say it again?? Tessa is doing amazing!! She is such a little communicator and talks all the time. We're still dealing with the articulation issues. Her Speech therapist (Jennifer) is starting to consider the possibility of it being something called apraxia. That's basically poor muscle planning in her mouth. She's not very consisten with her sounds. Somedays she spot on and other days she's way off the mark. I believe that lots of this has to do with how tired she is. So, we are going back to square one in speech. Tessa is "relearning" the easy sounds so she can get them right all the time. Practice practice practice. This will make her more intelligible to other people.
Her language, though, has exploded! I couldn't even try to count the number of words she says now. Her sentences are getting more and more complex. We are having some problems with her yelling a lot, though they are finally starting to resolve. Anyhow, her teacher told me the other day that she was yelling at school. She told Tessa that she didn't like it and Tessa said "Mommy doesn't like it either." Spoken in true honesty. She elaborates on stories quite a bit now and is a champ at retelling them to us. She is also getting higher concepts like "why?" I believe she's probably understood these type of things for awhile now, but hasn't been able to give them back to us. We've been working on "why?" for a long time. Now if you ask her why, she'll say "because...." The answer isn't always right, but it's generally pretty close to the right answer. Soon, hopefully, she'll start asking why herself.
We had her parent teacher conference last Tuesday. Her teacher, the older kids teacher and the speech therapist were there. They pretty much told me that Tessa is doing really well. Her language is blossoming. Her teacher was shocked at how quickly she started using such complex sentences. She said it came out of nowhere. I tend to believe, though, that at home Tessa speaks much more than at school. I think she does talk a lot at school, but she's been speaking those kind of sentences for awhile at home now. Her vocabulary is much higher than the other two girls in her class (they are a bit younger...by about 6 months). It just proves to me that Tessa is one smart little girl. She soaks up everything she sees and hears and though she may not spit it back out right away, she processes it and comes back with it at some random time. Her teacher wants to move her up to the next class, at least for some time during the day, after Christmas, but Tessa has to improve her social skills. That is her one area where she lacks appropriate progress. Well, I suppose she may be progressing just fine, she is just still behind by quite a bit. She doesn't want to use her words when she's upset. She just yells. We are working on that. Her behavior is just not the same as what her peers exhibit. We are working on this and it's getting better, but she is still a ways behind. It's frustrating as a parent, because I know so much of this has to do with sensory wires getting crossed, but not all of it. It's hard to know the line where it goes from something she has a really hard time controlling to the point where she is manipulating us. I feel terrible punishing her for something that really does make her feel strange or for trying to get sensory input that she's not receiving elsewhere, but she also has to learn appropriate behaviors and some of these things aren't appropriate at all (not to mention the fact that they really get on our nerves too). We are also working on learning to listen AND obey. I admit, that she has learned how to play me. She doesn't listen very well right now, so we are trying to get back on track. I'm working very hard to give her consequences after the first round of not listening, but it is hard for me. It goes back to me never knowing what she was hearing before. Logically, now I know that she hears me...but before she didn't. There have been times where she has been punished when she didn't have her CI on and couldn't hear me. Granted, these are few and far between, but they still make a mommy feel terrible.
The last thing I wanted to talk about is the possibility of Tessa getting another CI (going bilateral). We have been considering this for a while now and have kind of put it off because it tends to be a battle with the insurance. I don't get why they have been battling against paying for two CI's (except for the fact that they want to keep their money). To me, it's the same as when a person loses both legs. Seriously, would the insurance just pay for one prosthetic?? Doubtful. A person CAN function with one let, but they would likely need crutces. People with bilateral CI's tend to function MUCH better in noisy environments and can localize sound much better. So, a person can function with one CI (much better than with no CI of course), but they cannot function to the capacity that a bilaterally implanted person could. So, our hope is that Tessa will be able to get another CI here in the near future. The problem that we are running into is the decision about whether to go back to Johns Hopkins or to stay here in Atlanta. I've heard good things about Dr. Todd here in A-town, but fully trust Dr. Niparko at JHH. I do feel like Dr. Todd is a competent surgion, though. He's very conservative. My main worry is the audiologist here. I've heard mixed reviews about her and she is the only one in this area. Some people think she's great, others have more a difficult time with her. I want Tessa to have the best of the best, but it would come at a huge inconvenience AND it would take a lot longer to get her the second CI. Time is precious in this type of situation. So, right now I think we're leaning more towards staying down here, but that is not set in stone yet. She has an appt on Thursday. If we do go with Dr. Todd down here, she could very possibly have her bilateral done by the end of the year! That seems so soon and is very exciting, yet frightening at the same time. The insurance issue is pretty well resolved now, as Blue Cross and Blue Shield is now dealing with a class action lawsuit from various clients who were refused bilateral CI's. We'll se what happens, but if you all would please pray that we make the right decision, we would be very grateful!!
I may not get new pictures up tonight, as I'm attempting to get into bed by 10pm, but I will work on getting them up tomorrow....so as Tessa would say "hold your horses!"
Sara
Wednesday, August 16, 2006 8:40 PM CDT
Can you believe school is already started?? Tessa started on Monday and she is LOVING it!! She got the same teacher as last year, which I was hoping for. Her teacher is absolutely amazing. Tessa adores school!! There are only 3 kids in her class this year and they are all girls...a far cry from last year where they were mostly boys. They added another teacher this year because they had more kids coming. The new teacher took the older/more advanced kids, and the hope is that Tessa will move up to her class sometime this year. It'll be bittersweet for me, b/c I love her teacher so much, but it really is a good thing.
She is telling us all kinds of things these days. Tonight, she was running around singing a song for her class. "All around the castle, the knight chased the dragon..." (sung to Pop Goes the Weasel). She knows the first line very well, but gets stuck on the second. She gets the last one, though "ROAR! went the dragon!" They are doing a unit on Fairy Tales right now, so she is learning all about princesses and castles and knights. She seems to be enjoying it and if you ask her if she is a prince or a princess, she'll tell you "princess" (though it sounds more like pretzels).
Tessa is also starting to "read" books to Selah. They are so cute together. They love to play. Tessa has one particular book that she knows how to "read" (has memorized) and she reads it to Selah. I LOVE it! It's so exciting to see them interacting so much. Now Tessa says "Selah say Tessa" or whatever other word she wants Selah to repeat. Selah is starting to decipher what Tessa is saying too, which is cool. I can't wait until they can communicate together. I have a feeling they will communicate better with one another than they will with Stephen and I.
That's about it for now...I need to get to bed, because 6:30 comes early now that I have to get up to get Tessa off to school. She is really soaking it all in though and thoroughly enjoying it! I can't believe she's going to be 4 next month!!
Tuesday, July 11, 2006 7:56 PM CDT
Hmmm...a lot has happened since I last posted. Tessa is now in Physical Therapy once a week, in addition to her speech therapy once a week. Also, we've had various dr.'s appts, so we've been quite the busy bees. Selah is pretty much just along for the ride, though she is making me being in Speech slightly difficult now because she just wants to go go go! The girls never stops now that she can walk. Back to Tessa...
Her speech is coming along very well. We hadn't seen her speech therapist for a few weeks due to the July 4th holiday. We saw her today and she was very excited about Tessa's progress. Tessa is talking all the time now at home, but doesn't always have much to say at speech (which is normal, I think). Today, though, she talked quite a bit. I wasn't in there for the whole session (see above comments about Selah), but I did catch the first 30 min. and she was more talkative. I'm glad that she's starting to talk to other people. She really does have a lot to say, though many times I'm still the "translator." More and more in public, though, people are understanding what she's saying and she is answering their questions.
We are still dealing with the potty training problems, but her OT (we have had a few OT sessions as well) thinks it's due to the fact that Tessa has poor body awareness. This all goes back to her vestibular problems. Tessa can't tell the difference between needing to go just a little and REALLY needing to go, so she just doesn't tell us. She can and will go when we put her on the potty, though sometimes she initially balks at the idea (b/c she doesn't want to quit doing whatever it is she's doing). She has told us about 3 times total. Yesterday, her OT (occupational therapist) gave me a few exercises to help her be aware of her bladder a little more. Also, she gave me exercises to help Tessa increase her oral motor skills. Oral motor skills are those that involve moving the mouth. Tessa needs to improve her mouth strength and coordination to help her articulation and we're also hoping that it will help her be a little less picky about foods. The last "homework" the OT gave us yesterday was a "brushing" routine. This is done 3 times a day. Basically, we have a brush that is similar to a baby hairbrush. We use hard pressure and "brush" her arms,legs and back. After that, we do "joint compressions." They are pretty self explanatory, I suppose. You just put your hands on either sides of each joint and gently push them together. This should help her with body awareness and with her sensory issues. It should give her some of the sensory input she is craving. She enjoys deep pressure and the brushing gives her that.
Since I last updated, we have also been to PT numerous times. She has improved IMMENSELY in this area. She is starting to go up the stairs alternating feet (while holding onto a railing). We call these "big girl steps." She won't do it on the way down yet, but she will get there. She is also getting better about jumping. She will now jump off of a relatively low object (probably about 6 inches) and land without much difficulty. YAH! I'm so excited for her to be able to do these things. Her balance is improving as well. She can stand on one foot for a few seconds, which doesn't sound long, but given where she was at before, it is great.
She also had her biannual study appointment at Johns Hopkins. She did fabulous (as always!). Her listening skills are just about on the same level as a normal child (and she chooses to use them about the same amount of time as a normal child...which is very rarely). When they tested her hearing "in noise," she did outstanding. When they do this, they give her a paper with pictures on it. They play a phrase describing one of the pictures out of one speaker and a conflicting phrase out of the other speaker. If she is doing well, they will bump up the decibel level on the conflicting phrase. Last time we were there, she petered out on correct answers when the conflicting phrase was 10 dB less than the correct phrase. This time, it was 10 dB higher and she was still getting 60% right. The audiologists told me that normal children get between 50 & 60% correct in that environment. Go Tessa! I am SO proud of her. They gave her a new map where they increased some of the higher frequency sounds and her therapists here think that she is doing much better (possibly b/c of the map, but also b/c of normal progression).
We have also seen the vestibular specialist, who basically told me that given her difficulties Tessa is doing wonderfully! We are due to go back there next week, I believe. Many kids with Tessa's vestibular problems are terrified of movement (being moved or moving themselves). She isn't, which is a big positive because then she can endure the therapy without much fuss. She actually enjoys it quite a bit. She did mention a few things about her eyes. Your eyes are directly connected to your vestibular system. Sometimes Tessa's eyes show a nystagmus response (a little bit of a shake when she turns her eyes) when it shouldn't and they don't show them when they should. This just pretty much confirms the vestibular difficulties. One of the things that we, as parents, have to be aware of is that Tessa may have some difficulty with spatial relationships (where things are on a picture, etc.) and with certain "connecting" ideas because somehow the vestibular system is directly connected to these things. It never ceases to amaze me that these two tiny malformations can affect and change someone so much.
Finally, we went to see the pediatric cochlear implant dr. in Atlanta. His name is Dr. Todd. He's a very conservative surgeon, so when I asked him about going bilateral (getting her another cochlear implant on the other side), he was a little hesitant. There was a study done in Canada that showed the risks of meningitis in cochlear implant recipients is a bit higher than they originally thought. This is just one study, though, so we may continue to pursue this. We haven't really discussed it much since that initial appointment. He took the tubes out of Tessa's ears, which was a fiasco. Tessa was fit to be tied (well, I suppose she was "tied" down by two nurses. It was quite the hectic appointment.
So far, personally, we have a had great summer. Sometimes I have a rough time with the potty training issues, but I have to realize that it's all Tessa. I can't make her do it and she is having a hard time with it. These things don't come as easy for her as they do for most other kids. Other than that, we've been doing lots of fun stuff. We've taken quite a few trips to the park. We also enjoyed the fireworks on the 4th. Tessa got to play at the little carnival area they had set up and had her first cotton candy. You can bet she gobbled that down! Selah enjoyed it as well. She was sitting on my lap saying "wow!" Tessa now tells me about the fireworks a lot. She will just randomly say "Fireworks go boom!" She really loved them!
We are getting ready to join the YMCA and have been enjoying a week guest pass. They have a class there called "Kid Fit" for kids Tessa's age, so I'm considering taking her to that. I think she would enjoy it, but I'm a little nervous about them doing things she can't do (like standing on one foot). She is also starting to get to know the kids at church. The other day she said "I go see my friends at church." Of course, it was Monday, so I had to disappoint her and tell her we wouldn't be doing that until Sunday.
Tessa also got to see Grandma Haywood and Uncle Chewy two times! She saw Aunt Shae Shae and Grandpa Haywood once each. She really enjoyed having her family come and visit. She had a blast!
I suppose that is it for now. I hope everyone is having a great summer! Enjoy the sun (but not too much)!
Love,
Sara
Thursday, May 18, 2006 2:14 PM CDT
I cannot even begin to tell you how much Tessa has improved since starting school. It sounds crazy, but the girl is a chatterbox. She LOVES to talk. Granted, you can't always understand exactly everything she says, but everything she says is an attempt to say a sentence or words. Her sentences are really coming a long. Her conversational skills are taking off and she is able to hold conversations pretty well now. Granted, she doesn't talk about the complex things that most 3 year olds talk about. Here is an example of our current exchanges:
Tessa: "Mommy, I have owwie on my finger."
Me: Oh no...how did you get an owwie?
Tessa: "Holding my hand."
Me: Who was holding your hand?
Tessa: Conan (from school)
I can now ask her who is in her class and she will tell me everyone. There is:
Reagan "Wae gah"
Conan "Cogan"
Caleb "Ca duh"
James "james"
Mrs. Barnes "Bombs"
Mrs. Sonke "shon kee"
Mrs. White "why"
She starting to put endings on her words now which is something we've been working on quite a bit lately. Cat is now "ca-T" and not "ca" It's so exciting to see other people be able to communicate with her. Granted, she's not completely there yet, and we've still got lots of work to do, but it's amazing to see how much progress she has made.
The past few days have been quite busy for us. Tessa had her Occupational Therapy Evaluation yesterday and her Physical Therapy evaluation today. Here is a run down of what I've learned:
OT:
The OT (Occupational Therapist) believes that all of Tessa's issues are related to her vestibular system being out of whack. Your vestibular system controls much more than just balance. It basically serves as an organizational information processing area. Because Tessa isn't getting the proper input from this area, she isn't able to organize her body like a normal child would. The OT said she has a lot of motor planning issues. I thought she was just weak, but it's more that she isn't able to figure out how to coordinate her muscles to do certain things. That contributes to a lot of her difficulty with everyday tasks like putting on her shoes, etc. Also, when she's getting lots of vestibular input, she exhibits other sensory behaviors, such as tensing of muscles, putting things in her mouth, etc. This is Tessa's way of organizing all the information she's getting that isn't being perceived properly. She's trying to figure out what exactly the information is through the rest of her senses. When Tessa was on the swing (a square platform that hangs from the ceiling that children can lay down on, sit up on, etc.), she had a lot of these sensory behaviors, especially when she was laying down. The OT said that when she's spinning and laying down, it gives her A LOT vestibular input. It's good for her. So, I imagine we'll spend lots of time on the swing during OT. Thankfully, Tessa has figured out how to handle these things mostly on her own. Many kids just can't handle it and freak out...but Tessa has done remarkably well figuring out how to help herself with these issues. For that, we are incredibly blessed b/c life could have been a lot rougher around here. Most of Tessa's behaviors are considered Sensory Seeking...which means that she's looking for ways to get input from various things because she's not getting the proper input from the vestibular system. With practice, she will work through this stuff and find appropriate ways to handle these things on her own. The OT said she was amazed at how bright Tessa was. I think that in the fine motor category, Tessa is doing wonderful, as she didn't have much to say about that stuff. There is a waiting list for OT, though, so I'm not sure when we'll be able to start. I definitely think this the particular therapy she REALLY needs right now.
About her food aversions/pickiness, the OT mentioned that it's probably not so much that she's picky, but that she's not able to organize the food in her mouth b/c she can't coordinate her tongue properly to get it into one solid ball to swallow. So, Tessa, tends to shy away from foods that break apart in her mouth. She much prefers breads and things that are easier to swallow. Anything that has mutiple pieces, she has a hard time eating (soups and mac & cheese, etc...so she says she doesn't like it). It makes sense to me now. The OT suggested seeing a therapist who specializes in feeding issues to help us work those things out...b/c it's incredibly hard to find healthy foods for her that fit her "preferences" so I think we'll try to work through those things and help her figure it out.
PT:
The main thing that came out of Tessa's PT appt today is that Tessa needs orthotics in her shoes. These are inserts that will help her feet maintain the proper shape. Right now, her feet kind of "slouch." Basically, her tendons/ligaments are weaker there and so her ankle bone is too close to the floor (not directly above her foot like it should be). They called this pronation. The orthotics will help to stabilize her feet and give her an arch (which she does not have at all right now). It will also give her sensory input and give her a better idea where her feet are "in space" (another thing dealing with the OT...she has a difficult time knowing where her body is in space, b/c her vestibluar system isnt' telling her. That's why sometimes she'll go and push someone...not out of malice, but more out of "You are there and I am here...now I know and can feel it.") The orthotics will hopefully give her more confidence b/c she will be able to feel her feet a little better. That's goal. Right now, she is not really on par for the course, but isn't terribly behind. She needs help with jumping and stairs. She can't jump off of things or jump forward and she's not capable of going up and down stairs by herself yet, without holding onto anything. The therapist seemed to think that Tessa would only need PT over the summer and coule very likely be close to her peers by the end of the summer. This is exciting, b/c my main goal in all of this is to get her so she's better able to interact socially. These physical delays combined with her language delays have made it incredibly hard for her to interact with other kids, even though she really wants to. The PT also said she is hyperflexing her knees a bit and is way too flexible. This is due to her poor muscle planning. Her muscles just aren't "ready" all the time to do the things they might need to do. Tessa will start PT in 2 weeks...so that's exciting. Her PT also is getting us a referral for Hippotherapy, which is horseback riding therapy. It's incredibly helpful for her vestibular problems...and I'm sure Tessa will LOVE it. I'm really excited for her to start that, but that may be a long time away.
Overall, I'm very pleased with the way these therapy appts have gone. I have known about all of these issues for a long time, but haven't really understood how they were all connected. Well, I take that back...I had no idea about her feet and how she was walking and standing incorrectly. The knowledge that I have gained from both of these women is invaluable for us in learning how to deal with Tessa. It has really changed my perspective on her "misbehavior." It is still misbehavior and needs to be stopped, but I think it helps me to understand that many of these things she's not doing to get into trouble. She just really needs help finding other appropriate ways to deal with these things.
Now if they could just get her potty trained. :) Still working on that one.
Sara
Monday, April 17, 2006 2:09 PM CDT
What a week! We moved into our new place on Thursday/Friday of last week. We definitely aren't settled at all, but it will be quite awhile before we really are settled. There is a lot of construction and remodeling going on here. We bought a shopvac and that seems to really be helping with the construction debris.
What I'm really writing this journal about, though, is Tessa's first day of school. Today, Tessa went to her first day of preschool here. When I picked her up today, I was instantly affirmed that we made the right decision. I had to register her today and got to speak with the principal for a few short seconds. They told me that Tessa got to meet the Atlanta Braves mascot today. Then, when I picked her up from her class, there was a paper in folder stating that her teacher was the Atlanta Braves teacher of the year for 2006. Wow! I definitely realized that this is the place that God wants us. I think Tessa is going to do amazing in the class, as does her therapist and just about everyone else who knows anything about hearing impaired kids in this area.
Her teacher told me that Tessa spoke to her today and she could understand most of what Tessa said. That's a plus, in itself, because many times Tessa doesn't talk much to people she doesn't know. She talks like a maniac at home, but in public she just kind of stares at people like they are crazy. She didn't nap at school, which does not surprise me. That will probably be a battle that will take awhile to win. She's not fond of sleeping in places other than her own bed. Even at the new house, we're having a bit of a problem getting her to go to sleep. She's been staying awake in her room for 2 hours every night.
Her teacher also told me today that she definitely thinks Tessa needs physical and occupational therapy. When I asked her why, she said that Tessa should be able to go up and down stairs one foot after the other, but instead, Tessa needs to be holding onto something or someone and brings her feet up together on each step. She said that is not normal. She actually said that Tessa is the most unbalanced child she's had in 9 years. Guess that says a lot. Actually, it makes me feel good that someone else acknowledges that Tessa is NOT a normal 3 year old when it comes to physical ability. Everywhere else, we've gotten the run around. Everyone says "Well, all kids with hearing loss have some degree of balance problems. She'll work through it." Finally, in Athens, her teacher recommended that she get PT and OT evaluations because her core muscles are VERY weak, as is the rest of her body. She gets frustrated easily with simple tasks like flushing the toilet. Also, it's very hard for her to use the toilet on her own because she can't do everything she needs to while on the stool. She has to do it off the stool b/c of her balance and then she has a hard time getting onto the stool. That's probably one of the obstacles in potty training. She's still not officially trained. She won't really tell us when she has to go. I'm really getting sick of people saying "When she's ready she'll do it." I think she was ready a long time ago. She goes when I put her on the potty and she doesn't protest much anymore (she was for awhile). She is capable of holding it until we go to the potty, usually. She just won't TELL me. She does have poop accidents pretty frequently, but I am not so concerned about that right now.
Anyhow...that's Tessa's life in a nutshell right now. She's a pretty busy little girl. My mom said "Does she ever stop moving?" While she's not very phsyically adept, she does tend to fidget a lot (just like me). Like mommy like daughter, I guess. :)
Hope everyone had a wonderful easter. We ate two easter meals at fast food restaurants. Not exactly our type of easter dinner, but when you are moving and have no kitchen, well...what can you do?
Love,
Sara
Monday, April 3, 2006 2:47 PM CDT
Oh boy, has it been a week. We've had some interesting things going on here. We're going to be moving into our new place next week, but things will be a wreck because we'll be remodeling the kitchen. However, we want to get over there asap so that Tessa can start school there. It'll be interesting and hectic and tiring. But, after this week, I can't wait to get over there.
Last Thursday evening, I got a call from Jonah's mom. Jonah is 7 and he rides Tessa's bus. I meet the bus at his house, so the bus driver doesn't have to go too far to our place. I did it to make it easier for everyone. I wait in Jonah's driveway for the bus and get Tessa's harness on her (she wears a harness made of seatbelts that clicks into the seat, instead of being in a carseat on the bus). Tessa didn't go to school on Thursday because she was sick (and I'm thanking God that she was now!). Anyhow, Thursday evening, Jonah's mom, Courtney, called me to tell me that something happened on Wednesday morning on the bus. Let me preface this by saying that I've NEVER gotten a good feeling from this bus driver. She very rarely speaks and when she does, it's never very nice. She never says "thank you" or "please" or "good morning" to the kids. She helps me get Tessa into the seat on the bus...and that's about it. Her name is Christine. On Thursday afternoon, one of the other girls that rides on the bus showed up at Jonah's house with her mom. They are hispanic and the mom is not confident about her English skills, though I could understand most of what she said when I spoke with her later. Maria, the mom, shared with Courtney that Ellie (Maria's 13 yr old daughter) said that the bus driver pulled over and grabbed Tessa's face and shook it and then shoved it back. Ellie didn't have her CI on (all 5 kids that ride this bus are hearing impaired), so she didn't hear what the bus driver said, but she saw it. Ellie said Tessa started crying really hard and hyperventilating (you know how kids are when they get really upset). She went to sit with Tessa and tried to calm her down. Ellie's mom was very upset as she was telling Courtney this story. Maria wanted to make sure I knew, so Ellie showed her where Jonah's house was. Courtney was able to get my phone number from the bus driver and immediately called me. Of course, I was very upset about this. Tessa is a pretty mild mannered kid. She can get loud sometimes, but I also know that she is not sensitive to discipline. She doesn't really seem to be bothered by physical discipline much, so for her to be crying that hard after this instance makes me feel that the bus driver must have really hurt her.
On Friday, I wrote a detailed letter about the incident (as much as I knew of it) and requested that something be done about it as soon as possible. I told them that I would not put Tessa back on the bus with that bus driver. I delivered it to the superintendent, the direction of special education, and the bus supervisor. Courtney and another parents, Sue, whose daughter also rides the bus, both called to complain. Both were met with "well, we'll review the tapes." Both of these parents have complained before about this bus driver.
On Sunday, Maria, Sue and I met to discuss this situation. Ellie shared her story, which was very hard for me to listen to. The bus driver does not let the kids talk, sign, play, or sleep on the bus. Tessa was playing and asking Ellie for a drink and Ellie told her she didn't have one. Ellie said Tessa was signing "bus drive" and "hi" and that overall she seemed very happy that morning. She was probably being loud, but she's 3! 3 year olds can be loud sometimes. The conclusion from this meeting was that Sue wanted to drive the kids to school, but there was one child whose family didn't know anything about this, and no one felt comfortable leaving him on the bus alone with the bus driver, so it was decided that Sue would ride the bus with the kids. She called Christine that night to tell her of her plan and Christine refused to allow her on the bus. So, fortunately, Ellie was able to show her mother where the last child lived and we were able to get in touch with his mother. So, this morning Sue drove the kids to school.
The county wanted to just put an aide on the bus, but I told them I would not put Tessa on the bus with that bus driver again. The poor girl is probably scared of her now. So, thankfully, they got a new bus driver. I'm afraid though, that this lady will be driving another bus with young children on it. I hope she isn't. Obviously she cannot control her temper.
Her story is that Tessa was screaming and it was foggy and she couldn't concentrate with the noise. That's understandable. So, she pulled the bus over and raised her voice and told Tessa to be quiet. She claims she did not touch Tessa. However, all 3 of the other children on the bus at the time say she did. They have no reason to lie about it. Conveniently, the tapes are already taped over. I guess they rewind them every night and tape over them the next day. Seems silly to me. Guess parents have to complain before their kids even get home from school to make sure the tapes aren't taped over! The bus driver also claims that she does allow the children to sleep, talk, and sign. I know she does not let Tessa have any toys on the bus and she takes her backpack away from her as soon as I walk off the bus.
I'm just so frazzled over this. How is Tessa supposed to learn to respect authority when people who are supposed to be her role models treat her like this? She's so vulnerable at this age and she doesn't need anyone else looking down on her, treating her like there's something wrong with her. I want to tell the bus driver what I think about everything. I want to tell her that Tessa is every bit as human as she is and though Tessa screaming may have been annoying, that Tessa did not deserve to be treated like that. How would she like it if I grabbed her face and shook it in anger? I don't do that to Tessa and I don't expect anyone else to ever lay a hand on her in that manner. I am beyond mad about the whole situation. I can't fathom why someone could be such a cruel person to kids...why she won't let kids be kids. Gone are the days of "children should be seen and not heard." Well, I believe there are some instances where children need to learn to be quiet, but I don't think the bus is one of them. I'm not there to communicate that to Tessa. If I were there, I surely would have been able to tell her to be quiet and she would have listened, but obviously this lady has no skills to communicate with Tessa. I don't understand why she was driving the bus in the first place. It just makes me angry, if you can't tell.
I suppose that's enough ranting for now. I'm going to try to post some new pictures of "the screamer." Hope all is going well. Can't wait to get to Cobb county and move into our new place. woohoo!
Sara
Monday, March 13, 2006 1:44 PM CST
Well, it's been another month here in GA. The weather is changing and I'm loving the spring! It's so beautiful. The weather was in the 80's yesterday! Tessa's been enjoying the opportunity to go outside and play. Today it's slightly cooler, but it's still very comfortable and the windows are all open in the house.
Things are great here. Tessa is continuing to snowball in her language acquisition. She says things now that blow my mind. In the car today, Selah was screaming (she has a really shrill screech that she enjoys making) and Tessa said "No! Selah stop yelling!" Of course, Selah didn't listen, but maybe eventually she will. Tessa is really loving the opportunity to play with her little sister more and more each day. Now that Selah is mobile, though, Tessa gets a little annoyed with her because she always wants to read the book that Tessa's reading or play the game that Tessa's playing. I have caught Tessa sitting on her sister occasionally, but Selah seems to handle it quite well. Of course, Tessa gets a timeout for that one, because she most certainly knows that is not allowed. She's really starting to understand discipline too. We have a little routine, which I've been perfecting. When she gets in trouble, she goes to timeout and she sits there for 3 minutes (because she is 3 years old). Then I (or Stephen) comes over to her and we get down on her level and talk about why she was in trouble. She's really good at remember what she did wrong. I will say "Tessa, why are in timeout?" and she'll say "I pushing Selah" or "I throwing cup." Then if she hurt or attempted to hurt someone, she goes to apologize to them. It seems to work pretty good at this point.
She of course loves the cats at my parents house. She spends part of her day every day chasing one cat in particular. Zoom doesn't like to be anywhere near Tessa, so Tessa just crawls around after her under the table. She never actually gets Zoom, but she seems to enjoy pretending to be a cat.
My parents next door neighbors have a little girl who is 3. Tessa has really enjoyed getting to play with "ma man ah" (Savannah). Savannah seems to really enjoy playing with Tessa too. We have a Little Tikes alligator teeter totter that they play on together. I hope that where we move, we are able to find some kids in the neighborhood for Tessa to play with.
We do have a house under contract right now. We had the home inspection and there were some things wrong with it, but we compiled a list of things that we wanted the current owners to fix before we bought the house. We'll see what happens with that. We're still waiting to hear back from them to see if they'll be doing what we're asking them to do.
On a completely different note, there is an email group I belong to called CI Circle. It's a group from parents of children with CI's. A couple days ago, there was recall on the brand of implant that Tessa received. They have a supplier who was supplying them parts with too much moisture in them. This raises their failure rate to 2% as opposed to 1%. That doesn't necessarily mean that Tessa's CI could or will have this problem. They are not recalling any devices currently implanted. It is not an FDA mandated recall, just a voluntary recall of the implants that are not yet implanted from CI surgeon's offices. I'm a little frustrated because there are some people on the group who are being quite malicious about this company, who is VOLUNTARILY recalling products that they could still be implanting if they wanted to. Advanced Bionics (AB) will lose money on this, but obviously their main concern is the integrity of their products. A couple of the other parents whose children were implanted with other devices seem to think that their company is so much better b/c they haven't had any recalls. First of all, their company is based in Australia, which means that their standards for possible recalls are not as strict. Also, who knows what might possibly be wrong with their implants that they aren't telling because they want to make more money. I think it's quite noble of a company who COULD continue implanting these devices to voluntarily recall devices that have only a 2% chance of failing. Ahhh...but I"m just a parent hoping and believing I made the right choice for my child. She's doing wonderfully and has no signs of fallure and so we'll continue to hope and pray that her implant will take her a long way before it decides to fail. After all, most implants fail after a long time. They really have no idea how long these things will last, as they have only been out for a relatively short time.
Sorry about my ranting...I guess I'm just frustrated that a company gets bashed for being honest and trying to iumprove the quality of their product because they know how much their clients/patients rely on it.
Sara
Friday, February 10, 2006 8:40 PM CST
Hmmm...it's been 3 months since I've updated. Either you all are waiting with baited breath, or you've given up on ever getting another update. :) The last 3 months have been pretty crazy, but have gotten us where we want to be and most of all, where we think God wants us. Our whole family is now in Georgia, living with my parents.
For a while, the girls and I were down here and Stephen was still in Virginia, staying with some friends. It feels so good to have him here with us. We missed him so much while he was gone.
We have had some interesting decisions to make. Stephen got a job down here. He actually accepted a different position with a company located down here, but when he put in his 2 weeks notice, his current company asked what they could do to keep him. He told them he would need more pay and would need to be here in GA. They certainly did that....and we are so excited that things seem to be going as planned. Tomorrow, we are going on our 3rd house hunting expedition with our realtor. This will be our first one without the girls (thanks to grandma who will be watching them at home)!! I have a feeling we'll get a lot more accomplished without having to take the kiddos in and out of the carseats.
Tessa is doing great. We've gotten her into a school system down here and she is also in therapy with a therapist that used to work at Johns Hopkins. She moved down here in October. She really seems to keep me informed about things I can do with Tessa and even gives us a bit of optional homework. That's great for me, as I do much better when things are laid out for me. I'm not exactly the most creative person. Tessa has learned the joys of the television, unfortunatly. I haven't been great about keeping her away from it, as it keeps her out of trouble in a house that isn't really childproofed. I have been trying to let her be more independent, so I think she's starting to grow out of the "get into everything" phase. Of course, as soon as Tessa gets out of it, Selah will be starting it. Tessa loves watching Dora and Diego and not only sings the Dora song (d-d-d-d-d Dora!), now she sings "I'm the map, I'm the map, I'm the map I'm the map, I'm the map!" If you've ever seen Dora, you know what I'm talking about. She's also getting quite adept at singing the first few bars of Twinkle Twinkle...and is starting to the last fews bars as well. It goes something like this "wing-l, wing-l, wit-l staaa, how I gong ga what are? up ubub blah blah blah blah(gibberish), then more gibberish, but I hear diamond and sky equivalents. wing-l wing-l wit-l staaa, how I gong ga what are." It's very cute. She also sings her "bay bee c's" (abc's). I really need to get a tape recording of her singing on here.
She's moving on to more complicated phrases and continues to progress in every day language. She doesn't necessarily carry on conversations yet...and doesn't understand to answer questions like "what did you do at school today?" Most times she says nothing but once she said "spool not listening" (I'm assuming she got in trouble for not listening at school). She's quite cute when she said school (spool). She's starting to saying things spontaneously that I didn't know she understood. For a while she's been saying "meeer mommy" (come here mommy). Now, when we're getting in the car, she says "i'm coming, Selah coming, daddy coming, mommy coming, maamaa (grandma) not coming." It's great that she's understanding these concepts.
School starts very early for her. She gets up at 6am and she and I drive about 10 miles to a bus stop at another child's house. They didn't want to have to bump all the kids up 20 minutes to pick her up, so I agreed to have them pay me to drive her to the bus stop. It's not very fun, especially in the cold, but that's okay. She goes to school on Monday, Wednesday, and Thursday. Tuesdays we go to therapy in Atlanta and Friday's she has off, so we are making it a habit to go to the small community library here. She LOVES it...and pulls all kinds of books out. We have a little bookworm, which I'm certainly not complaining about. She can already tell the difference in some words like cat and hat.
We're doing a lot of research as to the best place to live for her schooling. We're looking at 3 different counties, all of which will probably be suitable. There are pros and cons to all of them. Forsyth is closest to my parents, but doesn't have the highest rated school system of the 3 counties. North Fulton has good schools and a program, but is quite congested. Cobb has the best rated school system, but is the furthest away. Overall, I think Tessa will do fine in any of the counties, as the all have good systems. Forsyth doesn't have an established Hearing Impaired preschool, while the other 2 counties do. It can get overwhelming at times, but we are so blessed to have the flexibility we do with where we live. We're really looking forward to getting a place, and it looks like we'll be able to get a pretty decent place here, including 4 bedrooms, a basement and nice yard. We could buy a new place, and honestly I thought we would at first, but after seeing the older houses, we like them a lot more. The lots are excellent and the houses are larger and have more "character." Of course, they will require a little more upkeep, but I think we can manage that, though I'm sure it will be hard. Our townhouse didn't require a whole lot, which was good because Stephen was working so much, but already we see the benefit of him working at home. The girls and I are pretty good about leaving him alone during the day, but the evenings are much more laid back. I really think this is going work well for us.
Well, I suppose I should update on Selah's page and progress. I have a bunch of new pictures on the camera, but don't know where the cord is to transfer them. I supposed I could just take the card out of the camera to put them on the computer....so I might have some new pictures up.
Love,
Sara
Thursday, November 17, 2005 1:57 PM CST
It's been awhile since I last updated and things have been really crazy here. We've made big decisions and we're acting on them, so I haven't had much time to update. We are moving to be closer to my parents and recently put our house on the market. I thought it would move faster, but I guess the market is really cooling down here. We've only had 2 people come to look at our place. It's kind of discouraging for me, as I put a lot of time and energy into getting it into shape. That week was rough for all of us. The girls weren't getting as much attention as they were used to and Stephen and I were working hard. The living room now has fresh paint and the house is spic n span.
Tessa is doing great now. She had a wonderful day at school today (her mainstream school). Her teacher called her a "chatty cathy." We've been having a problem with her hitting her friends, but she didn't do that today. I think she's learned it from some of the kids at church who are rougher. Unfortunately, she turns around and does it to the kids who are nice. Today, though, she did good. Also, she hasn't had any accidents since the one where we were warned about her having any more. Actually, I think she did have one, but the teacher said it was fine and wasn't a big deal. I think Tessa and the teachers daughter, Gabby, get along really well. Mrs. Short (her teacher) told me that Gabby was going to have a really hard time when we leave. They are less than a month apart in age. They are so cute together. Then Tessa comes home and says "Gabby friend" or "Gabby Pushing" (I'm not sure if she's saying she was pushing Gabby or Gabby was pushing her). Gabby yells "bye bye essa!" when we leave. The kids at that preschool are SO friendly and loving. Today, we were a little late leaving, and the other kids started eating lunch (some kids stay all day) and Tessa was upset b/c she couldn't stay and eat. The kids all came around her and hugged her, on their own. It was so sweet.
Tessa is really talking a lot now. She's communicating more than ever and not just labeling things now. She tells us "move please" and "mommy sit." Her new favorite pastime is giving Selah tons of toys. She pulls out her bins and gives her all the little people (which aren't really that little and are not choking hazards). She gets Selah's toy basket and brings all the toys to Selah. This is a new thing, now that Selah is sitting up for extended periods of time. Selah loves it! Tessa is a GREAT big sister. We couldn't ask for anything more. Sometimes she's a little rough, but only b/c she's trying to help Selah or make her feel better.
Well, I better get running. We've got 5 million things to do. We're leaving tomorrow to visit my parents for thanksgiving and do a little job searching. I'm going to post some new pictures, too.
Love,
Sara
Friday, October 28, 2005 3:08 PM CDT
Today, Tessa's school had a pumpkin party. It was fun and Tessa and the other kids had a great time showing off for their parents. I learned that at school Tessa is telling them when she needs to go potty. hmm...wonder why she's not at home! Guess I need to be a little more proactive on that and figure out the problem. I think I need to just put her in underwear and let her figure it out. Obviously, she's capable of it! We're still not there on poop yet, at home or school, but we're getting closer. Unfortunately, she's on the verge of getting kicked out of her mainstream school, as she's had too many poop accidents there. I don't know what we'll do then.
The school system has found a school that they feel is good for her (she'll still be in the mainstream school). I have spoken with the teacher and she doesn't sound friendly at all. I'm trying not to make judgments, but it's hard when you feel like the school is just trying to run over you. They want to take away some of the speech services they offered. We have to have another IEP meeting to take away some of the hours as well (as this new school is only 3 1/2 hrs long). I'm going to try to observe the class so that I can see what exactly takes place in the classroom and determine whether it would be a good place for Tessa.
What I really want for her is to be with a teacher who REALLY knows what they are doing in terms of cochlear implants. That's not going to happen in our school district, I guess. Legally, they should send her to another district (which would be more expensive for them, so they are trying to sidestep it). She should be in a class where her needs are met. The people who are working with her have NO idea what her needs are because they have never worked with CI kids. I'm frustrated that they think they can determine to a T exactly what she needs and where she should be, giving little regard to me, her parent! Do they REALLY think they know her better than I? It's all really a very infuriating problem. I can't stand seeing them throw her around into whatever class they have available. However, I'm trying to give them the benefit of the doubt and will see what I think about this class. I'm not exactly a confrontational type person. I can write in a letter exactly how I feel, but am not very eloquent when I actually say it. Stephen is hoping to come to this next meeting (on Friday) and Jennifer (her therapist at JHH) will be calling in as well. I don't want to be mean or rude to this teacher off the bat or make her feel as if she isn't capable of teaching my daughter, but I also know that there are other special needs kids in her class, who have much different needs than my child.
Sally (Tessa's teacher from last year) isn't happy with me. That is apparent by the way she talks to me now. She probably feels like I'm one of those parents who demands too much. She has a son who has severe disabilities. Sometimes I want to tell her "If the school wanted put him in a classroom where they would feed him with a spoon, rather than letting him learn to feed himself, would you be satisfied with that?" I know it's a completely different situation, but she should understand to some degree that Tessa has specific needs...that's why it's called an "INDIVIDUAL Education Plan." It doesn't help her to be thrown into a class that sorta kinda meets her needs because that's all the county has right now. That's NOT good enough.
So, it's because of this and because of Stephen's work situation that we are actually starting the ball rolling on the moving process. We're going to be working on the house this weekend and he is getting his resume up to par (for real this time). We will be looking near Atlanta, probably in Roswell. We have heard from other CI parents that there is a good school district there with a good program for CI kids. The housing is significantly cheaper. Stephen hopes to have some interviews over thanksgiving. We may go down and stay with my parents for that week.
It's a hard decision to make. We have a wonderful friends here and a great church. We don't really want to leave them, but right now, we have to do what is best for our own family. I have no doubt that God has a church down there that's perfect for us. We'll see what happens. I'll definitely keep you all posted. It's going to be a crazy 6 months, most likely, but I think it'll all be worth it and we really feel like NOW is the time to do this. It gives us the opportunity to let our children grow up close enough to grandparents to enjoy them. We'll be able to visit my parents on the weekends and see Stephen's parents on longer weekends and holidays. We might actually get some REAL vacation time because we won't be using it all to see family. Who knows what the future holds, but we have the hope that God's got something great in store for us.
Love,
Sara
Thursday, October 20, 2005 1:05 PM CDT
Who ever knew a stay at home mom could be so busy? Yesterday was a very busy day for us. Tessa, Selah and I went to the pumpkin patch with her mainstream preschool, even though she was scheduled to be in her TC preschool. She had a blast picking her pumpkin, even though she kept tripping over the pumpkin vines. The hayride was fun and there were lots of other activities at the pumpkin patch. They got to eat a picnic lunch, see and feed some sheeps, goats, chickens, geese and a cow that wouldn't move. They had a fun tube slide made of a kind of black plastic drainage pipe elevated on a big mound of hay so that the kids could climb up the hay to go down the slide. Tessa is such a slow slider that she was about getting run over every time she was sliding down. Also, they saw a real beehive and got to swing on some ropes hanging from the ceiling of a barn. I was shocked she could do this, but she did quite well. I'll be posting some pictures of all of this fun stuff.
The second event of yesterday was her IEP team meeting which didn't go quite as well as I would have hoped. Our goal going into this meeting was to request that the school pay for her to go to a mainstream preschool. Unfortunately, her Johns Hopkins therapist was sick and had to call in for a conference call instead of actually attending the meeting. There were 5 people present: Tessa current teacher (Mrs. Davis), her school speech therapist (Eileen), her old teacher (Sally), the administrator (Cindy Stanley) and me (and the girls of course). I think I really peeved the other people involved. Tessa's current teacher is VERY gracious though and doesn't seem to have a problem with me, and neither does her speech therapist. However, Sally was probably quite annoyed with me, as she knew I was trying to get the school to send her to her mainstream school and pay for it. They basically said they wouldn't because it's a mainstream school and they wouldn't pay for a typically developing child's education. Here is my reasoning for asking them to pay for her school (aside from not really having the extra money laying around ourselves):
Tessa would best be able to meet her goals in an oral school designed for hearing impaired kids with CI's. Her class would consist of other children with CI's and reverse mainstream kids and a teacher who is very experienced in CI techniques. Spotsylvania does not have a classroom that meets these specifications. They won't be having one anytime soon either, as I believe Tessa is the first one going through the system with a CI. I always knew my child would be a ground breaker. So, I feel the next best thing for Tessa would be a completely mainstream class with some assistance from the school system. They don't want to provide that though. Basically, what they agreed to yesterday was to research their other preschools in the county developmentally delayed children. These preschools use spoken language. My problem with that is that the kids are developmentally delayed, so I can't understand why they think that would help her. I don't want to sound mean, but how do they see that would benefit her to be with children who are not speaking well because they are delayed developmentally. I signed the IEP paperwork because Jennifer seemed okay with the proposed suggestion, but I'm going to talk to her on Monday about it and see what she says.
I am sad that Tessa will be leaving her TC preschool. She really loves the kids in there, and I'm sad that she won't get to see them anymore. :( But, we have to do what's going to help her the most in the long run and as parents who know their child better than anyone else, we feel that this would be the best placement for her.
I told Stephen this morning that I wonder if this is just another way that God is telling us to move. Maybe we need to move to a bigger city area for a few years so that she can get the preschooling that she needs to be mainstreamed. We aren't big city people, but for a few years for Tessa's benefit, I think we could manage. I'm not sure what he thinks about that yet, as he said we'd discuss it later, but I just wonder if it's another nudge by God saying "Okay...it's time to leave."
Tessa is doing great, though. She is speaking more and more clearly. At her mainstream school today, she said "bye bye Gabby" clear as day. It makes me want to cry everytime she does something like that. She continues to amaze me in the clarity of her speech these days. She still is leaving the sounds off the end of words (unless they end in "ee"). I wish there was a way to put her speech on here so everyone could hear her talk. Maybe Stephen can help me figure that out.
Well, I need to get some stuff done and put away. Hope the fall finds you all happy and enjoying the weather!
Sara
Saturday, October 15, 2005 9:18 PM CDT
Happy Birthday, Daddy! Those are the words that came out of Tessa's mouth numerous times today. She says "happy" very well. Birthday sounds more like "bu-ae" and Daddy is "da-eee". It is VERY apparent, though, that she is saying that. I worked on it with her this week so she could tell Daddy happy birthday today.
This week is the week of birthdays. I read somewhere that this is the most popular week of the year to be born. We have 2 friends who were born today and of course today is Stephen's birthday as well. We also have a friend whose birthday is the 19th, my sister in law is the 14th (or the 16th...I always get confused on that one). Then Mackenzie, Tessa's little friend, turns 3 tomorrow. Needless to say, we've spent the last few days eating cake. Mmm...Tessa doesn't mind.
Last night, we threw a surprise party for a little boy, Dawson, who turned 2 today. His parents are trying to sell their house, so they weren't able to throw him a party at their house. It was very fun and Tessa had a blast. She's starting to interact better with other children. We brought home some cake from that party. Then today, we went to Mackenzie's party at the Stuffy Bear Factory. We have cake from that too. Tessa got to make a stuffed elephant and pick out an outfit. She kept picking the little motorcyle leather outfit, but I finally convinced her that maybe another outfit was a better one. She ended up picking the Doctor outfit. Then she got to name the elephant and she named him nothing other than "Doctor." So, today, she's been running around the house talking about Doctor, the elephant. She can say Doctor pretty well and she says "el-pan" for elephant. Stephen got to make one as well, since not very many children came to Mackenzie's party. By the way, Mackenzie is the daughter of the family that we lived with then Tessa was born. Mackenzie was born 3 weeks after Tessa. Aaron and Dawn moved up here about a year ago, I think. They live about 20 minutes south of us. Stephen picked a monkey and made him a soccer player and named him Francis, but then decided to rename him Ransom.
I was very proud of Tessa today. Mackenzie got a Dora Dollhouse and a bunch of furniture for it for her birthday. Mackenzie was being VERY possessive of the Dora Dollhouse and told Tessa she could open the rest of the presents. :) Tessa was VERY good and did not even try to play with the dollhouse. She got a little too close (about 5 ft) from it a couple of times and Mackenzie let her know that wasn't acceptable. Eventually, Mackenzie calmed down and they were able to play together. Tessa did not throw a fit at all. She was such a sweet little girl and was very nice to her friend. It's not always like that. I guess she was having a good day. :)
Tessa and I also went to JMU this past Thursday to participate in the study put on by Dr. Brenda Seal. We've been there a few times before. They are the ones who sent us the very detailed explanation of the sounds that Tessa was making about 5 months ago. It's nice going there because she gets to see some other kids with CI's, which are pretty rare around here. She does very well with them. There is an 18 month old named Lexi. Lexi's mom is deaf and recently got a CI (In June, I think). Lexi was implanted in March. There is a little boy named Alexander who is 4 and a girl who is 7. Tessa loves playing with the kids. In fact, the students who work with her in the study say that they have a difficult time getting the kids to play with them, instead of only playing with each other.
It's very fun for us to go to JMU and it's good for me because I get to talk to other parents about different issues that face families with CI's that other parents may not quite understand. We talked about holidays and how important it is to give them the language surrounding holidays. Dr. Seal told us to TALK TALK TALK to them. Sometimes I forget to do that. We talk a lot, but I don't always explain everything to her. That's something we have to be more diligent about so that she can catch up to her peers.
We're still trying to potty train. She was doing well for a while and even starting to tell us she needed to go potty, but then she got sick and we had to go back to pullups. So, now I'm getting very frustrated. I'm trying not to show it, but my patience has been wearing thin for some reason lately. I may just have to let her be in diapers for a week or so. She knows how to do it, she just doesn't want to. I know she'll catch on. We're trying the total underwear thing, but she just doesn't seem to care when she goes. I know she recognizes when she's going, because she'll stop and look down. She just isn't going to the potty when that happens. Oh well. I'm frustrated because I know she knows how to do it, she's just not doing it. I suppose she won't be in diapers at 10 years old, so I should just relax. We'll get there.
Hope you all are enjoying your weekend. We need to get to bed here.
Sara
Saturday, October 1, 2005 10:28 PM CDT
Well, today was Tessa's birthday party. She's now officially 3 years old (okay, so she was officially 3 yrs old a week ago). I look at pictures of her from a year ago and she seems like such a little baby. Yet, it was at her 2 year old birthday party that I announced we were having Selah to all of our friends. Ahh, how life has changed. I have a lot of exciting news to report in terms of Tessa's progress.
Tessa had a formal evaluation by her speech therapist on Tuesday. The eval brought wonderful news....and news that I didn't expect to hear for years down the road. Tessa has surpassed the average child her age in verbal receptive language. In layman's terms, Tessa understands more spoken language than the average three year old. She is currently understanding spoken language on the level of a 3yr 5 mo old. How did she make this leap in 8 months time you ask? Who knows? but I get the feeling that her therapists have never seen something so amazing. God blessed her with a quick wit and sharp intellectual skills. I was shocked when her speech therapist told me. What beautiful words to hear. Her expressive language (the things she says) sits on a 2 yr 4mo level, which is still awesome, given that she's only been hearing for 8 months. She is talking more and more these days. She doesn't always get the word order right, but she's ever starting to make sentences. About a week ago, after she got her Dora present from us (a Dora doll), she asked "Dora shoes where?" The word order isn't quite there yet, but it will come. She consistantly leaves the ending off of words. Pig is "pi", dog is "da", milk is "mi", etc. She does get some words that have more syllables. For instance, waffle is "wa-oool", and Dora is "do-wa". She loves that one. So, there's a glimpse of her progress in terms of formal evaluation. Now I'll give you the sappy stuff.
Let me tell you about her birthday party. Okay, so maybe I scheduled it a week late, but I'm glad I did, as the weather was beautiful and last weekend was rainy. She did SO great today. We had her party at the YMCA playground that is handicap accessible. It has ramps and swings that can accomodate severely handicapped children. It's a great playground and ALL the kids love it. So, we had her party there so the kids could have a blast. Unfortunately, Stephen wasn't able to make it as he had to fly out today, when he was thinking he'd be able to fly out tomorrow. We were both really bummed about that. Tessa and I (and Selah too) got there at about 11:45 (the party was scheduled to start at 1). A friend was supposed to arrive early to help out, but she wasn't able to make it until about 12:45. Needless to say, I was a little frantic. The playground is really high and I like to be with Tessa when she's up high, as there are places where she can jump or fall off (little doorways from climbing apparatus for the older kids). She's smarter than I give her credit for, though, and I'm pretty sure she knows better than to step off of one of those areas. Nonetheless, I'm the hoovering mother, though and am still worried about it. Today though I got a little less paranoid. Anyhow, I wasn't able to get everything carted from the car to the pavilion because I didn't have my friend to watch Tessa and Selah. Once she arrived, though, it was smooth sailing.
There were quite a few kids there. Many were from church and there were a few from her preschool class. I'm SO glad they came. All the kids had a blast eating the food (mostly cake!) and playing on the playground. It really turned out well. We couldn't have asked for a more beautiful day. I, however, am exhausted! I had to cart a lot of stuff back and forth. Tessa walked away with quite a few toys, including Dora the Explorer, which are her current favorite. She got lots of other cool stuff, too, that so far she's having a blast with. Time to move out the baby toys and replace them with the big girl toys!
The most special moment of her party was cake time. I made Tessa a kitty cat cake. I hope to make her cake every year, to show her how much she means to me and just take the time out to do something special just for her. I hope when she's older that maybe she can help if she'd like. I'm going to post a pic under the picture section of the cake (though it got a little damaged before I got a picture of it). Anyhow, all the kids gathered round and I was so sad that I didn't have my camera to snap pictures, but then again I would have missed the moment. They all sang happy birthday to Tessa and she was SO excited. She started clapping her hands and bobbing her head with this HUGE smile on her face. I really made my heart melt. Now, I think about where we were a year ago, when she would have heard nothing. Zip. Last year, when she turned two, it seemed nothing more than ritual...something that you do at all birthday parties, but it seemed so frivolous at the time, as I knew she wasn't hearing it. It was almost like it was just nailing it in deeper that she indeed could not hear a thing. However, this year, it seemed filled with such promise. She very obviously heard her friends singing to her and she drank it all in, savoring every moment with delight. The smile on her face was indescribable. In a way, it's bittersweet to me. My girl is growing up and learning more. She is learning to hear and comprehend all the sounds around her and take delight in them, but she is one year older and I will never experience her 3rd year of life again. But, I look to the future with such hope now, with the knowledge that my little girl has been blessed by God. She has this amazing piece of equipment that will give her the ability to communicate with all people, not just signers. This past year has been amazing and filled with good things. I look back and see nothing but blessings from God. He gave good gifts to Tessa and us...a cochlear implant and a little sister. The year before seemed so...dreadful. Maybe that's not the word for it, but definitely not a good year by any stretch of the imagination. Surely God blessed us, but sometimes it was hard to see those blessings and many times I feel like I missed that year of our life because it was SO hard. But now I feel like we're "back in the game" so to speak. Things aren't always easy and life is hard work for all of us here, but it's good, and that's really all that matters.
Loving Life,
Sara
Thursday, August 25, 2005 2:10 PM CDT
A bump in the road
Before I start, let me explain some terms to you all, as this is pretty complicated stuff and has a lot to do with law. I'm also going to use abbreviations as well.
TC-Total communication-This is the preschool Tessa attended last year for 3 days a week where they speak and sign everything. Her teacher last year was Sally.
Mainstream/private preschool-This is where we feel Tessa should be, with a person to help her who is educated in the development of deaf children and cochlear implants.
Facilitator-The person who would be helping Tessa in the mainstream class.
Free and appropriate education in the least restrictive environment--This is what law dictates that any student with a disability to receive. For Tessa, we feel the least restrictive environment would be a mainstream classroom with a facilitator. This would provide her the most normal environment and help her learn to use her CI more effectively.
IEP-Individualized Education Plan. The law dictates that every child with a disability receives one of these. Yearly, the "team" meets for an IEP meeting and they discuss how to give the child least restrictive environment. Sometimes it can be end up as a battle between parents and school personnel, but not always. Some parents ask for too much, which makes the school personnel detest these meetings. Sometimes the school won't give enough, which makes the parents hate these meetings. It's all supposed to be about giving the child the best and most productive environment where the child can thrive.
IEP administrator-someone who makes the yah or nah decisions on big items, such as paying for Tessa to go to a mainstream preschool.
Typically developing peers--normal child with no disabilities and no language delays.
Reverse mainstream kids-typically developing children placed in the TC class as role models.
I think that about sums up that stuff.
So, at the end of last year in April, we had an IEP meeting for Tessa. Tessa's speech therapist from Johns Hopkins came (Jennifer). Sally was also there. We discussed Tessa's placement for this year. Jennifer and I felt that Tessa could thrive in a mainstream preschool. Jennifer really felt that Tessa needed to be around her typically developing peers. Being trained to work with CI children, she understands that they thrive best when around normal children with no language delays. That is where they really pick up the language. Since Tessa was using her auditory skills so well, Jennifer really felt that she would take off at a mainstream preschool. Sally told us, however, that the school system would most likely balk at that (she can't make those decisions but needs an administrator to make them). The school felt like they were meeting Tessa's needs for typically developing peers by having the reverse mainstream children in the class. Okay, so we compromised. Stephen and I planned on sending Tessa to the TC class twice a week and then paying for a private preschool twice a week with a facilitator from the school district coming in and working with the teacher and Tessa.
Last week I got a call from Sally reminding me that on Aug 25th (today) we were supposed to meet to review the IEP and set in stone Tessa's placement for this year. She also informed me, though I wasn't supposed to know yet, that she would not be Tessa's teacher next year. Mrs. Davis would be (we don't know Mrs. Davis). They were splitting up the class into 2's and 3's-4's at the last minute because they had lots of younger students wanting TC. Tessa would be in the older class. The 2's are only going to meeting twice a week for 2 hrs and Sally is going to be teaching them. Tessa would be with Mrs. Davis who is a teacher of the deaf, though not yet certified in early childhood education. Okay...I suppose we can handle that, though we certainly would miss Sally.
Fast forward to today. At the IEP meeting, which was attending by Jennifer, Sally, Mrs. Davis, and an administrator named Cindy, I was informed that there would be no reverse mainstream kids. ummm...excuse me?!? I thought that was part of the "deal." Those kids are in there to be language models for the HI (hearing impaired) kids...which is something Tessa NEEDS. Instead, they are planning on getting together with another preschool class (called Preschool Initiative) for a certain amount of time per week. I think this came about for 3 reasons. 1. The new teacher isn't equiped to deal with preschoolers, so the fewer the better. 2.) There were on 2 reverse mainstream applications and they need a large pool to pick from so they can get well-behaved kids that don't require much of the teacher for discipline (I could have gotten them more applications if they asked). 3.) The school didn't want to have to pay the 3rd person to work in the classroom. Last year, Tessa's class had a teacher, a full-time para and a part-time para. The part-time para was a requirement because there were reverse mainstream kids. If they don't have the reverse kids, they don't need that part-timer and they can put her somewhere else (in Sally's new class) without having to hire someone new. That's all nice and good for the school, but certainly isn't going to meet Tessa's needs. Frankly, I'm very irritated that they dropped this bombshell on me now, instead of telling me beforehand.
After the meeting, Jennifer and I were talking, and she told me they likely didn't tell me because they knew I wouldn't be happy with it. She told me that she honestly believes it is now the school's duty to pay for Tessa's mainstream preschool and to provide a facilitator because as the TC class is now, it's not going to meet her needs. It's hard in Tessa's situation because the goal is to get her communicating like a normal child. To do that, she needs normal role models in a normal classroom. At that the school says, "well, if she is in a normal classroom, then she doesn't need any intervention and we don't want to pay for it" (though legally they are not allowed to use that excuse and they never say that outright). So, the trick now is to convince the school that they are legally required to pay for Tessa's schooling. She is still deaf and is very far behind still. We are having a follow-up IEP at the end of Sept/beg. of Oct. This is technically to determine what services Tessa will be receiving in the mainstream preschool those two days a week she will be going. Sally will be going to observe and will come back with a report (as she will likely be the one doing the services in the mainstream school) and we will flesh out what Tessa needs. At that time, I will probably let them know I am pulling Tessa out of the TC school b/c it is not meeting her needs for oral language development. The signing classroom is very restrictive to her oral development at this point and now they can't pull the "reverse mainstream are typically developing peers" card. We don't want to stop signing with her at all, but in the TC classroom she can totally rely on sign if she wants. That will not help her at all orally.
So, that's where we are at right now. What a long post! I'm somewhat frustrated, yet feel bad. I know that Sally is caught in the middle. With an administrator looking over her shoulder, she has to be careful what she offers, yet she needs that administrator to say yes or no. As Jennifer pointed out, Sally was a totally different person with the administrator there. It's all a matter of legality and language that laypeople can't translate.
It's times like these that I feel bad for myself b/c if Tessa could hear we would have to deal with all this. I'm struggling to keep those thoughts out of my head. I know that God made her just the way He wants her and she's going to change this world for the better. It's easy sometimes to feel like it could all be different if she could just hear. She would be off the charts academically, I think...because she's so stinkin' smart already. Yet, I have faith that God has us where He wants us. And I know She is perfect just the way she is. There is a reason we have to deal with this stuff. Maybe it's not clear now, but it will be someday.
Hugs and Kisses to you all,
Sara
Thursday, August 11, 2005 8:39 PM CDT
Another good update, though I know it's been forever. If you read Selah's page, you know that it looks like she does not have LVAS (the problem that caused Tessa to lose her hearing). This is great news for us. We are really excited about it, though we do know that if she had it, we would have been fine. I'll be taking her CT films to Tessa's implant Dr so he can look over them and give us the complete all clear. They missed Tessa's LVAS the first time around, so I'm still a little nervous.
Anyhow...Tessa will be starting school in a couple weeks. I can't believe it's SO soon! This summer has flown by. At the beginning of the summer, I was dreading it. I wasn't sure what I'd do with both girls...but now that I realize there is only two weeks left, I look back and wonder "Where did it go?" Selah has grown up so much this summer...and Tessa has progressed SO well. She is saying new words everyday and I think we're finally at the place where she is attempting to say everything she signs. How wonderful that is! Some of it sounds nothing like the word and some of it is right on. Today I was trying to get her to say "kangaroo" but she just couldn't get any of the sounds out. But, she is now saying "butterfly." It sounds more like "bu bie" but it's noticable. We had a first this past weekend. We were at a conference for our church and the childcare lady asked Tessa what color balloon she wanted and she said "purple." The kicker is that the lady knew what she said. That's the first time Stephen and I have both witnessed that.
I hope to see it continue. I can't even tell you the number of times we've been somewhere and a stranger comes up to us and starts talking to Tessa. She just looks at them like "What are you doing?" and I just know they are wondering why Tessa isn't responding, after all, a child her size should at least be able to respond with her name. It's such a weird situation and hard to explain unless you've ever been in it. I never know whether to tell them her situation. We don't generally get bad remarks about her deafness or cochlear implant. In fact, most people are interested in it and want to know more. But, I'm still a little scared of meeting that one person who's going to treat her badly.
An interesting thing happened yesterday. We were at Wal-mart and as we were walking through the bakery section to the deli counter, an older lady was yelling some choice words to a hispanic lady with 3 kids. That's all I heard, but then they both proceeded to get on the phone and call someone. Anyhow...this is the first time I seriously thought about confronting the older lady. Many times, in public, I hear people using bad language...but this time, I came VERY close to saying something because now I know that Tessa can hear it. She doesn't need to hear that coming out of anyone's mouth. She doesn't hear it at home, so why should I settle for her hearing it in public? I realize that's going to happen. Maybe I'm just feeling protective of her new ability to hear.
A little update on Tessa's "official" progress here. She was tested about a month ago. This test was compared to the same test done 8 month prior (before Tessa got her implant activated). In terms of receptive language (what she understands), in spoken language, Tessa now falls in the 8th percentile. Honestly, it sounds low, but given the fact that she went 2 years without hearing at all, I think it's pretty high. That means 7 kids don't understand as much as she does out of 100. With sign included, she falls in the 31st percentile. That's more a reflection of our inability to sign and not her's. I have no doubt she'd be much higher if we were able to sign the more complex concepts that she needs now. With this information, they gave her a 6 month delay in receptive languge for spoken words and a 2 month delay for receptive with sign included. Overall, in spoken receptive language, Tessa made 15 months worth of gains in 8 months time. Pretty impressive, if I must say so myself. ;)
Expressive language is comprised of the words that she can communicate back to us. For spoken language, Tessa fell in the 2nd percentile. Basically, she's not giving much back yet, but even that has changed drastically since this evaluation (7/18/05). She has a 10 month delay in spoken expressive language. Not a shock there. For total communication (using sign and speech), she fell in the 19th percent with a 5 month delay. I was surprised, as 8 months ago, with sign language, she was age appropriate (meaning she had no delay), but the more I think about it, it makes sense. We aren't able to communicate the complex topics that she should be learning about now and she's concentrating on switching her sign over the speech. So, I'm not too concerned about it. I just didn't expect it. In 8 months time, she has made 9 months of progress expressively. I guess that's good, given that during those 8 months kids usually learn A LOT!
In the summary, the therapist said that her scores indicate a moderate-severe expressive language delay and a mild receptive delay. How amazing that is...she only has a mild receptive delay!! She is picking things up and understanding so quickly, I'm amazed. She has far surpassed their expectations for where she should be at right now. She's able to identify in therapy the difference between book, bike, and bake (beginning and ending sounds are the same).
There is so much more to write about. I've been learning a lot about her behavior as an infant (she arched her back and rolled back and forth etc.) from an email group I participate in. Evidently, most deaf children do those things. If only her pediatrician would have known. And I could also write for awhile about choosing her preschool and where we are in that right now, but this post is so long already. I'll try to update soon and I'm going to try to put some new pictures.
Love to you all,
Sara
Thursday, August 11, 2005 9:30 AM CDT
Another good update, though I know it's been forever. If you read Selah's page, you know that it looks like she does not have LVAS (the problem that caused Tessa to lose her hearing). This is great news for us. We are really excited about it, though we do know that if she had it, we would have been fine. I'll be taking her CT films to Tessa's implant Dr so he can look over them and give us the complete all clear. They missed Tessa's LVAS the first time around, so I'm still a little nervous.
Anyhow...Tessa will be starting school in a couple weeks. I can't believe it's SO soon! This summer has flown by. At the beginning of the summer, I was dreading it. I wasn't sure what I'd do with both girls...but now that I realize there is only two weeks left, I look back and wonder "Where did it go?" Selah has grown up so much this summer...and Tessa has progressed SO well. She is saying new words everyday and I think we're finally at the place where she is attempting to say everything she signs. How wonderful that is! Some of it sounds nothing like the word and some of it is right on. Today I was trying to get her to say "kangaroo" but she just couldn't get any of the sounds out. But, she is now saying "butterfly." It sounds more like "bu bie" but it's noticable. We had a first this past weekend. We were at a conference for our church and the childcare lady asked Tessa what color balloon she wanted and she said "purple." The kicker is that the lady knew what she said. That's the first time Stephen and I have both witnessed that.
I hope to see it continue. I can't even tell you the number of times we've been somewhere and a stranger comes up to us and starts talking to Tessa. She just looks at them like "What are you doing?" and I just know they are wondering why Tessa isn't responding, after a child her size should at least be able to respond with her name. It's such a weird situation and hard to explain unless you've ever been in it. I never know whether to tell them her situation. We don't generally get bad remarks about her deafness or cochlear implant. In fact, most people are interested in it and want to know more. But, I'm still a little scared of meeting that one person who's going to treat her badly.
An interesting thing happened yesterday. We were at Wal-mart and as we were walking through the bakery section to the deli counter, an older lady was yelling some choice words to a hispanic lady with 3 kids. That's all I heard, but then they both proceeded to get one the phone and call someone. Anyhow...this is the first time I seriously thought about confronting the older lady. Many times, in public, I hear people using bad language...but this time, I came VERY close to saying something because now I know that Tessa can hear it. She doesn't need to hear that coming out of anyone's mouth. She doesn't hear it at home, so why should I settle for her hearing it in public? I realize that's going to happen. Maybe I'm just feeling protective of her new ability to hear.
A little update on Tessa's "official" progress here. She was tested about a month ago. This test was compared to the same test done 8 month prior (before Tessa got her implant activated). In terms of receptive language (what she understands), in spoken language, Tessa now falls in the 8th percentile. Honestly, it sounds low, but given the fact that she went 2 years without hearing at all, I think it's pretty high. That means 7 kids don't understand as much as she does out of 100. With sign included, she falls in the 31st percentile. That's more a reflection of our inability to sign and not her's. I have no doubt she'd be much higher if we were able to sign the more complex concepts that she needs now. With this information, they gave her a 6 month delay in receptive languge for spoken words and a 2 month delay for receptive with sign included. Overall, in spoken receptive language, Tessa made 15 months worth of gains in 8 months time. Pretty impressive, if I must say so myself. ;)
Expressive language is the words that she can communicate back to us. For spoken language, Tessa fell in the 2nd percentile. Basically, she's not giving much back yet, but even that has changed drastically since this evaluation (7/18/05). She has a 10 month delay in spoken expressive language. Not a shock there. For total communication (using sign and speech), she fell in the 19th percent with a 5 month delay. I was surprised, as 8 months ago, with sign language, she was age appropriate (meaning she had no delay), but the more I think about it, it makes sense. We aren't able to communicate the complex topics that she should be learning about now and she's concentrating on switching her sign over the speech. So, I'm not too concerned about it. I just didn't expect it. In 8 months time, she has made 9 months of progress expressively. I guess that's good, given that during those 8 months kids usually learn A LOT!
In the summary, the therapist said that her scores indicate a moderate-severe expressive language delay and a mild receptive delay. How amazing that is...she only has a mild receptive delay!! She is picking things up and understanding so quickly, I'm amazed. She has far surpassed their expectations for where she should be at right now. She's able to identify in therapy the difference between book, bike, and bake (beginning and ending sounds are the same).
There is so much more to write about. I've been learning a lot about her behavior as an infant (she arched her back and rolled back and forth etc.) from an email group I participate in. Evidently, most deaf children do those things. If only her pediatrician would have known. And I could also write for awhile about choosing her preschool and where we are in that right now, but this post is so long already. I'll try to update soon and I'm going to try to put a new pictures.
Love to you all,
Sara
Saturday, June 25, 2005 9:45 PM CDT
Mmmm...Ice cream! I LOVE ice cream. Mommy even let me pick out my own flavor. Yesterday, we went walking around with some friends and we all walked to get ice cream at Maggie Moo's. I've never been there before. I told mommy that I wanted "pink" ice cream. In fact, I've been telling her lots of things lately. Yesterday morning, I said "bye bye animals" with my voice to the animals on my bed. Mommy and Daddy are so proud of me.
I've even been saying phrases like "how many." Some people can't understand me, but mommy and daddy do and they work hard to translate for others. I don't think my friends know how well I can speak yet, b/c they are so stinkin' loud that I can never get a word in edgewise.
I haven't really been a very good girl lately. On our trip for ice cream, after I got my ice cream and we were getting ready to leave, I bit my sister on the toe. I told her "sorry" but she didn't stop crying. Mommy wasn't very happy. Also, I've been taking my CI off and chewing on it, which is bad b/c mommy and daddy say it's very expensive. I even took it off and threw it in walmart yesterday, so mommy has to keep a close eye on me now!
Mommy has been trying to play with me more because she knows when she spends good time with me, I behave better. She says that's hard to do though, because now I have a little sister. I can't wait til she grows up and can play with me too. I really like her, but sometimes I'm not very nice to her. Most of the time, though, I just want her to sign to me, but she won't do it, so I have to make her. I'm not always gentle enough, mommy and daddy say. I try, though. They just forget I'm 2 sometimes.
When my Nana was here, we all went for a hike. You can see some pictures of it in the picture album. We hiked down to a waterfall and then back up again. It got pretty steep sometimes and I got really tired. I didn't want to walk, but I didn't want to be carried either. Uncle Chewy carried me down in the stroller most of the way. Good thing I'm light. Then everyone took their turn carrying me up. It was very fun. I've never seen anything like it before. God sure made some pretty things.
Well, I should go now. Goodnight everyone.
Love,
Tessa
Thursday, June 2, 2005 4:19 PM CDT
I figure I better update while I have the chance. Tessa is happily coloring with her new markers and Selah FINALLY went to sleep. She slept all morning and then woke up as soon as I put Tessa down for her nap and ate continuously! Needless to say, not much got done during Tessa's naptime. I wanted to write and share with you some of the information on the report that I got from James Madison University. Tessa is involved in a study there to determine what children do with their sign language once they are implanted. At the time, Tessa was 4 months out from her implant. Basically what they do while we are there is videotape her playing. Last time, she played with another little boy who was implanted and they shared M & M's...Dr Seal prompted them her to "give alex the 2 red m & m's." She did most of this correctly (I didn't even know she knew what 2 meant yet). Afterwards, Dr. Seal as well as the graduate students who are conducting the study review the videotape and they sent us a very indepth report of what Tessa was and was not doing at the time. They even reported every sound that they heard her make. It was a very interesting read and definitely makes me want to continue with the study. I really love knowing exactly where Tessa is at.
There were some sections, for example "fluency," where there wasn't any data b/c Tessa isn't there yet. She obviously doesn't speak enough for them to judge her fluency. Here is the summary at the end of the report:
"Impressions: Tessa presents with delayed spoken language acquisition consisten with profound hearing loss. She communicates primarily using sign alone or sign supported by vocalization. Two-sign combinations were observed, indicating age-appropriate acquisition of ASL. She quickly learns and retains new sign vocabulary and is motivated and enthusiastic to communicate. She was observed to share redily and communicate her wants and needs effectively through sign with clinicians and a peer.
Prognosis: Prognosis for improvement of spoken language, both receptive and expressive, is favorable based upon current improvements in using her implant, continued enrollment in her school's early childhood education program, her age, strong family support and involvement and continued adjustment (remappings) of her CI"
She really blew Dr. Seal away when she was able to identify the green skirt and white blouse, etc.
I just wanted to share with you all that we aren't the only ones who think Tessa is doing amazing. I am really glad they sent that report...b/c it only confirms for me that Tessa will be wildly successful with her implant and that we made the right decision.
Sara
Wednesday, April 27, 2005 4:53 PM CDT
Tessa is officially a big sister! Selah Paige Christopher was born on May 8, 2005 (Mother's day!) at 7:53pm. Tessa is loving being a big sister and signs "want hold baby" a lot. She also just tries to pick her up. We'll have to work on that one. :) I will try to update with more soon, but as I'm sure you all know, there's not much time around here to do much. Time to feed the new one. Check out Selah's page at www.caringbridge.org/va/selahpaige/ for the details. I wrote a lot more there.
Sara
Wednesday, April 27, 2005 10:41 AM CDT
Hi everyone,
It's been quite awhile since I've done and update...and I know it's definitely time for one! Things around here have been pretty hectic lately. Stephen's been going in and out of town on one-day notice. Tessa is learning new words everyday and I'm just trying to get through these last few weeks of the pregnancy.
Stephen's company has finally been bought and the deal is a done deal finally. He got a pretty nice bonus that we have used to pay off a bunch of things that we owed. We even paid of our car. That was very exciting! It's a wonderful feeling to be free from some of the debt that we incurred while he was on his paycut. The company that bought metricvision is a much larger company and has many more sales people to help sell the unit that MetricVision sells. So, the hope is that more units will sell now that the company isn't struggling under financial pressure. This would definitely be a blessing. However, if the company still doesn't do so well, then we may need to really consider finding another job. We will just take it as it comes, though, and know that God has his hands in our lives.
I am now 39wks pregnant and ready to be done. We haven't totally settled on a name for Tessa's new baby sister yet, but I have no doubt that she will leave the hospital with a name. I'm anxious to see how Tessa reacts to her baby sister. She does point to my belly and say "baby" but honestly, I can't really expect her to understand the concept that she will have a new baby in her life forever. I know it's probably going to be a rocky start...but I hope in the future, they can be best friends. I never had a sister, so I never knew what it was like to have someone that close to you. For the past 2 wks, my back has been hurting, on and off. Mostly, at nighttime, when I'm in bed, it would hurt pretty bad to roll over. I spoke with the dr. about it on Friday, but she seemed to think it was nothing. So, I left the dr.'s office somewhat peeved that they didn't do anythind for me. It made me feel like a hypochondriac, I guess, b/c I felt she didn't really validate my pain. So, two nights ago, as I was laying down after one of my many middle of the night gallavants to the bathroom, I coughed and felt/heard a popping sound. Then I couldn't move. I guess it was a back spasm...but my back is STILL very sore from it. I can't move around much. We went to the hospital, b/c it hurt so bad, there was no way I was going to make it to a dr.'s appt later in the day. They told me I was having mild contractions and my blood pressure was slightly elevated (probably due to the pain) and sent me home with a prescription for some muscle relaxer. This stuff just knocks me out. Makes it very difficult to be a good mommy. Thankfully, Tessa has school the next three days...and then she comes home and naps. I'm still having a difficult time picking her up or bending over to help her with things. I'm sure it will get better, progressively, though.
Now on to the girl you've all been waiting to hear about. Tessa is doing marvelous! She is trying SO many words, I can't even tell you. Sometimes they don't sound like anything...but other times they sound exactly like they are supposed to. She loves to say "Cat" (Caaa) and "Cow" (Cowwmmmm), "Dog" (wuh wuh) and maybe other words. She says "Yellow" and flicks her tongue in and out of her mouth, so it comes out like "lalaaow". She does teh same thing with "I LOve You." It comes out "lalalaalal." It blows my mind how much she understand and comprehends. She is truly an amazing child...smarter than many people have seen. Even Arlene, whose worked with tons of preschool Hearing Impaired children, notes that Tessa is a cut above the rest. She amazes people everytime she sees them and keeps them captivated with her signing ability. Tessa signs all kinds of things now. She is finally able to answer yes or no questions, which took a little bit of work to teach her...but now we can ask her "Do you want peanut butter" and she will sign "yes" or "no." If we tell her to "come here" she turns around with an emphatic "no!" She makes people laugh when she signs something and we have no idea what she signing...and then she nods her head and signs "yes" with this sweet little smile. She definitely picked up daddy's sweet tooth. Many times at dinner she says "Cake?" and we say "No" and then she says "Candy?" and we say "no" and she says "Cookie?" and of course we say "no." Then she'll say "cheese?" Cheese is definitely a favorite around here. SHe does try to say "cheese" but it comes out more like "shees" But, the fact that she can get the sh and s sounds and put them in the right spot really amazes her therapists. Usually that's one of the last mastered sounds. We can't get her to say "Ooo" yet. She would rather have her mouth closed and say "mmmm."
I have to say, I'm very excited to see everyone's reactions to Tessa after the baby comes. I'm looking forward to see how the grandma's react to how much Tessa is attempting to talk.
Well, I better going here...suppose I should lay back down again before Tessa gets home. She is riding the bus now and is SO excited about it (but I'm not!). All this weekend , she woke up and the first thing she signed is "Tessa Bus" and she's get stomping mad when we told her that today isn't a day that she rides the bus. This happened at least once a day the entire weekend and Monday and Tuesday. Guess she likes riding the bus.
Love,
Sara
Tuesday, March 15, 2005 9:04 AM CST
Figured I would update you all on Tessa, since we lost her headpiece on Friday. Yesterday morning (Monday), I called Johns Hopkins and asked them if they had a loaner headpiece we could borrow for her therapy session that day. They did, so we drove up there and got a loaner headpiece (Tessa is using that one right now). I have also ordered a new headpiece and cables.
When we were in the waiting area, I put it on Tessa. I wasn't sure how she would react because she hadn't heard for almost 3 days. At first, she looked as if she would cry, but that only lasted a few seconds and she happily went back to coloring. There were two other children there: Harry and Sophia. I believe Harry is slightly older than Tessa and Sophia is slightly younger. They have both been implanted for over a year. Harry's father told me that they have had equipment problems. Harry and Sophia were fighting over a train when I put the headpiece on Tessa, so she may have just been overwhelmed by the screaming.
Anyhow, Tessa's therapist wasn't sure how she would do during therapy because she had been without hearing for a few days. Tessa, though, proved to her that she had not forgotten anything. She did amazing! She said "beep beep" as clear as day. She also tried to imitate many of the instructions the therapist was giving her. She is understanding action words such as open, close, put it on, listen, etc. She understands me when I tell her to get her shoes and socks and coat. Her therapist said she is doing absolutely amazing and that she considers Tessa one of her highest functioning kids. This blew my mind, as Tessa has only been in therapy for a little over a month. It seems from what the therapist says, that she is going to continue to progress at this rate. If she does, she could very well be in a typically developing preschool next year. I spoke with the therapist about that. I don't necessarily want to take her out of her preschool that she is in now, but the therapist mentioned that "may" be a better option...depending on how much she sees Tessa relying on the sign language that she is given at school. Tessa feels VERY comfortable with sign language...and for her to learn to speak to the best of her ability, she may need to be taken out of that environment, where she can totally rely on sign. However, this does not mean that we will not sign with her. We have every intention of teaching her sign language and allowing her to be bilingual. I do not want her to be one of those deaf children who says "I wish my parents learned sign language for me." There are plenty of those kids out there...believe me.
Right now, she is in her prime language development time...and she needs to be exposed to oral language as much as possible. During the therapy sessions, she does much better when the therapist only speaks with her (no sign). By better, I mean, she vocalizes much more and imitates the sounds that therapist is making. This is the goal, at this point. Soon, she will be able to say words...and communicate orally. As she gets older, we hope to continue teaching her sign language.
It was nice to hear so many wonderful things about Tessa. I always love it when others tell me how smart she is and how great she is doing. One of our friends at church said that she has never heard so much coming out of Tessa's mouth...and some of what is coming out are true words. She actually said this when Tessa didn't have her CI over the weekend. It surprised me...but on the other hand, Tessa did not stop vocalizing just b/c she couldn't hear. She still said most of her words. In fact, she wanted to play the Listening Game. This is the game the audiologists play with her to see how well she is hearing. She holds a toy up to her ear and when she hears the sound, she puts it in a bucket or does whatever function the toy has. She loves playing it and we play it home a lot. It helps us to know that her CI is working properly as well. She can even hearing the "Shhhh" sound whispered.
So...we are back to our normal routine. Tessa and I are going to a playgroup birthday party this afternoon, so we need to get ready for that.
Thanks for checking in.
Love,
Sara
Saturday, March 12, 2005 8:50 AM CST
Hi everyone,
Unfortunately, I have some bad news to report today. We are missing the magnet that goes with Tessa's CI. Yesterday, I picked her up from school and we went to the thrift store to drop off some stuff. She took the magnet (the little round piece) apart from the wire while we were driving. She does this sometimes, so I wasn't concerned. This time, however, she threw the magnet (which she doesn't normally do). I asked her where it was and she pointed to the floor. It was laying on the floor and I made her go get it (since I couldn't reach it). She gave it to me and we put it back together and we were on our way.
After the thrift store, we went to Big Lots to see if they happened to have any double strollers. No luck. We left the store and I got our purchases and Tessa out of the cart. As I was getting everything out of the cart, Tessa was "talking" to some people sitting on a bench. She loves to say hi and bye bye to people. It was sprinkling a little bit, so I hurried her across the street and we got to the van. We were parked in the very front of the parking lot, so the side of the van that we normally get it was facing the store. I was trying to keep Tessa out of the street while I loaded the van, so I was keeping her in between me and the van. She was trying to look around me and say bye bye to the people on the bench. I put her in and we got going. Then as soon as I pulled out of the parking lot, I noticed that she had taken the magnet apart from the wire again. I pulled off the road and went to get it away from her, but couldn't find the magnet anywhere. I have no idea where it could be at. My guess would be most likely the van, however, we have torn the van apart looking for the thing and haven't found it anywhere. We even took the seats out of the van. I've unlatched Tessa's carseat 3 times already to look for it. We checked under and unlatched the actual bucket seats to see if it attached itself to some of the metal there, but to no avail. It's been a frustrating ordeal, made worse by the fact that now Tessa can't hear.
So...looks like we're going to be ordering another headpiece/magnet for Tessa in the very near future. I really wish that we could find it...however, it doesn't seem like that's going to happen. I notified the store, though I seem to remember her having it on as we were leaving the store. They haven't found it. I went back and looked myself.
I called Advanced Bionics (the maker of her implant) and they told me the price of the magnet/headpiece. It is pretty expensive for such a little thing, but I guess it's a small price to pay for her to be able to hear. I will definitely keep you all updated on the situation. I'd be very glad if we found it this morning, but I don't think that's going to happen. I honestly, don't know where else to look. It seems like it definitely should be in the van, unless it attached itself the van while I was trying to corral her as she was saying bye bye to the people on the bench. If that's what happened, I suppose it's long gone. So, it would be wonderful if you would all pray that we find this little thing. It's such a little piece, but intrical to the functioning of her implant.
This morning, she found her processor and asked for her "CI." :( The good news is that she is still vocalizing...so we're going to try to get it ASAP so that we don't lose any time in her language development.
Also, she has been doing really well. She is attempting to say things all the time now, though they still sound nothing like what they are supposed to. A couple of days ago, she said "Please help up" when she wanted me to help her get on a chair. She routinely comes to us and asks for "hep" (help). She is still relying a lot on sign, which is okay for now. Her therapist did say that we may need to take some of that away from her. During her therapy session this week, she signed/spoke simultaneously for the first half of the session and then only spoke during the second half. She got much better verbal responses during the second half of the session, so she did say that we may need to concentrate on speaking mostly right now...b/c she does awesome when she is trying to speak...but for now, signing is a lot easier for her. It will come to a point where she realizes that speaking is easier and will just gradually transition.
Well, I better get going. I need to search the van one more time before ordering a new headpiece. Hope all is well with you all.
Love,
Sara
Wednesday, March 2, 2005 1:59 PM CST
Hi everyone! Thought you all might enjoy an update, since I haven't updated in a few weeks. Tessa is doing awesome! She is attempting quite a few words now, though they still sound nothing like they are supposed to. My favorite is "Please." She says "peeeez." It's SO cute and it makes me want to give her whatever she is asking for...even if it is more candy. :) She is also able to identify quite a few things now, without sign, most of them being animals. She can point out a pig, cow, cat, dog, horse, bird, and rabbit without signs. Also, she can point out cookies. I never worked with her on that one....wonder where she learned it from. Guess you see a theme here? She definitely has a sweet tooth...just like her daddy. I think she understands shoes, but I'm not positive yet. She probably understands a lot more than she lets on.
It's been wonderful to hear her vocalizing SO much lately. She is trying out different sounds. She is consistently saying "bye bye" and "up." We are trying to teach her how to shape her mouth to make various sounds, like "oooo" but she doesn't quite "get it" yet. She will, though. We are dealing with some behavioral issues, still, but I think that's normal for a 2 year old. She is not sleeping well for her naps. She's been upstairs in her bed for over an hour and is still not asleep, yet I know she is tired, b/c she laid on me for a half hour before that watching Blues Clues. She needs a nap today, b/c it's wednesday and we are out late on Wednesday nights for our group. Unfortunately, there is no reasoning with a 2 year old. She didn't sleep well last night either. She woke up twice crying hysterically. I wonder if she had a bad dream.
It's amazing how as a mother, I can love her more everyday. While I do crave time away from her (when she's at school or napping), by the time she's done with those activities, I'm missing her and really looking forward to seeing her. She amazes me with her ability to overcome the obstacles that she's had in her path. She is incredibly smart, and yet very laid back. She does have her 2 year old moments, where she jumps up and down screaming b/c she wants something. Someday, she'll figure it out that those actions don't work. 3 weeks ago, I would have said "I'm SO frustrated with her...she never listens." I was having a rough couple of weeks, but now, it seems like things have simmered down for her....she has been much less angry about things that don't go her way. She is even more able to communicate with us the things that she needs and wants. She is understanding now that she has to stay in her bed at naptime. She's still in her bed, after being up there for an hour.
Well, I think I'm going to go rescue her from the bed, since she doesn't seem to be sleeping. I want her to know that she was a very good girl for staying in her bed. Hope you all have had a good beginning of March....we're looking forward to spring here!
Sara
Thursday, February 10, 2005 4:18 PM CST
Hi everyone,
Busy week around here! Tessa and I are still fighting the naptime battle. I set up her pack-n-play and she is sleeping in it right now. I wish she would learn that she has to sleep in her bed, but I guess she will eventually. On Monday, Tessa and I drove the Johns Hopkins for her first therapy appointment. The therapist was quite impressed with her progress so far and said she does not expect that Tessa will need more than one year of the weekly therapy. They have certain goals they want them to attain by the end of their first year. Tessa is already halfway down one of the lists and has made significant progress in the other lists as well. She wants us to work more with Tessa on vocalization. She is doing really well at listening. Now it's time to get her to return what she is hearing. She will vocalize if we ask her to, but does not try to say words unless we prompt her. In the therapy session, they worked on the length of words. For example, they played a game where the therapist said "up up up" and "dooown." Tessa actually said "up up up" though sometimes it came out with the "p" sound in the front. She wasn't interested in saying "down."
Tuesday, we took a drive to Harrisonburg to visit JMU. Tessa is involved in a study there to determine what children do with their signs after they are implanted. Some kids drop signing. Some kids continue to sign and learn to speak. Some kids never really learn to speak. Our hope is that Tessa will be in the second category, but it's really up to her what she does. They also tested her hearing. She worked with some grad students who were doing various projects. One of them was studying whether a hearing aid in the opposite ear helps kids localize (find out where the sound is coming from). However, Tessa got pretty antsy by the time she was able to put the hearing aid in Tessa's ear, so that didn't work this time. Other than the testing, they videotaped Tessa. The goal is to videotape her every month or so to see how her signs and speech are evolving. We had a good time there, though the drive wasn't too fun.
Finally, wanted to tell everyone about something new that Tessa did yesterday. I spoke to her and asked her what her name was (with no sign). She looked at me and signed "name." She understood that I just said "name."
Well, she just woke up from her nap, so I've got to run. Hope you all are having an amazing week.
Sara
Friday, February 4, 2005 12:25 AM CST
Hello again...
There seems to be lots to share today, but I'll probably get done and it'll be my shortest journal entry ever! Anyhow...just wanted to let everyone know that Tessa heard the phone last night. Not only did she hear the phone, she acknowledged before she saw me pick it up that indeed, it was the phone. My mom called and Tessa signed phone before I even picked up the phone. This is amazing for her. It means that not only is she hearing the sounds (which we knew already), but she is giving them meaning. She knows that sounds have a purpose and that each sound represents something. I can't even tell you all how awesome that is for us! I almost cried when I answered the phone. My mom must have thought I was a little crazy, because I'm sure I sounded quite jovial.
And now for some news on the homefront (b/c I rarely update on anything other than Tessa). Stephen's work is somewhat unstable right now. It's not unstable in terms of losing his job....he's just not sure where the company is going. So, there is the possibility in the coming year, he will be looking for a new job. This is a mixed blessing for us. If he does look for a different job, he will probably look in Georgia or South Carolina (within 3 or 4 hours of my parents). If we move down there, we will be closer to my parents...which will make it more feasible to see his parents more often as well. That is something that we want for our children...the opportunity to see and to get to know their grandparents. That is something neither of us had as children. It was always a long hike to see grandparents. The problem Georgia poses is their school system. From everything I've heard, the school system isn't the greatest. However, I believe there are pockets where the schools are decent and we will need to search those out. We always have the opportunity to homeschool, which is something that we've always intended on to some degree anyways. The problem with homeschooling Tessa is that she will likely not get any services from the county we are in if we choose to homeschool. That means paying for speech therapy and all kinds of other services out of pocket. On the other hand, we will know she is getting what she needs if we homeschool. That is quite a ways down the road, however, it is something we are trying to think about right now.
Tessa is officially in her big bed. My parents brought up my old bed from childhood a week ago. We set it up and Tessa napped in it last Friday. She's been sleeping in it ever since. I'm very proud of her. She has done amazing! The bed is pretty high. We bought some bedrails to put along the sides of it. It's about hip high on me, so I was fearful of her falling out. We put a chair at the foot of the bed for her to get out. Unfortunately, I showed her how to do this (thinking she needed to know). Monday and Tuesday made for very rough days, because Tessa decided it was fun to get out of bed and play when she should have been napping. Monday, I just let her play in her room, because the day had already been a rough one (she was very clingy and fussy all morning) and I didn't want to fight with her. Tuesday, though, we got down to business, and I put her right back in every time she got out. Wednesday and Thursday she has stayed in at naptime and right now she is in bed for her nap as well. I'm SO glad that she learned so quickly. We haven't had a problem with her staying in bed at night yet. We have some pictures of her in her big bed, however, we cannot find the cable to connect the camera to the computer at the moment. I will get those up as soon as we find it (I know it's around here somewhere).
The new one is doing well. She still doesn't have a name, but that's okay. The nursery is all set up (furniture wise at least) and there's really not much left to do. We have everything from Tessa. There are only a few select things I want to get for this one. I'm hoping to buy a sling, double stroller, and some cloth diapers. We are going to use cloth with this baby, so I've got to go online and figure out which ones I like best. You wouldn't believe how many brands there are now (and types). It's not just the cloth diapers with pins and covers anymore.
On a final note, Tessa's therapy at Johns Hopkins is scheduled. She is starting this Monday! Wow...that was fast! I was anticipating a long wait, but they called at the beginning of the week and were able to schedule it for Monday's at 11am. I'm excited to see how well Tessa is doing in the therapist's eyes. I'm also very excited for her to be getting the things she needs! She really seems to be doing well.
Well, off to do some laundry. Thanks for checking in on us! I promise I'll get some new pictures up when we find the cord for the camera!
Sara
Sunday, January 30, 2005 6:37 PM CST
Just wanted to pop in and tell you all how wonderfully Tessa is doing. She is really attempting to say various words, though many of them sound the same. For example, when she sees a rabbit, she says "babbi" (sounds almost like babbit without the "t"). Most of them sound nothing like the word she is attempting, but I have to say it amazes me that she is even attempting words so soon after her implant. She knows to respond to her name, though she doesn't usually. She also doesn't seem fazed by loud noises, which is a blessing, as many children with CI's freak out at certain noises. She continually amazes us with her progress, though it's definitely still a very long road.
I'm not sure if I ever mentioned on here, but Tessa knows her letters (in sign language). If you hold up a letter, she will tell you which one it is. Also, she is learning her alphabet. Generally she can tell us which letter follows a certain letter. She knows words that start with letter (well, at least she associates the word and the letter). She is becoming ever more independent and is testing the limits in quite a few areas, but that's typical. For example, her teacher told me that at school the other day she was pulling a little boy's hair and he was whimpering, but not screaming or crying. She continued to pull harder and the teacher saw what was going on. She managed to get Tessa away from the boy and told her "no, not nice." Then she asked the little boy (who is 3 or 4) why he didn't tell her "stop." He replied "I can't tell her to stop, she's just a baby." oh my! What are we in for?!? I have no doubt she'll learn to use that one against the system. She has been quite hyper lately and enjoys playing the "I can get my CI off....are you going to put it back on?" game. She thinks it's quite amusing and it's a little difficult to know how to discipline her for this type of action.
Her signing skills are still improving at a fast pace. She is able to tell us what she wants quite easily now. Today, after her bath, I was putting a diaper on her and when I was finished she said "want to stand up." She is also amusing at the dinner table, though it does get a little frustrating as well. If we are eating something that you would put sauce on (ketchup, barbecue, mustard, etc), she wants some sauce, however, she will not eat it. She gets quite a kick out of dipping every single french fry in ketchup and then trying to get us to eat them. She sits at the table and says "want sauce" or "want ketchup." With ketchup, we know she despises it and will not eat it, so she doesn't get it, however, we are attempting to let her try other types of sauces. Once she enjoyed dipping her peas in mayonaise (and actually eating them as well). With ketchup, though she will say "want ketchup" and then proceed it with "don't like." We always tell her "no ketchup, you don't like it," but she still thinks it's fun to dip everything in it and then refuse to eat it. Crazy girl! She also seems to have an affinity for pepper. If we put pepper on it, she'll eat it (or at least try it). I'm glad that pepper works...I've heard that you can put sprinkles on food and most kids will eat whatever you put sprinkles on. Guess pepper here is the equivalent to sprinkles.
Well, that's it for today. Just wanted to let you all know that we are doing great here. Tessa got to play a little bit in the snow today, so when I get the pictures on the computer, I will try to post them. She wasn't sure what to think of it. She took itty bitty baby steps through the snow.
Sara
Thursday, January 20, 2005
We are back from our second mapping session (where they program Tessa's implant with different maps/programs). It was quite a trip. We drove up yesterday (on Wednesday). I thought we would leave early to get to the Children's House and allow Tessa some time to enjoy the house. It has all kinds of toys, a large screen tv, and they often do dinners for the families staying there. It's a very nice place and we certainly are thankful for the opportunity to stay there at a rate much lower than a hotel. Mom and I left at 11:45 am to return some library books and then make our way to pick up Tessa. It snowed about an inch while Tessa was at school. The roads were terrible, but we made it to the library and then started out to pick her up. I thought "We'll go down rt 1, since it is a highly traveled road...it should be decently cleared by now." Boy was that the wrong decision!! We did not make it to pick Tessa up until 1:30. It was not a fun drive. Unfortunately, it must have been foreshadowing for the rest of our day!
We left from Tessa's school, intending to drive straight to Johns Hopkins. Traffic was okay on the highway, until we got close to D.C. What is normally a 2 hour trip, ended up taking 5 and a half hours. My mom was with me, so that made things more bearable. Tessa did wonderfully, as always, though we were all quite impatient by the time we arrived at 7:30pm. We had originally intended to be there by 4. So...guess the plans were changed a little by the weather. I am thankful, though, that we made it one piece.
She had her second mapping this morning. The past 2 days, we went through 3 different maps (programs), each one with a higher volume level than before. Today, they made 3 new maps and tweeked them a little more than the original ones. I was concerned that Tessa would not like the volume increase, but she did wonderfully with it. She is not crying when we put the implant on anymore, though she does think it is amusing to knock it off and see if mommy will put it back on. Therefore, wearing it in the stroller or carseat doesn't exactly work well. That's okay, though. We'll get there. The hope is that she will get so used to it that she will notice when it's off and try to put it back on. She is already noticing when it has fallen off. She looks around looking for it (most likely b/c she wants to play with it!). At the appointment this morning, they tested what they call the "ling" sounds. There at 6 of these sounds and they use them to determine what frequencies of speech a child is hearing at each decibel range. They determined that Tessa is hearing all of the ling sounds right now at a moderate speech level. To do this, they do something called "play audiometry." Tessa will learn a lot about this in the future. Basically, they play a game with her. She takes a block and holds it by her ear. When she hears the sound, she is supposed to put it in the bucket. Tessa did wonderfully with this game today! She is even hearing the "ssss" sound (which is very high frequency and difficult to hear). Our trip home from the appointment was much better than the trip up. We made it home in exactly 2 hours.
The most exciting thing that I have to tell is that Tessa is "trying" to say her name. If I ask her what her name is (with sign) she will get up real close to my face, open her mouth wide, and say "ga ka." I realize that this doesn't sound anything like "tessa," but she is definitely trying. I definitely didn't expect her to be trying that SO soon. Tonight, I asked her (in speech) what her name was and she pointed to Stephen, signed "name daddy." She didn't say her name, but she knew I was talking about name and I didn't sign. I suppose I could be reading into things, but it definitely feels like a good sign.
The pictures on the front page shows Tessa's implant (how it will look during everyday wear). It can be covered up by her hair. The little purple pouch on her waistband holds the processor and a wire runs up to the magnet part on her head.
Well, I need to get some sleep. It's been a very tiring few days. Tessa took a 4 hour nap today, so she is very tired as well! Thanks for checking in on us. I hope to give some more updates soon. Here is a link to a page Stephen has designed that has a video of Tessa's activation on it.
http://homepage.mac.com/ransomedhome/Menu1.html
You may have to cut and paste. For some reason, the hyperlink isn't showing up. I have also tried to put it in the links section to no avail.
Sara
Tuesday, January 18, 2005 8:42 PM CST
Don't have much time tonight, and we are exhausted from our long day...but I just wanted to let everyone know that Tessa's implant was activated today. She is doing well, though a little moody. It's been a long day for everyone...starting with Tessa waking up at 5:30am and not going back to sleep. I will try to update more in the next few days. Tomorrow we go back to Johns Hopkins for her appt on Thursday morning. Then we should be home and back for a decent amount of time and I will try to update then. But, the good news is...Tessa can hear now...and we can see reactions. Her little eyes flutter and blink when she hears a loud sound. Time for bed here...love you all!
Sara
Tuesday, January 4, 2005 3:41 PM CST
Just thought I'd pop on here and tell everything that Tessa is back to her normal self. I've been meaning to do this for awhile, but there's not much else to update right now, other than her spunky little 2 year old self is back to normal.
She is still signing like crazy and learning new signs everyday. She sometimes signs things we have no clue about! She can be very adamant about it and we just have a puzzled look because we don't have a clue what she is signing. School is going well. She just went back on Monday.
We are considering starting to try to potty train her, before the baby arrives in May. We're not exactly sure where to start though. I'm kind of hoping that she just picks it up pretty quickly. That would be VERY nice. However, I wouldn't be surprised if that's not the case.
She has her next appointment on January 18th. That is when her implant will be "activated," meaning that they will hook it up to the computer and program it so that she can hear with it. Right now, she can't hear with it at all. They wait for it to heal completely and then turn everything on. It should be an interesting day. We do not know how she will react. She might freak out. She might get excited. She might not react at all. We'll see when we get there. We are trying not to get our hopes up, but I admit that it's hard not to. Obviously, we hope that things go very well for her and that she is able to hear and speak with the implant. I've noticed that lately, she seems to be "trying" to talk. Many times, she wants to tell me something and she just makes this "mmmm" sound continuously in a very insistent voice. She really wants to talk...she just can't hear the sounds to mimic. Hopefully, she won't be past that stage by the time she figures out what is going on with the implant.
So, we are in the waiting phase right now. We had a good holiday in Florida with Stephen family. They really enjoyed Tessa's company and had a good time interacting with her. She even got to go swimming in the middle of december (though I admit that it was cold...and she thought it was cold as well). She had a good time seeing Grandma, Grandpa, Uncle Chewy and Aunt Sharon. By the way, she is really into names right now, so she had learn all their sign names almost as soon as she saw them. She points to each person with this look on her face, asking their name. It's very cute.
I will sign off on that note. Hope everyone had a safe and happy holiday. I will update again soon.
Love,
Sara
Thursday, December 16, 2004 3:34 PM CST
Well, we are home from a long day at Johns Hopkins. Tessa got her implant today. Did I mention it was a long day?
Yesterday, Grandma Vaughn arrived at about 2:30 and we immediately got in the car the pick up daddy at work. From there, we drove through rush hour traffic to Baltimore. We stayed at a hotel in downtown, close to the Inner Harbor. There evidently is lots to do at the Inner Harbor, but not many places to eat. Well, not many places to eat when it's frigid outside and you just want to get some hot food. We walked 4 city blocks from the hotel and found a small italian restaurant that filled our bellies, though. Did I mention it was cold? Tessa was all bundled up in her poofy coat along with her mittens and hat. She looked SO cute. Email me if you want pictures.
We got back to the hotel at about 8:30 and promptly went to bed. Tessa tried to sleep with grandma, but mommy was too afraid she'd fall out of bed and they'd cancel her surgery, so she went into the crib where she slept decently. We all got up at 5:30 am and drove to Johns Hopkins. We got there early and Tessa played "Hide the Elephant" with Grandma for awhile. She was very tired and thirsty, but overall in an okay mood. However, the first thing she signed when she woke up was "drink" which broke our hearts, because she wasn't allowed to drink or eat anything. At Johns Hopkins, they took mommy, daddy, and Tessa back to the pre-op area, while grandma waited in the waiting room. Tessa got to play in the little house and enjoyed throwing the books out the window of the house. The picture of mommy and Tessa is from this area. We talked to the dr.'s and they assured us that all would be well. Dr. Niparko is one of the leading cochlear implant surgeons in the country, and they assured us that we were in good hands. Along with Dr. Niparko, two other doctors were assisting in the surgery. Daddy got to go back with Tessa while they put her to sleep. He said she didn't like the mask, but did well overall.
While she was in surgery, we went with Uncle John and grandma to get something to eat in the cafeteria. Uncle John arrived while we were in pre-op with Tessa. We ate breakfast and chatted about Germany. Surprisingly, we weren't too nervous. Then we filled the prescriptions we were given for Tessa. As we were walking back to the waiting area, we were buzzed (they gave us a small pager) to let us know they were almost done with surgery. Dr. Niparko informed us that all went well. She did not have the cerebral spinal fluid gush that they thought she might. It wouldn't have been a problem anyways, but just makes things a little more difficult for the surgeons.
We were able to go back to find Tessa VERY unhappy with her new situation. She was VERY fussy and was not going to have anything to do with anyone. She kicked her blanket off, pushed her elephant away and even said a vigorous no for juice and cookies. She was not happy. You can see in some of the pictures her unhappiness. Soon after her protests, she fell asleep again. We were informed that she woke up too soon and that they would have put her back to sleep, but she had gotten her IV out. It makes it difficult for them when they wake up too soon and they are very incoherent. This cycle went on for a couple hours...she fell asleep and woke up and fell asleep and woke up. Mostly, her waking moments were filled with fussing. She was super sensitive to anything touching her.
Our nurse was a little bothersome. She wanted us to leave, we think, so she could eat lunch. We were told that Tessa couldn't leave without drinking something first. That way, they could give her the pain medicine that she needed without fear that she'd throw it up. Tessa would not have anything to do with drinking, though. We told her that we weren't comfortable leaving without her drinking something first. I don't think she was too happy about that. Dr. Niparko stopped by again to see how we were doing and he assured us that it would be okay if we left without her drinking. Tessa was given some different pain medication through her nose. Then we gathered up our stuff and left.
She fussed on the way home some. It is somewhat obvious when she is in pain. She pulls at the large bandage on her ear. After hearing the nurse saying that she was not crying out of pain, Dr. Niparko informed us (when he last talked to us) that most likely it was due to pain. Needless to say, we weren't too thrilled with the nurse, as I said before. On the way home, we had to pull over to give her some of the prescription medicine for pain because she was crying pretty hysterically and pulling at her bandage. We are home now, and she is sleeping...probably due to the medication. We need to keep her bandage on for 2 days.
He okayed us to travel after the weekend and said she should be back to normal very soon. We are looking forward to that time, because as you all know, it's hard to see your child in pain. I have no doubt that it will be gone soon and she will be no worse for the wear.
Well, I need to sign off here, so I can get a much needed nap. Thanks for checking on Tessa's update. I will definitely update when she is feeling better. Thanks for being such wonderful friends and family!
Love,
Stephen, Sara, & Tessa
P.S. Sorry for the grammatical changes in person. I'm a little tired too. ;)
Friday, December 10, 2004 9:27 AM CST
It's official...Tessa has lost some of her hearing in her left ear. We did not test her right ear. Yesterday, we went to Hopkins for a study that we're going to be involved in. I asked if they would test her hearing real quick if they had the time. They had enough time to test her left ear.
Before, in her left ear, without her aid, Tessa could hear sounds at 70dB. Now, she hears low frequency sounds at 90dB and as the frequency gets higher, the hearing gets worse. We're pretty sad about this. What saddens me the most is that the progress that she was making before just halted. She was doing amazingly about 3 weeks ago and then "bam" it's just gone. She still says the words she said before, but has not progressed into anything else. I'm not sure if this was caused by her hitting her head at some point. With LVAS, the slightest bump to the head can cause hearing loss or even just a fall on her bottom. Basically, anything that causes a pressure change in the head causes hearing loss. I guess I'm pretty discouraged about it today. I was okay with it yesterday, but last night and this morning, I've been pretty upset about it. It also makes me that much more thankful that we are going ahead with this cochlear implant, which by the way, is NEXT WEEK! Guess I just wish she didn't have to deal with any of this...but that's life and God made her with this condition for a reason. Of all the people that could have it, I really think that Tessa's personality and demeanor make it less of a bad thing for her. She deals with this stuff really well, and while she doesn't understand it yet, I think she will just be able to go with the flow as she gets older.
So...that's the news from yesterday. Also, I meant to mention this in my last post, but Tessa will be having a baby SISTER. We are open for name suggestions.
Hope your holidays are going well...I'm off to the grocery store now.
Love,
Sara
Tuesday, December 7, 2004 5:14 PM CST
Hello everyone,
Long time, no update! I get so frustrated with myself when this happens! ahh.
Tessa is playing with play-doh, which she loves, so I figured I'd take a quick minute to update. Tessa's surgery is still on track for the 16th. Woohoo! I'm SO excited! I'm nervous, of course, too. However, I was sick this weekend with a fever, so we are really hoping that she doesn't get sick. Please pray that she doesn't. It would be so hard for us to have to wait another month or so. :(
I spoke with her teacher today. She has noticed some of the things we noticed. Tessa hasn't been responding to sound like she was before. I'm hoping to be able to get her hearing tested again. She stopped responding to claps about a month or so ago. She also does not respond to her name or other vocal cues. I'm not sure if it's just two year old behavior or if it's really that she's lost some more hearing. I tend to lean more towards hearing because it was pretty abrupt. She doesn't even show any flinch and then pretend to ignore the sound. I hope that she hasn't lost more, but we both tend to lean towards that. Stephen has noticed the same thing at home with her as well. It is hard because she was progressing so well and even saying some words, which she still says. She was attempting new words, but hasn't been attempting any new words the past few weeks. We did lose her hearing aid for a week or so over thanksgiving, but it was found and at first I was just chalking her non-responses up to that, but I would have expected her to be used to her aid again. I have gotten in touch with Johns Hopkins to see if they can test her when we go up there on the 9th (this thursday).
Just wanted to update you all on that...I've got to run though...and clean up and make dinner! Hope you all are having a wonderful holiday season!!
Love,
Sara
Thursday, November 11, 2004 3:14 PM CST
We have a date for surgery! 12/16...at 9am! It doesn't seem too far away, that's for sure...because I think back to 10/15 and that was Stephen's birthday, at that wasn't that long ago! I'm glad this is finally happening, though as a mother, it makes me a little nervous. I know it's really going to work wonders for her!
Last week, Tessa and I went to Johns Hopkins for her final appt before they would schedule the surgery. This was an auditory skills evaluation. The teacher, Deborah, was impressed, once again, with Tessa's abilities. She was amazed at how focused Tessa is. The fact that a 2 year old can focus on one activity for over an hour is just amazing, I guess. Maybe we'll see when this next one turns 2! ;) Tessa is so engrossing in trying to figure the sounds out. You can just see it in her face and she tries very hard! All of the sounds that Deborah made, Tessa made an attempt to imitate. She said "mmmm" for "moo." She tried to imitate all the other sounds. At first, I was concerned that this would make them call off the surgery. When I asked, though, she said, "no...on the contrary...it means that Tessa will probably progress extremely quickly." It's a good thing because Tessa understands that sound means something. She understands that different sounds represent different objects or actions. The problem is that she can't hear all of the sounds in most words, so she will never be able to say them properly or even understand some of them. So, once again, we've got good news.
Because we have a date now, I'm thinking that I will have the extra special birthday gift of Tessa hearing and possibly speaking on my birthday (at the end of January). She will most likely be activated in the middle of January. I was hoping to have her activated before Christmas, but I know that will not happen and was not expecting it at all. As a mother, I wanted her to be able to experience those sounds of the Christmas season...singing, bells, music, ornaments clanking, paper ripping, and all the other various sounds of the season. However, maybe now I need to look at it in another light. Tessa will be getting a new start next year. In a way, she will be starting over. Things will sound different to her with her implant. We are hoping and praying that she will learn to use it to the best of her ability. I know she will amaze me...as she does all the time.
Well, that is our update. We are getting involved in a variety of studies...one through Johns Hopkins and another through an independent dr in our area who is trying to study what children do with their signs after their implant. We hope Tessa continues to sign. I believe her intellectual ability will allow her to be bilingual (signing and speaking) relatively easily. We will strive very hard to keep her signing, because we do think it is something that is important for her to understand. There will be times when she can't wear her processor (bath and swimming and sleep). We want to be able to communicate with her during those times. Also, we want her to communicate with those that are like her...those that are deaf. She will never be a normal hearing person. This implant will help her to function better in a society full of hearing people, but she will always be deaf...and will always depend on her implant to help her hear. That is most certainly okay with us. She is our daughter. God made her that way for a reason.
Sara
Saturday, October 30, 2004 3:09 PM CDT
It's fall here in Virginia. The weather is gorgeous and we are just loving it.
We have been to two different pumpkin patches this past week. The first one we went to was with Tessa's playgroup. The picture on the front page and the last picture in the picture section are from this outing. She LOVED the animals. They had goats and llamas. I thought that goat was going to jump over the fence on top of her. The kids really loved feeding the animals the bread that someone brought. Tessa did awesome. We got to go on a hayride and then pick out our pumpkin. The pickin's were pretty slim, but we found one eventually. The second pumpkin patch we went to was on Thursday with a little 20 month old named Savon. He works with Tessa's old teacher, Arlene. He has a mild to moderate hearing loss and is just starting to sign. His family was very friendly and Savon and Tessa had a great time together. They chased each other around and played on the old rickety bus (that scared the begeebers out of me. It was SO old!). At the end, Savon didn't want us to leave. He was trying to chase us to the van and Tessa wasn't too happy about it either. Before that, Savon gave her a great big hug and almost knocked her over. It was too cute! We hope to get together with them again some day. The second picture in the album is of Tessa and Savon playing on the bus. The first picture is Tessa and daddy playing guitar. She is fascinated by it and wants to be near it all the time when it is out. Of course, this makes it hard for Stephen to practice. She even dropped a pick inside the hole. Crazy girl! We have a picture of her looking into the hole to find the pick.
Since I've been here last, Tessa has not had any more appointments. We have been to Johns Hopkins for a "device discussion." There are 3 different brands of cochlear implant. They all give the same results, but have different features on the outside components. Before I run down the 3 different brands, let me briefly (I'll try) to explain how the cochlear implant works. There is a part in the inner ear called a cochlea. Those who can't hear generally have something wrong with their cochlea, whether it be malformed, non-existent, or something. If the cochlea isn't the problem, usually the hearing loss is called conductive. If the cochlea is the problem, it is Sensori-neural hearing loss. Inside the cochlea (which is shaped like a snail), there are millions of tiny nerve cells that look like tiny hairs. These are called appropriately "hair cells." I believe some scientists are actually working on hair cell regeneration (and no, this isn't for bald people). Some day, that may be an option for Tessa. However, right now, her best option is this implant.
This is how the implant works. There is a piece that is implanted next to her skull behind her ear. This is the part with the magnet it in it. From that piece, there is a long thin electrode that they put inside the cochlea. When a sound is made, the sound will travel down this electrode and stimilate Tessa's damaged hair cells. Those are the internal components (the magnet and the electrode). There is another magnet that attaches to the internal magnet. The signals transmit across these magnets. The second magnet sits on the outside of her head. From this magnet, a wire runs to something called a speech processor. This is a small computer that processes the sounds that come into the microphone. From the speech processor (there are body worn ones and behind the ear ones that are similar to Tessa's hearing aid), a wire runs to a microphone that usually sits on the ear. So, the sound travels into the microphone to the speech processor to the transmitter, across the skin and down the electrode. I know it's kind of complicated and it is a bit hard to explain.
Now for the 3 different types of implants:
Med-El--Made in Austria. This is the newest one to come to the US. It does not include a body worn processor (Tessa will most likely use a body worn processor until she gets a bit older). The processor is like a giant hearing aid that sits on her ear. The actual implant with the magnet part is encased in ceramic. This isn't a bad thing or a good thing. It's just different than the other two. It could mean that a blow to the head would be less likely to damage the magnet, but they really don't know.
Cochlear--An Australian company. This one has been around the longest. They do have a body worn processor, but the microphone still sits on the ear, similar to a hearing aid (it's not as big though). I believe this has a rechargeable battery system.
Advanced Bionics-Made in America. This one seems to fit us best. It has the most flexibility for Tessa, we feel. It has many battery options and the microphone is actually on the magnet that sits outside of her head, meaning she wouldn't have to wear a piece on her ear. The problem with this one is that it's under a recall by the USDA to check some humidity issues. They have already found that they are not a problem, but we are still waiting for it to be allowed back on the market. The audiologists seem to think that it will be anytime now.
So, that is a synopsis of the 3 different brands. We would like to go with the Advanced Bionics, so we are hoping they get it back on the market before Tessa's surgery.
We have an appointment on Wednesday for Tessa's final Johns Hopkins appointment necessary before the actually schedule the surgery. Once we have a date, we will definitely let everyone know. So far, this is "a go." We really feel that it can help Tessa and that she will progress with it. We feel that it will take the difficulty out of her being able to hear. She will not struggle during school just to hear the sounds and trying to piece together the words. She still will be learning sign. Stephen and I feel that knowing the two languages will be most beneficial to her. If she decides when she is older that she does not want to use her implant, then that is fine with us. I want her to be able to communicate with those who are like her. I also want her to be able to communicate in the bathtub and the middle of the night.
Tessa is still progressing on her signs. The other day she said "want more cracker." She is signing in sentences! She is where she should be for her age. I'm so glad that we decided to sign with her, because now she doesn't face the frustration that so many children feel when they can't communicate. She communicates just fine.
She has an eye appointment on Monday (for the implant as well, just to make sure everything is going well with her eyes). I do think that she does have something wrong with her eyes. We had them checked when she was 4 months old and the dr said that we should come back in 6 months just to check her again, because she did have something, but it might correct itself. At her 2 year appointment, the pediatrician said her eyes were "interesting." Oh, by the way, here are her stats...23lbs 10oz. and 34.5in. as of October 6th. We'll see what they say on Monday at her appointment.
Also, we are getting her involved in a study at Johns Hopkins to see the effect that implants have on children. We will go up there on Dec 9th and they will videotape her for a while (before her implant) and then every 6 months afterwards, they will videotape her and see her progress. Also, am looking into a study by woman in Virginia who is well known Dr. in the field of Cochlear implants. She is doing a study to see what children do with their sign after implants. So, I do need to call her.
Well, this has been longer that I expected, so I need to get some work done on the house before Tessa wakes up and terrorizes it. Hope all goes well with everyone!
Sara
Saturday, October 30, 2004 2:45 PM CDT
It's fall here in Virginia. The weather is gorgeous and we are just loving it.
Since I've been here last, Tessa has not had any more appointments. We have been to Johns Hopkins for a "device discussion." There are 3 different brands of cochlear implant. They all give the same results, but have different features on the outside components. Before I run down the 3 different brands, let me briefly (I'll try) to explain how the cochlear implant works. There is a part in the inner ear called a cochlea. Those who can't hear generally have something wrong with their cochlea, whether it be malformed, non-existent, or something. If the cochlea isn't the problem, usually the hearing loss is called conductive. If the cochlea is the problem, it is Sensori-neural hearing loss. Inside the cochlea (which is shaped like a snail), there are millions of tiny nerve cells that look like tiny hairs. These are called appropriately "hair cells." I believe some scientists are actually working on hair cell regeneration (and no, this isn't for bald people). Some day, that may be an option for Tessa. However, right now, her best option is this implant.
This is how the implant works. There is a piece that is implanted next to her skull behind her ear. This is the part with the magnet it in it. From that piece, there is a long thin electrode that they put inside the cochlea. When a sound is made, the sound will travel down this electrode and stimilate Tessa's damaged hair cells. Those are the internal components (the magnet and the electrode). There is another magnet that attaches to the internal magnet. The signals transmit across these magnets. The second magnet sits on the outside of her head. From this magnet, a wire runs to something called a speech processor. This is a small computer that processes the sounds that come into the microphone. From the speech processor (there are body worn ones and behind the ear ones that are similar to Tessa's hearing aid), a wire runs to a microphone that usually sits on the ear. So, the sound travels into the microphone to the speech processor to the transmitter, across the skin and down the electrode. I know it's kind of complicated and it is a bit hard to explain.
Now for the 3 different types of implants:
Med-El--Made in Austria. This is the newest one to come to the US. It does not include a body worn processor (Tessa will most likely use a body worn processor until she gets a bit older). The processor is like a giant hearing aid that sits on her ear. The actual implant with the magnet part is encased in ceramic. This isn't a bad thing or a good thing. It's just different than the other two. It could mean that a blow to the head would be less likely to damage the magnet, but they really don't know.
Cochlear--An Australian company. This one has been around the longest. They do have a body worn processor, but the microphone still sits on the ear, similar to a hearing aid (it's not as big though). I believe this has a rechargeable battery system.
Advanced Bionics-Made in America. This one seems to fit us best. It has the most flexibility for Tessa, we feel. It has many battery options and the microphone is actually on the magnet that sits outside of her head, meaning she wouldn't have to wear a piece on her ear. The problem with this one is that it's under a recall by the USDA to check some humidity issues. They have already found that they are not a problem, but we are still waiting for it to be allowed back on the market. The audiologists seem to think that it will be anytime now.
So, that is a synopsis of the 3 different brands. We would like to go with the Advanced Bionics, so we are hoping they get it back on the market before Tessa's surgery.
We have an appointment on Wednesday for Tessa's final Johns Hopkins appointment necessary before the actually schedule the surgery. Once we have a date, we will definitely let everyone know. So far, this is "a go." We really feel that it can help Tessa and that she will progress with it. We feel that it will take the difficulty out of her being able to hear. She will not struggle during school just to hear the sounds and trying to piece together the words. She still will be learning sign. Stephen and I feel that knowing the two languages will be most beneficial to her. If she decides when she is older that she does not want to use her implant, then that is fine with us. I want her to be able to communicate with those who are like her. I also want her to be able to communicate in the bathtub and the middle of the night.
Tessa is still progressing on her signs. The other day she said "want more cracker." She is signing in sentences! She is where she should be for her age. I'm so glad that we decided to sign with her, because now she doesn't face the frustration that so many children feel when they can't communicate. She communicates just fine.
She has an eye appointment on Monday (for the implant as well, just to make sure everything is going well with her eyes). I do think that she does have something wrong with her eyes. We had them checked when she was 4 months old and the dr said that we should come back in 6 months just to check her again, because she did have something, but it might correct itself. At her 2 year appointment, the pediatrician said her eyes were "interesting." Oh, by the way, here are her stats...23lbs 10oz. and 34.5in. as of October 6th. We'll see what they say on Monday at her appointment.
Also, we are getting her involved in a study at Johns Hopkins to see the effect that implants have on children. We will go up there on Dec 9th and they will videotape her for a while (before her implant) and then every 6 months afterwards, they will videotape her and see her progress. Also, am looking into a study by woman in Virginia who is well known Dr. in the field of Cochlear implants. She is doing a study to see what children do with their sign after implants. So, I do need to call her.
Well, this has been longer that I expected, so I need to get some work done on the house before Tessa wakes up and terrorizes it. Hope all goes well with everyone!
Sara
Saturday, October 16, 2004 10:09 AM CDT
Hi everyone,
I'm trying to do journals a little more frequently. However, I'm not sure how long Tessa is going to tolerate playing on the floor. She has been very "vocal" lately about her needs and wants. This is a good thing...that she's able to communicate with us much better than before. Yesterday, I got her up from her nap and brought her downstairs and stood her on the floor (usual routine). She started crying and signing "sit sit" and pointing to the kitchen. She has never before told us that she's hungry and this was her way of telling me she wanted something to eat. She wanted to sit in her booster seat at the table. She's never been a big whiner when it comes to being hungry, even as an infant she didn't cry much when she was hungry, which always made it difficult to know when she was hungry. I'm very glad that she's able to communicate better every day. It's great to see her showing us who she is.
Tessa and I went to Johns Hopkins this past Tuesday for a speech evaluation and a basic hearing test. The speech eval went totally normal. The speech pathologist was very impressed at her signing ability. She told me with the number of signs that Tessa has accumulated in less than 6 months, there is no doubt that if Tessa were able to hear normally since birth, she would be talking in sentences at this point. Tessa was able to do lots of things, as long as we signed to her. She was able to pick an object out a set of 5. Then she was able to put the "doll on the chair" when we signed that to her. I didn't realize that she understood prepositions as well as she does. I know she knows "in," "out," "on," and "off."
Then they did a basic hearing test with objects. The first section consisted of sounds. They had an airplane and the "ahhhh" sound was associated with the airplane. Then they had a bunny and with the bunny, the audiologist said "hop hop hop." This was really to determine how much Tessa is hearing and understanding. She did wonderfully with these objects and could get them even when the audi covered her mouth so Tessa could not read her lips. Then they moved to words. The chose an object that was a 1 syllable word like "ball" and an object that was a 3 syllable word like "birthday cake." Tessa didn't do so well in this section. Part of it might have been because she was tired. We do know, though, that she cannot hear all speech sounds, which will make it hard for her learn to speak with only her hearing aid. She is progressing everyday and I think she understands more daily. Sometimes I wish it didn't have to be such a struggle, but if anyone has to do it, I guess Tessa is the one. Her temperament is perfect for this....she works so hard and is very focused, yet is laid back enough to not let things get her down. Many kids with hearing loss get very frustrated and continually throw fits because of their lack of communication. We haven't had to deal with that much, probably due to Tessa's intelligence, which has allowed us to teach her so many signs that she can communicate on the level of a 2 year old with signing. It does help that she's so laid back as well.
A couple minutes ago she was throwing blocks to get my attention, while I was typing. I told her no throwing blocks...that we can only throw balls. I got her ball pit out and now she is having a blast. Thank goodness for the ball pit...it works wonders for keeping her occupied for a good 20 minutes, though it does require some searching for balls and cleaing up afterwards.
Those are the types of things that we are working on at home now...helping her to learn what is appropriate and what is not in terms of playing and getting into things. Because she can't hear us, she doesn't realize that we are telling her "no" when she is getting into something. It requires deliberate intervention, where we go up and tap her on the shoulder and sign no.
Now let me brag about how smart our child is. First of all, she knows her colors: Red, blue, green, yellow, brown, black, pink, and purple. Her teacher says this is not normal for a 2 year old, at least a brand new 2 year old. Also, she is well on her way to knowing her letters. I tried to get a picture of her with her letter puzzle, but the camera was acting up, as was Tessa. We have a puzzle that has the letters of the alphabet and pictures underneath the letter that correspond to each letter. About 3 days ago, I sat on the floor with her while she worked with the puzzle. She would look at me and sign "frog" and then pick up the F immediately, knowing the Frog was underneath. So, I started signing things that were underneath to her, like "grapes" and "butterfly." She knew where each thing I asked her was. When we finished emptying out the puzzle that way, I would look at her and sign another object and she'd search through the pile until she found the proper letter to go with the object. I was very impressed with her ability to do this. I didn't realize that she was associating the letters with the pictures underneath. I always thought it was more of a shape thing for her still, that she enjoyed fitting the letter shapes into their holes. Well, this morning she blew me away again. I asked her where the "F" was, signing the letter "F" and she immediately found it. She was able to find the C, D, F, G, H, and L. At this point she was tired of playing with the puzzle because she had been playing with it for some time before that. I didn't know that she knew her letters! How did she learn these? Stephen does the alphabet with her and has been able to get her to copy him as he signs it, but I didn't know that she knew which letter went with each particular letter shape. If we've gone through them with her, it's been once. She learns things on the first time around!
That's been my huge proud moment this past few days. She's doing so great and everything looks like it'll get better and better for her. They are anticipating that with an implant she will be very close to average, if not above average in speaking and hearing ability (next to her hearing peers). I know, though, that's is a long road and it's not going to be right away. She's not just going to start speaking. I do hope, that in years down the road, she is able to communicate with those around her who don't speak in sign language.
We will be going to Johns Hopkins this Tuesday again for what's called a device discussion. Stephen and I will sit down with the audiologist and discuss the 3 different brands of cochlear implant and try to make a decision on which one we think is best for Tessa. After that, she only needs an auditory skills evaluation and then they will schedule the surgery. I hope and pray every day we make the right decision in regards to this. Please pray that God leads us to what is best for Tessa.
On another front, they are concerned that I may have a possible blood clotting disorder and that this could cause a problem for the pregnancy. They have done some bloodwork and just called yesterday to tell me I have low Protein F. Don't have a clue what that is...but they said it does have something to do with clotting and they want me to have more blood tests done. This could possibly lead to me having to take heparin shots twice daily for the rest of the pregnancy. If that's the case, that's the case and I will do it...just doesn't sound to appealing. But, we'll do what we need to do. I go in October 25th and I believe they will tell me what the treatment plan is after reviewing these tests I will be getting. I'm not really too concerned about it right now. If I need to do it, then I need to do it. They don't seem to concerned about the baby. This all stems from the blood clot that I had after Calla's pregnancy. They just wanted to research it further, not expecting to find much if anything that would require me to have these shots, but it looks like they may have found something. Just wanted to let you know all know about that, since this baby will be a huge part of Tessa's life in the future.
Better run...I think she's getting something off of the table!
Love,
Sara
Wednesday, October 6, 2004 1:39 PM CDT
Hi everyone,
This update might be pretty long, so bear with me. It's full of good news, though.
The last few weeks have been very chaotic here. We have been running all over the place. This is our normal weekly schedule in terms of things Tessa is doing.
Monday-School 8:45-11:45
Tuesday-Speech Therapy-9am, Play Group-11:30-1
Wednesday-Break time!
Thursday-Speech Therapy-10am
Friday-School 8:45-11:45
It doesn't seem like much, but when you add in the need for breakfast, lunch, nap and dinner....it makes for quite a busy day. Adding on top of that, all of our appointments that we've had really takes the time away.
Right now, we are in the process of getting Tessa's candidacy requirements for her cochlear implant fulfilled. Last Thursday, we went to Johns Hopkins hospital. We had an appt at the Listening Center (specializes in cochlear implants) at 8am. Fortunately, we were able to stay at a house nearby called the Children's House. This house serves families who live far away and need housing while their child undergoes medical care at Johns Hopkins. Because our appt was so early and there was no way we'd be able to drive there that early in the morning, we were allowed to stay the night Wednesday night. Unfortunately, Stephen wasn't able to come to that appointment, so it was somewhat stressful juggling Tessa and all of our stuff, but we survived.
Thursday morning we saw Courtney Carver. She talked to me about cochlear implants while Tessa pulled every toy imaginable out of the closet. She showed me the 3 different "brands" and explained to me that audiologically, Tessa is a candidate. I was somewhat surprised. I thought the candidacy requirements meant that Tessa was right on the line, but evidently they have loosened the requirements. They have found that CI can be very beneficial for children with Tessa's hearing loss. Because Tessa is not making real words yet, they feel that she would benefit. After that appointment, we had a psychological evaluation for Tessa. At this appointment, they talked to me about our family, etc. Then they took Tessa and played with her for about 30 minutes while I filled out some paperwork. They came back and talked to the head psychologist, Dr. Ostrander. Then they called me into the office and explained to me that Tessa is one smart cookie. She ranked above the 90th percentile for intelligence in kids aged 2 years and 1 month (which she isn't even yet, but she's close). They were impressed at her signing ability, even though it was a non-verbal test. She was definitely communicating with them. I know that Tessa is very smart, but it's still good to hear it from a professional who specializes in testing children's intellect. Based on her cognitive skills, they told me that their guess is that Tessa would do wonderfully with an implant. They think she would pick up speech relatively quickly and eventually be close to the average child, if not surpass the average child, in verbal language skills. The showed me a chart that detailed how children with cochlear implants average right below the average child in speaking skills. Because of this, we know that some CI kids actually fall above the average child and they explained to me that Tessa could very well be one of the children that surpasses expecatations because she is so smart and has a huge desire to communicate. :) So...now that I've bragged! I hope she does that well, but if she doesn't do that well, I will still be very proud of her.
This past Sunday, Stephen and I drove up to Johns Hopkins again and stayed at the Children's House for an appt on Monday morning with Dr. NiParko. This guy is one of the top in his field. He is very respected and has written numerous articles on CI's. He looked at Tessa's CT scans from May. They were taken at Children's National Medical Center, which denied us a cochlear implant b/c Tessa "heard too well." He was able to give us a diagnosis for Tessa's hearing loss. I'm not sure why CNMC never did, but it comforts me to know that Tessa isn't getting her CI there b/c they obviously missed this one! Tessa has something called Enlarged Vestibular Aqueducts. From what the dr. said, these are tubes that connect parts of her inner ear. Because they are enlarged, more fluid goes through them, which damages the fragile hair cells in the cochlea. The hair cells are what cause you to hear. People with hearing loss have some dead hair cells....the worse the hearing loss, the more dead hair cells. The dr. said this will most likely be a progressive loss and that Tessa will benefit immensely from a cochlear implant. From what I read on the internet, the progressive loss occurs in steps from things such as head trauma. So if Tessa hits her head today, she may lose another 10 dB of hearing. I'm not sure how accurate that is....b/c I only read it on the internet.
Stephen was able to ask the dr the questions he had, though now he has more. I think he feels a little more comfortable with the prospect of Tessa getting an implant. We are concerned about the surgery. Because of these enlarged vestibular aqueducts, Tessa has a slightly higher risk of meningitis. However, they monitor that and will definitely make sure she doesn't get it. If she does, they will treat right away. I don't think that the risk is very high still...it's pretty miniscule, but it is slightly higher with this problem. Dr. NiParko told us that our best bet is to get Tessa this implant within 3 months....definitely within 6 months. So...the ball is rolling. We have not made a definite decision, but so far, all signs point to "CI for Tessa." This will be a lifelong thing and will not make her a hearing person. She will still be deaf. She will not be able to hear when the implant is not turned on. She will, however, most likely learn to speak. She will not have to work so hard to hear people speaking to her. As Stephen says we are "cautiously optimistic."
We really want to give Tessa every opportunity in life. We want her to have the opportunity to communicate with those who don't speak her language (sign). We want her to be able to hear our voices and those of our family and friends. However, somewhere down the line, she may choose that she doesn't want to have her CI on anymore. That's okay with us. If she chooses that as an adult, we still hope to have sign to fall back on. We are not and will not be stopping sign language. She will still be learning sign language. She will need a mode of communication when she is swimming or bathing or waking up or going to bed. We want her to be able to communicate with those who are like her, as well.
Throughout all of this, we've been dealing with the insurance company as well. After our appointment on Thursday, I called our insurance company to "make sure" that a CI would be covered. I know someone told me before that it would be, but I just wanted to be sure. The poor guy on the other end of the phone felt so horrible when he told me that it wasn't covered. He said "This is not my view. I think this is totally wrong, but CareFirst does not cover CI's because they view it as a cosmetic procedure." I was like "WHAT!?!?!" Of course, I started crying and I did feel kind of bad for him, but what else was I supposed to do. I was NOT happy. I can't imagine how they could ever think that giving a 2 year old the opportunity to talk and hear is "cosmetic." I was pretty livid at that point. So I called Tessa's Case Manager at the insurance company. She told me that they do cover CI's, however, she didn't know if our plan covered them. Because our plan does not allow for preauthorization, we wouldn't know if it would be covered until after the surgery. Okay...so I'm going to get her a 50,000 surgery and then "hope" it's covered? Don't get me wrong...we would probably have done it with hopes that we could have gotten a grant (which we are working on). So, when we were at Hopkins on Monday, I spoke with Mary Young (the administrative appointment/insurance lady) about this. She told me that those people probably didn't know what they were talking about. She called for us and thankfully got it resolved. Tessa's implant will be 100 overed up to the allowable amount. I'm not sure what the allowable amount is, but it will be covered, at least mostly. That was music to my ears (or sunshine to my eyes, b/c I read it in email). I was thrilled to have one less obstacle out of the way!! Thank goodness!
So...that's where we stand right now. Tessa is making gains every day and signing all kinds of things. The other day, we were at a restaurant and we were eating red jello. She started pointing at it signing "red please" frantically. She likes Jello we found out. She continues to do new signs and understand new concepts every day. Yesterday, we stopped at a stop light and looked back and saw her signing "stop." Then when we started going, she started signing "drive." That was unmistakable. She learned the concept of moving and stopping. I may have mentioned this one before, but lately while we are eating, she'll point at me and sign "pig." I think she's trying to sign dirty. They are very similar signs. Tessa's teacher said that 2 of the kids in the class were playing a "game" with the signs. They were telling a story about a dirty pig at the lunch table. That would most likely be where the pig calling came from. :)
Well, the weather is starting to cool down here. It is gorgeous outside, so it's time to take Tessa out for playtime! It is just perfect for playing outside. I'll try to keep you all updated about Tessa's progress, especially with all this CI stuff. She has an appointment next Tuesday at 1 at Hopkins, so I'll try to update after that. Thanks for thinking of us and taking the time read about our little girl.
Oh yeah....one last thing. Tessa's going to be a big sister! Thought you all might want to know.
Love,
Stephen, Sara, Tessa, and Peanut due on May 2, 2005
Friday, September 17, 2004 8:07 PM CDT
Tessa started school 10 days ago, on the 7th! My girl is growing up! She is going 2 times a week for 3 hrs a day. Her teacher loves her and says she is doing marvelous in the class. Her class consists of 2 other hearing impaired kids who are 3 (a boy and a girl), 2 kids who have pretty severe disablities and can't talk, so they sign (I think they are both 3) and 2 normally developing hearing children (both 3 as well). So, Tessa is way below the mark for age, however, I think she will do awesome! She is SO smart and is already learning a lot from school. The teacher is impressed at how much sign she knows already. Evidently she has learned everyone's sign names already.
Some of her experiences at school so far:
-She loves the little boy who is hearing impaired (austin). She sits in his lap (which he isn't so fond of) and tries to read books with him. Also, they said that she and Austin made up a game of "stand up, sit down" together yesterday.
-She has eaten lunch there once(b/c I had a dr.'s appt, she stayed later). She was very tired after that day.
-She got to color a car because she drives home in a car.
-She made peanut butter crackers in class and ate them of course.
-She takes her picture down from the school poster and puts it on the home poster when it's time to go home (and vice versa when she gets to school). I got to see this and it impressed me. :) My smart girl.
I'm sure they do tons of other stuff, and being that she's actually only gone 4 times, they've done a lot of stuff. She doesn't care at all that I leave her there. Last time, the assistant came out to the car (they do this every day) to pick up the kids who get dropped off. She had a little wagon and the two kids sat in the wagon. As I was getting in my car, I told Tessa bye and "I love you" and she just waved at me like "bye mom...I'm gonna go have fun!"
She will be going on Mondays and Fridays normally, however, the schedule has gotten messed up this week and will be next week as well.
She is also doing speech therapy and is starting to vocalize some particular sounds. When she sees the cat she will say "eeeoooooowwww!" Most of the time, she leaves off the "mmmm", but sometimes she even gets that. Sometimes she just mouths it. She loves making that sound!! We do some exercises with her that involve her feeling our throat when we speak or make sound and then her feeling her throat. She gets the idea and makes a sound, even if it's not the one we were intending on.
She has a loaner hearing aid right now and we are taking her to VSDB (virginia school for the deaf and blind) to have her tested in staunton. I really trust that they know what they are doing there. They are wonderful with her as well. That will be this coming Friday (Tessa's birthday!!!) Then on Saturday, she's having a party at our place at 5pm! All that want to come are invited! I can't believe she's going to be 2!!!! It seems like just yesterday she turned one! She's changed so much, though! She is able to communicate now, pretty much on the level she should be, even though it's without sound. To imagine, that we've been signing with her since april...so in 6 months, she's pretty much caught up on where she should be! I can't help but brag about how smart Tessa is! :)
Hope you all are doing wonderful,
Sara, Stephen, & Tessa
Saturday, August 14, 2004 10:31 AM CDT
Hi everyone,
Welcome to all the Common Grounder's who might be checking out our website! Sign our guest book...we'd definitely like to know you were here and what you think about the site. :)
Hope all goes well with everyone. I've been informed by my husband that our webpage needs a little updating. :) We're doing well here...really just hanging out. Tessa is flying with her signs. I counted off the top of my head how many she knows and so far I've gotten 65! She knows what all these signs mean and can sign them as well. Most of them are labels, but she is progressing into more functional signs. She will now ask for things and tell us when she is thirsty by signing "drink." Yesterday, Stephen and I signed all the way through dinner. It was difficult, but we really feel that we need to get more proficient in signing. We're starting to hit a roadblock in the amount that we know. Tessa is rapidly catching up and we are looking up signs numerous times a day. We are looking for deaf people or proficient signers who might be able to help us with that. We'd really like to make some deaf friends so that we can get a better idea of the things Tessa will encounter. We would certainly like to prepare her for the difficulties that she will face.
It seems like God is putting signers right in our path. A couple weeks ago, we went out to lunch after church at Baja Fresh and met a deaf couple there. Yesterday, Tessa and I were out and we met 3 deaf women who had 3 or 4 children with them. 2 of the women were sisters and the other was her mom, I believe. One of the children was deaf as well. It was amazing to watch them signing and to see how well their kids sign too. Sometimes, I think I'm doing pretty well with signing, but then I meet proficient signers and am reminded of my complete ineptitude in terms of ASL! So, I really feel like God is putting people in our path...I'm just not sure how to ask them if we could get together with them again. Not something you usually ask someone on your first meeting, especially when you don't even speak their language!
Tessa is getting ready to start speech therapy. We are very excited about that. She will be going twice a week in September. Unfortunately, they only have a couple appointments still in August. I'm very angry with myself for not pushing for Speech Therapy. Early Intervention told me it wouldn't do any good because Tessa doesn't have any language at all. However, after being in touch with other parents of deaf children through the internet, I've been told that EI was WRONG! So, Tessa is starting speech therapy. We are hoping this helps her progress in her language development. Right now, she is at the phase of a 9 month old maybe, in terms of language. She is finally starting to "babble." She tries to converse. We are very excited! We love to listen to her "talk" to us, since we've never really heard it before. So far, we haven't heard any mimicking of words, but she did sign "more" and "cereal" this morning when I said the words, so she must have recognized them. Of course, she might just have been signing whatever signs she could think of to get the cereal!
Tessa will also be starting preschool in September. She will be going to a preschool especially for children with language/hearing impairments. They sign and talk there. I'm very afraid she will come home with signs that we don't know. We'll be out of the loop and start to feel like she must feel (not knowing what we are saying). She's picking up everything at such a fast pace now. She walks down the street signing "flowers" and "trees". She calls bushes "trees." I'm so glad she'll be there, though. I think she's going to learn SO much! She will be the youngest in her class and the youngest to ever start in this preschool at all, I believe. Her birthday had to be by September 30th and she was born on September 24th. She was cutting in pretty close. Good thing she wasn't born late! She will only be 1, when she starts on September 7th! I can't believe my girl is growing up! She's almost 2!!!
We are also in the process of trying to get her a cochlear implant from Johns Hopkins. Her audiologist faxed the info to them on June 9th and has been trying to get in touch with them for the last month. They haven't been returning her calls. They haven't returned mine either. Very frustrating for us! She finally got ahold of someone and was told she was given the wrong fax number! So, I guess she chewed them out they agreed to get in touch with us within 48 hrs. That was wednesday and we haven't heard from them. I guess I'll have to call on Monday. I'm very sick of waiting. I really thing Tessa should be eligible, but I'm afraid they'll say no. I guess it's really in God's hands, so we'll take everything as it comes.
We are all doing wonderfully here. Stephen has been gone quite a bit the last couple of weeks, first in France/Germany and this past week he was in Texas. However, he did have a week off in between that was great for us. We had a great time just relaxing and hanging out together, something we don't get to do very often. It's so nice to have him home!
Thanks for checking out the webpage. Hope you come back and visit us again! I'll try to update more often. I know I'm bad about that! Have a wonderful weekend!! Hope no one is too soaking wet from Charlie!
Stephen, Sara, and Tessa
Friday, July 16, 2004 8:31 PM CDT
Well,
There haven't been any appointments to update lately, but Tessa has been making amazing progress. Let me just say:
"WE HAVE A CONSONANT SOUND!"
This week Tessa picked up the "mmm" sound. It's so exciting to hear her all over the house going "mamamamama." It's like she's really talking. She'll look at us and go "mamamama" with different inflections in her voice. It is too cute. A couple days ago, I went to get her up from her crib in the morning and she looked directly at me and said "mama." I don't know if she knew what she was saying, but it still made me feel good. Today, it almost sounded like she was trying another consonant at one point, but I'm not sure. I imagine many people think it's weird to be saying this about a 21 month old, but for us it's very exciting.
Today, we went to a camp run by Arlene VanHorn (Tessa's teacher that comes in once a week). She is a very sweet lady. Yesterday, when she came for her weekly visit, she was very tired. She's been running this camp all week long at a place called Wilderness Presidential Resort. We went this morning to the pavilion and Arlene directed us to the pool, where Tessa and I swam in the shallow end. She could actually touch the bottom right by the steps. She is a little fish and LOVES to swim. Check out the pics in the picture album of her in her bathing suit at the camp. She really wanted to go back in the pool. Those were from when we were getting ready to leave the pool. While we were at the pool, I talked to a couple parents. I also talked to a woman who was an assistant to a little boy named Chancellor. Chancellor is 5. He brushed by me and touched my arm. She told me that he was blind. He has Usher's Syndrome. He is also deaf. He has a cochlear implant. Anyhow, a few minutes later I saw her signing to him, so I asked her how he could see the signing if he was deaf. He basically has tunnel vision, I guess. Anyhow, I ended up getting to talk to his mom later on in the day, which was nice. All the while, in the pool Tessa was enviously watching all the older kids go down a froggie water slide. She wanted to so bad, but alas, she still too little. Maybe when she's old enough to actually go to the camp. We got to meet lots of teenage girls who were thrilled to meet Tessa. They conversed with her in sign language, though it was somewhat of a one way conversation. The only thing she told them was "bye bye." :) They signed to quick to really catch their names. They were very nice though and I was able to catch a little bit of what they were saying. I guess I can't really say that I know sign language yet, just various signs that Tessa uses or will use in the near future.
After we left the pool, we went to the gym for the campers to play a game. While they were playing, I met Chancellor's mom. Chancellor's little brother is one month younger than Tessa. His name is Aidan and he and Tessa had blast chasing each other on the other side of the gym. I wish I would have gotten pictures of that. They were too cute.
Then we went on to eat lunch at the pavilion. Pizza! mmm...except Tessa isnt' a big fan of pizza. Right before the pizza arrived, I was standing there and heard a huge revving sound and a crash. Arlene accidentally drove her van into the pavilion! No one was hurt, thank goodness. She said that the gear got stuck and she couldnt' get it into reverse. Then instead of the brake, she hit the gas. She broke through a flimsy wooden fence and hit the corner beam of the pavilion. It splintered and pretty much broke. Evidently, she came close to hitting a little autistic boy. I felt so bad for her. I imagine she was terrified. I called her later today to make sure she was doing okay, but she didn't answer her phone. Thank goodness no one was hurt. I felt so bad that after so much work running this camp, her last day had to end like that. Anyways, we ate lunch and I talked with Sally, who will be Tessa's preschool teacher, come September. She's very nice and has a son who's 13. His name is Jacob and he's in a wheelchair. She said he has a brain malformation and a heart defect. Tessa liked playing with the horn on his wheelchair. :) I learned a lot about Sally. It was nice to have the opportunity to get to know her better.
We also got to meet Rebecca who will be in Tessa's class, not to mention countless other older children. As I said before, I didn't know much about what they were signing, but I tried to understand. We had a wonderful time and Tessa was zonked out just about as soon as we got in the car. It was a great day, other than Arlene's accident. It's very nice to get to meet other families and be able to immerse Tessa in an environment like that. Someday, she'll be able to go to that camp, I suppose. I just hope Arlene is still running it. She is such a sweet lady! Well, better get going...time for bed! I've got to get those pictures up as well! Hope you all have a wonderful weekend!! I know we are looking forward to relaxing. Stephen even got monday off because he'll be gone next weekend. So, we're really looking forward to that!
Love,
Sara, Stephen & Tessa
Thursday, June 24, 2004 2:02 PM CDT
Hi everyone,
I'm sorry I haven't been updating much lately. Things have slowed down a little bit. Also, we went to Michigan this weekend for Tessa's great great grandpa's 100th birthday. We had a blast and got to see Grandma Haywood. Tessa had a wonderful time, though the first night there was difficult. She woke up a lot during the night. Tessa had a wonderful time meeting so many family members that even I hadn't met yet.
On to Tessa's hearing status...she is doing well. She continues to amaze us in how quickly she learns. I was thinking today about how she knows car. Well...I don't ever recall even trying to teach her car...she just must know it from watching us drive the car. When we went to Staunton last week, the found that her left ear hearing has "improved." That could be because they got wax out of her ear or because she is learning to "listen" for the sounds. Usually hearing doesn't just improve like that. It used to be a curve, going from a higher decibel level in the lower frequencies (90dB) to 70dB in the higher frequencies (backwards of normal hearing loss. Now, it is pretty flat all the way across, at about 70dB. Also, they did a test called bone conduction. They put a little headband on the bones behind her ears. This sends the sound signal directly to her cochlea, bypassing all the other things inside the ear. Therefore, it shows what her true sensorineural hearing loss is. It tells us whether or not she has any conductive hearing loss (things such as fluid, something wrong with the bones, and pretty much something wrong before the sounds get to the cochlea. So, what they found is that she could possibly have some conductive loss in the lower frequencies. However, the responses that they got could also be "vibral-tactile" meaning that she responded because she could feel the sounds, rather than hear. The vibral-tactile responses occur in the lower frequencies, which is where her responses were. It's somewhat confusing to explain in words without being able to show. So, in the coming years, when Tessa can tell us what she can hear, they will follow this more closely and see if they might be able to solve a little bit of her hearing loss with a possible surgery (if they find that she does have some conductive loss).
Tessa is learning more signs and she is vocalizing much more. We got her new earmold today, which has cut down tremendously on the squealing feedback. She is also starting to imitate sounds. Arlene has a bunch of little vehicles that she uses with Tessa. She will drive each one around and make a different sound (affiliated with that particular vehicle). With the airplane, she flies it and says "ahhh." The boat she says "put put put." Yesterday Tessa was imitating these sounds, and even differentiating between the different vehicles. So...that was VERY exciting. She is responding when I say "tessa no." She turns around because she knows she's getting into something she shouldn't be. She doesn't always stop, but usually turns around to look. That's only if the house is quiet, though. Background noise makes it much more difficult for her to hear. We may possibly be looking into a more powerful hearing aid for her other ear, as well, but will seriously look into that at the end of summer, after she's gotten used to this hearing aid.
So, that's where we are at right now. Arlene did say that Tessa has sensory issues as well as her hearing loss. That is what causes her to roll, rock, and lately she takes our hands and puts them on her face and squeezes. This is due to her need for touch and various sensory input. So, she suggested that we talk about something called a "sensory diet." She will discuss this with us more next time. Also, she told me about some clubs that she is starting up and invited us to come to her camp for children with hearing loss just to look around and watch the kids. Obviously Tessa isn't old enough to attend camp. :) They are also starting a club called Signs for Fun where they go out once each month on various outings. Also, she told me about something she starting called Signing Playtime for the younger kids. Some kids she knows who are deaf and in high school will be leading it and just basically giving us a chance to get to know each other. I'm excited about meeting other parents.
So, that's where we are at now. I will try to be updating more. We don't have an audiology appointment for another month, so that'll be our longest time without an appointment! Thanks for thinking of us! We love you all!
Love,
Sara
Wednesday, June 16, 2004 4:53 PM CDT
Hey everyone,
I've been reminded by Aunt Emma to update! ahh. Tessa had her visit to Staunton yesterday. She is actually hearing better than before. We aren't sure if that's just because she's learning to listen or if it's because they cleaned some of the wax out of her ears. She still doesn't have much hearing, but she has some useable hearing with hearing aids with is good. Carol also said she's very socially mature and they suggested we think about getting a frequency compression hearing aid on the other ear.
I will have more to update later in regards to possible insurance paying for aids and Tessa's IEP meeting for the preschool she will be attending (which we had today). But right now I've got to run!
Love,
Sara
Monday, June 7, 2004 9:26 AM CDT
Hi everyone, just a quick journal entry to let you know that Tessa CT scan has come out fine. She does not have any physical abnormalities in her ear. She has both of her cochleas and they are both intact (a concern in terms of her possibly getting a cochlear implant in the future). We are still waiting for the connexin test to come back. I spoke with Dr. Schessel from CNMC and he gave me this info. He said that the neurological radiologist did say that one cochlea looked a little "fuller" than the other, but Dr. Schessel thought he was just reading into it. That would not explain Tessa hearing loss in both ears, either. Also, he said that if Tessa does have the connexin gene, that does not mean that we will have a large risk of having future deaf children. He said that usually it is a mutation that just occurs and didn't come from either one of us. So, that is good news, as it sometimes feels like our genes don't work real well together. Well, I gotta get going. Time to chase Tessa. Have a wonderful day everyone!
Love,
Sara
Saturday, May 29, 2004 9:27 PM CDT
Hi everyone...we're back! Yesterday, we went to Staunton, VA (about 2 hrs away) for Tessa to have more of the same testing. We went to the Virginia School for the Blind and Deaf. This is the school that Carol Wiegle works at. Did I ever tell you all how wonderful she is? She is just great with Tessa and keeps her attention. She signs to Tessa continuously (which we're working on more as well). I can pretty much sign most phrases that Tessa needs, though not all. So, they did more booth testing where Tessa is in one booth listening and the audiologist (Casey Moorehouse) was in the other booth determining the sounds and making an audiogram (a graph that shows which decibel level Tessa can hear each frequency...each child has a different audiogram and they are used to program hearing aids properly...they are very important). Tessa did wonderfully. I got to sit in the audiologists booth. Usually Tessa is sitting on my lap, but at VSDB, they try to make it the most controlled environment as possible, so they get more accurate results. They put Tessa in a high chair and Carol kept her occupied. I got to watch on a monitor how Tessa was reacting. At first, she was look and point at the moving stuffed animal that they light up when she turns to sound as reinforcement. Then they started teaching her Conditioned Response, where she drops a block in a bucket when she hears sound. She doesn't have it quite down yet, but she did wonderfully for only being able to really hear for less than two weeks. She was actually understanding the concept. They said that most kids don't get it at this age...some kids don't get it until they are 2. So, for her to be able to do it at 20 months with only 2 weeks of hearing experience was quite amazing. They were very flabbergasted. What can I say? We have a smart kiddo. :) I'm sure you already knew that though. So...Tessa's audiogram shows that unaided in her left ear she can hear 90 decibels at 250 htz (roughly the sound of a lawnmower), 85 db at 500 htz, 70db at 2000 htz (frequency is getting higher), 75db at 4000 htz (a little better than hearing a telephone ring). A normal child hears all those frequencies between 0 and 15 db. In her right ear (the worse ear) she starts in the same spot...about the lawnmower sound. Then it goes down...she hears 95db at 500 htz, 110db at 1000 htz (roughly the sound of a chainsaw) and 115db at 2000htz. The last one was worse than 120db at 4000htz...which means she couldn't hear a jet engine. So...that is Tessa's hearing level without her hearing aid. However, with her hearing aid, she was able to hear all speech sounds at about 40db. That was a very good sign, though they'd like it to be more like 30 db, so we will be reprogramming her hearing aid again. So...what we know from her audiogram is that she is being helped by her hearing aid (yeah!!), but it could be better and we want it to be better. She is officially classified now as severe-profound hearing loss. Her ears slope opposite directions. Her right ear has a more typical hearing loss, getting worse in the higher frequencies...while her left ear is atypical, getting worse as the frequencies get lower. Odd...hopefully we'll figure out why that is. So...that's where we are at right now. June 8, she will be getting her hearing aid reprogrammed and hopefully a new earmold (the plastic piece that is molded to the shape of her ear) because we are getting a lot of feedback (loud squealing noise). Tessa is doing wonderfully on her signs as well. She is starting to sign two signs at once (i.e. "more eat", "more drink", "drink please", etc.) She's just blowing me away at how fast she learning. It's very amazing to watch. I wish you all could see her in action. She's just wonderful. On the flip side, she is nearing the age of 2...just 4 months away...and it's starting to show. She is throwing some fits now...when she doesn't get what she wants...we are trying to nip those in the bud asap...but I think it's really just the age. She certainly doesn't get what she wants when she does it. :) Other than that, she's doing well. Our neighborhood pool opened today and we got to go swimming (we also locked ourselves out of our house:). It was a little cold for her liking, but she enjoyed herself none the less. She's a little fish. :) Well, it was wonderful to update you all once again. I love bragging about my little girl! We are so proud of her. Sign the guestbook if you'd like...we like to hear from you...even if you've already signed...thanks for all the input so far. We love you all!
Love,
Stephen and Sara
Thursday, May 27, 2004 7:35 AM CDT
Hello Hello....How is everyone doing? Hope things are going well for you all. We're doing well here. Tessa hasn't really had any major things going on for a while. We've just had a visit on Tuesday from Carol Wiegle from the VA School for the Deaf. She worked with Tessa and taught us some games to play. She did tell us that Tessa has very weak hands. I've known that for awhile...but no one ever seems concerned about it when I tell them. She tries very hard to push the doorbell, but she's just not strong enough to do it. So, Carol said she needs to play with playdough and draw on dry erase boards and then erase it. I'm not sure why Tessa would have weak hands and I hope it's nothing serious, but she didn't seem to think it was. It won't affect her signing b/c signing has more to do with dexterity than strength. Also, she mentioned that Tessa's balance issues could be due to some sort of damage to her vesitbular (balance) system. Your vestibular nerve is right near your auditory (hearing) nerve. The system is also right near your inner ear. So, basically whatever damage was done to your hearing system could have affected teh vestibular system as well. She said it's very common for profoundly deaf children to have balance problems. Tessa definitely has one, but is really working through it. She also said that Tessa has a very "deaf" quality to her voice. I'm not sure what that means, but it may mean that Tessa will have a harder time learning speech than some deaf children. She told me this when I asked her how soon we could expect her to start mimicking consonant sounds. So...that's what we got from her visit. Yesterday, Arlene VanHorn came and worked with Tessa. She just plays with Tessa and tries to get her to mimick sounds and signs. Tessa really enjoys it. Tessa is doing very well with her hearing aid. The compression settings (this is where the hearing aid takes sounds that are very loud and compresses them so they don't damage Tessa's ear) were changed so that less compression was happening. Donna (the audiologist) believes that the hearing aid was compressing all sounds to a level below what Tessa can hear. So...the good news is...Tessa is hearing with her new hearing aid! The last week or so, she's been turning to sound! I just about jump up and down every time she does. I've never known anything different. Lately I've been thinking "Wow...it's amazing how a normal child's hearing works" because I guess I've never really known anything else. It's weird to watch other people's children her age just mimick words like it's so easy...because it's so incredibly hard for Tessa. Just a thought. I may have already written that in a previous journal. :) So...Tessa is hearing...which is good. Sometimes when I call her name, she'll say "aaah, ahhh" like she's trying to say "Tess-a". 2 syllables...that's good. We're working with her like crazy. :) She's also keeping her hearing aid in much better. She does occasionally pull it out...but not nearly as much as she was. I'm so proud of her. :) Be sure to sign the guestbook, even if you already have once before. We like to hear from you! Keep checking up on us...we're doing good and hopefully will have some good news to report next time as well. Just like Dori in Finding Nemo "Just keep swimming, just keep swimming." That's what we're doing....just chugging along, teaching Tessa communication. Her signs are getting quite good....she signs More, Please, Shoes, Socks, Dog, Cat, Turtle, Fish, Cracker, Drink, Eat, Baby, Banana, and some other's I can't think of. Once again...thanks for checking in and sign the guestbook. We'd love to know you were here!
Love,
Sara
Friday, May 21, 2004 9:21 PM CDT
Hi everyone...another journal...not too much to add. I did get a call from the hospital about Tessa's bloodwork. Instead of it taking 3 days, the told me that this particular test takes 30. Okay...I would have appreciated knowing this previously. But anyhow...at least I know now. Hopefully we'll get it relatively soon, because it is already approaching 30 days! Wow...times flies. I can't believe my little girl will be the big 20 (months old that is:). It seems like we were just celebrating her first birthday. I miss my baby...but I love my toddler. I love all of her stages. I admit that sometimes I get jealous because other kids this age are talking up a storm and my little girl can't even babble...but I know we'll work around it. We are learning to communicate with her and play games with her to teach her how to communicate. I only hope that soon she starts learning vocal sounds, now that her hearing aids seem to be working. I put her hearing aid in today to see if it was working properly and it about blew me away! I can't believe how loud it is.
In regards to the hearing aid, Tessa pulled it into 3 pieces on Wednesday and continues to pull the tubing out of the earmold (the part that fits in her ear). The tubing takes the sound from the behind the ear piece to the earmold where it goes into her ear. Today, she pulled the earhook off and since then it's been feeding back like crazy. I'm going to try putting cotton in the vent (a little hole in the ear mold to let air in). Many times an open vent can cause feedback in children's hearing aids. So, we'll see how that works tomorrow. Hopefully it will work.
Other than that, things are the same old thing here. Just learning sign and playing with Tessa. I love her so much...though I must admit that her behavior is approaching that of a 2 year old. The past few days she has been throwing herself on the floor and having tantrums. I just stand and watch, waiting for her to finish. I don't want to teach her that tantrums get her attention, so I just don't bother her while she throws a pity party. I have to admit, it is somewhat amusing, though I imagine it will get quite old for me soon. She's also trying the screaming and grabbing thing when she wants something I have. We are trying to work with her on that and use it as a teaching moment where we teach her to sign "Please....banana" for instance. She is learning...and she is using the sign for "more" more often, which is good. So...that's our life. Just wanted to mostly update about the connexin blood test and that it will still be a little while before we find out anything. Thanks for reading about our little munchkin. :)
Love,
Sara
Wednesday, May 19, 2004 8:12 AM CDT
Hi everyone. Long time, no update. Not much has been going on lately. I have somewhat taken a break from trying to figure out what is wrong with Tessa's hearing and just taking it in stride and working with her on signs. Now we are working with her also on language. It seems to me that she is finally getting the concept of sound with the hearing aid, so maybe she does not have auditory neuropathy..which is a good thing. Any answer is a good thing. We are trying to get her to say "ba ba ba" and "ma ma ma." Part of the frustrating thing for me is seeing so many babies who are younger than her and just learned it normally and they do it with such ease, but she has to concentrate so hard just to figure out how to say "ba ba." She will look at our mouths and open them repeatedly, but the only sound that comes out is a sound, so it's more like "aa, aa, aa," but it's a start and it's nice to know that she does hear it because she is trying to mimic the sounds we make. We have to decide whether to take the FM (lexis) system back. We haven't discussed that yet, but we don't think it would be beneficial to take her hearing aid back at this point because it seems she is getting some sound finally. Maybe she's just learning that it's there.
We are also trying to keep it on her every waking moment, except in the bath and in the car (because she can get it out and eat it without us being able to get back there fast enough). I hope this helps. I must admit, I have been somewhat lax on this issue and regret that. Sometimes, though, when she wants to take it out, it's so hard to fight with her. I don't want it to become a negative thing in her mind. Eventually, I'm hoping that she gets to the point that she is upset when we take it out, because she wants to hear the sound. I imagine that will come.
I went garage saling this weekend and bought her some more age appropriate toys...I bought her a Little Tikes desk and a tricycle that converts from a rocking tricycle, to a tricycle that I can push with her on it it, and finally to a tricycle that she can ride on her own. I figure that one will grow with her. She needed some more outdoor toys since it's getting warm here. She really enjoys the desk and has gotten crayon marks all over it already from scribbling off the paper. Someday...I'll send you all an originial Tessa work of art! :)
In regards to the tests that have STILL not come back yet, I've been calling and calling and calling and the lab still hasn't gotten them done for some reason. They better not tell us we have to go up there and get it done again. I'm getting somewhat perturbed about the issue because I want to know! I haven't spoken with her Dr. about the EKG (I think I wrote about that one here, but I'm not sure). On Friday, at a sick appointment (a sinus infection, I guess), the dr. ordered an EKG, saying that some deaf children have something called Prolonged QT Syndrome. I don't think she has it b/c we have no family history and it is a genetic thing, however it was a little unnerving to see that it causes sudden death. Like I said before, though, I don't really think she has it. So, I will let you all know when we get the test results...hopefully soon! I'm so sick of waiting!
Hope you all have a wonderful rest of the week!
Love,
Sara
Friday, May 14, 2004 4:17 PM CDT
Oh my...this has been a weird day. Yesterday I finally gave up and got Tessa a dr.'s appointment for her nose. It's constantly running, for weeks. I thought she might have allergies. We saw Dr. Welham (her Primary care physician who had to sign all of her referrals when we were still on HMO). We've never seen her before, only Dr. Sprinkle. However, she knew about Tessa's deafness and asked if we had an EKG done yet. Uh..no...didn't know we needed one. Evidently, there is something called Prolonged QT Syndrome that is associated with sensorineural hearing loss (what Tessa has). Of couse, she didn't tell me anything else about it and just told me to go to the lab to get an EKG done. So, we went right over there. Did I mention Tessa hadn't had a nap yet? :) I asked both the lady who took our info and the lady who did the EKG what Prolonged QT Syndrome was. No one knew. So, now that Tessa has had her EKG, I looked it up on the internet. Needless to say, this is going to be quite a long weekend. I have no idea how many people who are deaf have this genetic disorder, but it can cause sudden death if not treated. Nice, huh? It causes tachycardia, cardiac arrythmia and syncope (fainting, I guess). I would have appreciated it if the Dr. would have told me this, rather than me finding it on the internet. I'm not really that concerned about it, though, because I don't really feel like Tessa has it. I'm not sure why, but I don't. I guess when the do an EKG, the points of the waves have different letter names. Q and T are two of them and the condition is diagnosed by seeing a longer duration than normal between the Q and T points. Hopefully we'll get the results on Monday. They said we probably would. Also, Tessa is getting an antibiotic called Omnicef for a possible Sinus infection. I'm not too concerned about that at all. Still haven't heard back from the Dr. about her blood test. How frustrating is that? I would appreciate an answer! It's been 8 business days...and they said 3! Aaarggh! It's very aggravating. Other than that, we are doing well here. Tessa is getting her much deserved nap. She had no nap at all today. I'm exhausted too and can barely keep my eyes open...but I'm afraid that I won't wake up if I go to sleep. As usual, I stayed up too late last night! I just can't sleep when Stephen isn't home. He'll be home tomorrow...so that's exciting. Well, hope you all are doing well...Thanks for looking at Tessa's page. I hope you have enjoyed it so far. Feel free to keep checking in for updates...I'm going to try to keep it updated so everyone has an idea how Tessa is doing.
Love,
Sara
Wednesday, May 12, 2004 8:48 PM CDT
Hi everyone,
Just an update on Tessa's CT scan today. So far, no results, which I expected (not to get any results I mean). We got there at 9:45 and waited until about 11 to get her into the anesthesia area. They told us to be there at 10 am, so I'm not sure why we had to wait until 11. I think they just got backed up. Janice went with us. She helped a lot with Tessa. Tessa was getting quite hungry and thirsty, since she had been without food or drink since the night before. We got in and they gave her chloral hydrate (a sedative). She hates the taste, but we got it down her and she fell asleep in about 20 minutes. It helped that she was already tired. I was glad when she finally fell asleep because if she had taken any longer, they would have had to give her more chloral hydrate. ick! We got to go into the CT room with her. They tilted her head back at a very weird angle to get the CT. She woke up in Short Stay Recovery almost as soon as we got there. She was very disoriented and upset. They told us that they had wanted her to stay asleep for another 2 hours to let the medicine wear off. However, they kept trying to take her blood pressure and the cuff wasn't working, so it really mad her mad. After much flailing and screaming, she went back to sleep. We ended up leaving between 3 & 3:30. I stopped by the ENT office to ask for her test results, but they still didn't have them. I'm surprised...because the lab said they'd have them within 3 days! So, now I'm hoping they get them before Friday. That way, Dr. Schessel can look over them and tell us whether she has the C-26 gene or not. I'm anxious to know. Tessa still been a little tipsy tonight from her day. She is eating now and walking better, though is slightly off balance. She is in bed and probably very happy to be. All in all, it's been an incredibly long and tiring day! Thanks for checking in! Love you all!
Tuesday, May 11, 2004 1:59 PM CDT
Alright everyone, get ready for a doozy! This entry will be Tessa's hearing history up until now. I just want to introduce her first 19 months to you all...especially those of you whom we don't see much.
When Tessa was born on Sept 24, 2002, she had a newborn hearing screening done at the hospital. She failed on one ear and we were sent to Portsmouth Naval Medical center a month later, on Halloween, to have her hearing tested again. At her newborn hearing screening, they told us it was probably just gunk in her ears from being born. Evidently many kids fail it.
So, we went to PNMC and she passed her tests with flying colors. So, I left there thinking that my child could hear wonderfully.
As an infant, she made sounds early, etc., however she never progressed to the babbling stage (baba, mama, dada, etc). She never said any consonant sounds. I was concerned that she didn't startle to loud sounds, but just chalked it up to her being such a great and easy going baby. I mentioned it to her pediatrician a few times, but was just told that I was being overly concerned.
After we moved into our new house in Fredericksburg, we finally took the step of requesting a hearing test. I was beginning to get very concerned because I would go into her nursery in the mornings. She'd be awake and making noise, but if she wasn't facing the door, she had no idea I was there. I could talk to her for 5 minutes and even yell and she would not turn around. Of course, once I touched her, she wanted right out of her crib. So, we convinced our new pediatrician to write a referral for a hearing test, even before our first appointment with this new pediatrician.
On December 22, 2003, Tessa and I made the trek up to Manassas (about an hour and half away...our insurance doesn't participate with very many specialists in our area). She had a sound field test. This is where they put Tessa and I in a sound proof room. There is a window and the audiologist sits on the other side of the window. Tessa sits in my lap and there are speakers on either side of her. The audi makes sounds out of the speakers separately to see at what decibel level she responds at in each particular ear. Also, they change the frequency and the type of sound. Tessa didn't respond a whole lot and confused the audi. The audi then did a tympanogram (measuring the vibration of the eardrum). She told me Tessa's eardrum wasn't vibrating properly and that she probably have fluid in her ears. So, we were sent to an ENT.
A few weeks later, we drove to Woodbridge (about an hour) to see Dr. Parameswaran. At that visit, he told me Tessa had fluid in both her ears. We could get tubes or wait to see if it goes away. Since Tessa hadn't been responding to sound, I told him that I thought it had been there for awhile and that it wouldn't go away. He asked if she responded to voice at all. I told him no and that she'd never even turned to her name. He agreed that tubes would be the solution. He told us that he was 99% sure that it would solve her hearing problem. She was 16 mo old when she got her tubes on February 5, 2004.
After her tubes, she started walking beautifully. Before her tubes she wasn't walking at all. The tubes corrected a balance problem. Unfortunately, they didn't correct her hearing problem. A few weeks later, we went back for sound field testing (this time with Donna Mallory, Tessa's current audiologist. She works at Dr. Para's office). She did not get any responses out of Tessa in the sound field still, so we were told to go and get a brain test done...an ABR.
The ABR was done at the end of March at Children's National Medical Center (CNMC). A week later, we went in and Dr. Para explained to us that Tessa had no hearing up to 95 dB in her right ear. In her left ear, she could hear 55 dB at some frequencies and 75 dB at other frequencies. Decibels is the loudness/intensity of the sound. Normal hearing is below 20 dB. This meant that Tessa had profound hearing loss in her right ear and moderate to severe in her left ear. If we didn't do anything, she would never learn to talk. We ordered a hearing aid for her left ear that day as well as an FM system...all in all, spending over 4000$. Thank goodness for family that can help. We could never thank Uncle John, Aunt Emma, and both of our sets of parents. They have helped us tremendously with the financial aspects of this ordeal.
A week after this appointment, Tessa got her hearing aid. We took it home and fought with her to keep it in. She's doing slightly better now...as long as she doesn't remember it is there. However, she still did not respond to sound. Donna called and asked how she was doing and I told her that Tessa still didn't respond, even to loud sounds. She called CNMC to check on the reliability of the ABR. She was told that when they interpreted the ABR, they took her first brain response and knocked off 10 dB. So, in other words, her brain first responded at 65 dB, so they said she had a 55dB hearing loss. This is very odd. I'm not sure why they do this. So...we figured she wasn't hearing because the hearing aid was programmed wrong. Donna reprogrammed it and we were on our way.
The next day, Carol came from the Virginia School for the Deaf. She gave us wonderful advice for signing and helping Tessa learn to keep her aid on. She also did informal testing on Tessa with loud noisemakers behind her ears. That was the day I first heard of Auditory Neuropathy. We still aren't sure if Tessa has this, but sometimes it really seems like she does. Carol explained it as a problem with the auditory nerve, and not necessarily the hearing structures (the cochlea mainly). Most people with hearing loss have damaged hair cells in their cochlea. The cochlea is the round organ in your ear that changes the sound into an electrical impulse and sends it to your nerve. In auditory neuropathy, something is not syncronized, so the sound is very confusing to Tessa (if that's what she has). AN is also very inconsistent. Sometimes it seems like Tessa hears some and other times it's nothing.
I have spoken with a very famous doctor in the ENT/audiology field about Tessa and possible AN. He was very helpful and gave us some suggestions. After doing research on her previous hearing tests at birth, I found out that they were two different tests. The newborn hearing screen at the hospital was a simplified ABR (pass or fail...most ABR's give decibel levels of hearing). Tessa failed one ear. Her test at PNMC at one month was an OAE. OAE's measure the waves that are returned out of your ear when a wave is sent into the ear. Most people with hearing loss have absent OAE's (no returning waves) because the outer hair cells in the cochlea are damaged or non existent. However, people with AN frequently have OAE's that are present (meaning a wave is returned, making the dr.s believe that the patients hearing is fine). That is why we left PNMC believing that Tessa could hear. Dr. Berlin says that the fact that Tessa failed an ABR and passed an OAE means she has AN. I'm still not positive yet, though. If she does have AN, her hearing aid will not help and will be returned. It just adding to her confusion of sounds. People with AN hear mainly static. Depending on the degree of AN, some may be able to understand and hear quite well, with only mild static (mild) and other cannot understand anything (profound AN). I tend to think that Tessa falls on the profound range (if she indeed does have AN).
About a week ago, we had another appt at CNMC in DC with Dr. Schessel. This one was to determine whether Tessa was a cochlear implant candidate. Cochlear implants are very helpful to children with AN and even normal hearing impairment, though results vary in each child. Dr. Schessel ordered more sound field testing. This time, the audiologist (a new one, Stephanie) got plenty of responses from Tessa. Her speech reception threshold (SRT) was 65 dB in her left ear. Much better than I've ever seen it. She's never turned her head to me, even if I were yelling. Dr. Schessel told us that Tessa could hear to well for a cochlear implant. They also did OAE's and they were gone (absent), meaning that he thought Tessa didn't have AN. However, I have since learned that some AN kids "lose" their OAE's over time.
The next day, we had an appt with Donna, our audiologist. She called Johns Hopkins in Baltimore, and UVA in Charlottesville and both reported that Dr. Schessel was incorrect in his denial of Tessa's candidacy. He really should have tested her without her hearing aid and then with it to see what the difference is. If there is no difference, they she is not getting any help from a hearing aid. That will truly be what determines her cochlear implant candidacy.
I forgot to mention that at the appt with Dr. Schessel last wednesday, they drew blood to see if Tessa has the Connexin-26 gene (causes progressive hearing loss). If she does, then the mystery will be solved. We will know it wasn't AN and we will move on from there. If it is C-26 is not there, then we are back at square one, wondering if Tessa has AN or not. I've been trying to get ahold of someone at the Dr.'s office to find out the results but have not gotten any response from them. I'm anxiously awaiting the results. I will update when we get them.
Also, tomorrow, Tessa has a CT scan to determine whether her cochlea's are formed correctly. If they are not, then she may not be eligible for a cochlear implant. We will see. Well...that's our big story for now. Hopefully no more long posts like this!! :) Just wanted to give you all some background and let you know what we are doing. I'll be updating tomorrow to let you know how Tessa's CT went. Thanks for being so special to us.
Love,
Sara
Monday, May 10, 2004 10:42 PM CDT
Alrighty, I just wrote an incredibly long first journal entry documenting all of Tessa's previous history, etc. and it didn't save it! Aaarrggh! Well...I can't write it all out tonight again, so I will try to tomorrow. For now...just know that Tessa is having a CT scan on Wednesday at Children's National Medical Center (from now on, this will be known as CNMC). We are also hoping to get the results from a blood test she had last wednesday to determine whether her hearing loss is caused by the Connexin-26 gene. If this is the case, her hearing loss will be progressive. If it is not the case, we are back to square one, trying to figure out why she has such severe hearing loss. Thanks for looking at the page. Hope you enjoy the pictures. I will try to update on Tessa's history and pertainent things to know so that you'll have a clue what's going on when I talk about the various tests, etc. that she's had and may be having. I'm getting extremely tired after almost having written a book, so I'll just write my "book" tomorrow again. Thanks for checking out Tessa's webpage!
Monday, May 10, 2004 9:38 PM CDT
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