Saturday, August 11, 2007 7:21 AM CDT

Hi Everyone ~
Please check out the link to L.I.F.E (Laurens Institute for Education) where Sarah is currently attending.
http://www.laurensinstitute.org/

Thursday, August 9, 2007 6:58 PM CDT

Hello Everyone!
Well it has been a very fun and interesting last 2 weeks. Sarah started school July 31st. She is at a new school, but same teacher and she has been adjusting very well there. Also Sarah has started going to a center based habilitation program called L.I.F.E (LAURENS INSTITUTE FOR EDUCATION) http://www.laurensinstitute.org/
It is a brand new facility in Gilbert, about 10 minutes away from the house. The first few days were pretty rocky and since she has been used to getting her way all summer she was not used to working as much as she has been. Today and yesterday have been her best days thus far. Yesterday Sarah took at least 5 steps independently at least 3 times and today she did the same thing, but she was the one who was initiating the desire to walk. Plus she is interaction more and more with adults and slowly with a few kids. She even shared her favorite toy today.
The therapists and habilitation specialist are soo wonderful and so sweet to all the kiddos there. I can see a bright future for her.
On a less lighter note Sarah's seizures are increasing every day. Some are very mild and short, others are stronger and longer. We have been keeping a video diary and the teachers and Laurens are keeping track as well. The doctor said they are going to set up another E.E.G and another MRI. They have increased meds on her and she isstill spacing and even has begun to twitch. After those tests are done....then they are going to look at a possiblilty that she may need another surgery. That we hope is the worst case scenario. Please keep her in your prayers!
Also... we have finally moved into our new home. It is very nice, but need quite a bit of work. The back yard needs to be done and we need to get blinds up... we have these crazy paper blinds....ug!!! But all and all we are slowly getting settled. We are very happy that there are quite a few kids here for the girls to play with and so far the neighbors seem very nice. We will get pictures of Sarah at her new habilition facility here as soon as we find our cameras. (lol)
Hannah started school this week too and she is sooo happy to see her friends again. Summer was too long for her to be away from them. She is very upset that she has a different teacher this year. Her previous Teacher, Ms. Crystal... Hannah says she loves all the time and even though her current teachers are great... she know what she loves and is happy she does get to see her, even if it is for a few moments. Hannah is a jabber box... and still loves to play like crazy. I swear she has 10 times the energy than the ENERGIZER BUNNY has. I wish we could bottle up that energy she has and take it in a pill form. Oh... Ohhh we would love to have that kind of zoom again.... lol!!!
Take care and Bless you all for all your thoughts and prayers!
Love,
Darin and Vicki

Sunday, July 15, 2007 9:28 PM CDT

Hello everyone!
Yes...I know it has been quite sometime since we did an update. Soo sorry!!! Summer has been so crazy and challenging. We have been so busy with so many things.. some good and some not soo good.
Sarah has been doing the best she ever has this summer. We have a temporary Habilitation person working with her one on one and following all the therapists therapies. She has been just amazing with Sarah. I can’t explain it...but they seem to have such an unspoken strong bond. Our habilitation lady seems to know how to read her and how to respond to her. Sarah is almost at the point where she will walk on her own... she rarely uses her walker... but she needs to every day. She is communicating more and more, not so much with words…but she will show you what she wants… Sarah has become such a tease too. She is soo funny and has the sweetest laugh. She too has shown us soo much of her temper when things do not go her way. That is good for us to see her do that... but not so much for her I am sure.
We have had many, many doctors appointments too. We recently took Sarah to a behavioral clinic and we did a 2 hour intake process... they asked us everything under the sun, not only things pertaining to Sarah, but family issues, health issues, financial issues.... all of which can negatively effect the processes with Sarah. It was good to let off some steam and to see that Darin and I as parents, especially parents of a special needs child are not alone.
Sarah also had a super great check up at the doctors, and is right on track as far as weight and height. She also was evaluated for a talking device and hopefully we will get that soon. She is going to see a neurofibromatosis doctor in the next few weeks and she even had her braces updated because she has outgrown them and she is getting so big.
We are still waiting for a speech and feeding therapist and hope to get that started really, really soon.
Qne thing that has changed is Sarah’s episodes. She seems to he having them more and more and they are stronger. It is as if she goes into a catatonic state. Her eyes are open, but her head usually cocks down and she is just not there. I can kiss her, tickle her and no real response. I even can move her left arm all around and she does not get mad or fight to keep me from doing that. Almost always if I play with her left arm, she has a fit. So I do know something is not right. We have told the doctors and they up her medications too. We are keeping a video diary to show the doctors exactly what is going on.
With all of that…. We are moving too...We will move into a slightly bigger home, in the same subdivision, that in it self has been very hard and stessful for us all. For long term however… it will be a good thing. I know a lot of our stress has really affected the girls, especially Hannah. She has not slepted thru the night in over a month. Constantly up, wanting to be with me all the time, wanting to watch cartoons or play or what ever. We do not give her any kind of sugar at all and took the tv out of her room, which only played videos. She is never hungry… we are making sure she eats at least breakfast and dinner. The doctor said just to keep track of this and should see her again in a few weeks if this keeps up. We are just about caved in with that. We would love to eventually start getting a full nights rest again, even if it is 3 nights a week. Hopefully when school starts for both girls we will get back on a better routine.
Thats all for now, we will pop back once we are settled in our new home.
Love always,
Darin, Vicki
Hannah and Sarah

Saturday, April 14, 2007 4:29 PM CDT

Hey Everyone!
Just wanted write another update on Sarah. Well we finally receive her walker last Friday. The very second she was strapped in to her walker... she took off like a "bat out of hell.... she just walked and walked and walked through out the house and we took he on the back porch, she was doing soo good that we even took her out front and she walked up and down the street 3 times. (We have a street that has 4 houses on our block)
Each and ever time she is in it.... she just has this glow that overcomes her... like she knows she is now a "big" girl and can conqure anything.
She has become more verbal.... a lot of babbling and even being soo funny with making growl noises.... she will look at you with this sarcastic ornery,yet innocent and sweet animated way, almost like Al Bundy when he belches... it is the cutest thing and she makes sure each person that is around gets a shot of her growl noises. She will even growl back at you if you growl at her. Its her new game!!!
She also has developed such an attitude. With her hair in pony tails... if she is mad or does not want to do something you need her to do or is in a teasing mood ... those tails go a flipping. She whips her head around and will take off scooting or really fast in her walker. She also is playing a game where she will put her hand around your neck...almost like she is chocking you... and if you make a growl noise... she laughs and laughes and gets the biggest kick out of it.
We are currently working on trying to get her not to throw things when we are doing therapy and boy ohhh boy does that make her mad. But at least when we do use a disciplinarian tone, she does get the hint. Especially Daddy with his tone. She will listen!!!! Not willingly... but she will. We really think parts of her cognativeness is at age level and some things are not. Regardless.... we are sooo blessed that the progess she has made in the past 8 months has far exceeded what we dreamed of and beyond. We know we still have a ways to go... the biggest challenge is and will be for a while is getting her to eat. We hope we can get that going in the next 6 months.

Thank you again for all of you who have supported us. Your love, help, guidance, prayers and even all of you who have been there for us emotionally have been our rock. We could not of gotten thru what we have if we did not have all of you. You have been such a blessing to our lives. It has been such a huge part of were we all are today. We THANK YOU from the bottom of our hearts. I will add more pictures soon!
Love,
Darin, Vicki, Hannah and Sarah!

Saturday, March 24, 2007 3:31 PM CDT

Once again it has been a while since our last update.
This one is a very- very- very good one.
Since our last updates... she has made soo much progress.
We are not sure what happened... but we are soo not questioning it at all. It is like a light has come on. Sarah is just becoming a big girl that has the sweetest and funniest personality and we are able to see HER, SARAH ZICAFOOSE and enjoy HER.

Sarah is walking... almost independently, with some assistance, we mainly hold her right hand and away she goes. She is laughing alot and is soo much more happy than fussy...which has been so nice for us too. She is babbling and even at times, she is trying soo hard to talk too. She has recently said a few words, like Mama, ok, yes, done, and even last Monday at dinner she did say my name, Vicki, which surprised all of us... even Hannah. She even is playing and teasing us and having soo much fun. She even teases her sister and it is such a blessing to see them finally interacting and having fun and playing back and forth and even understanding the teasing. We are sooo thankful and thankful to GOD that she has come this far.

Also, we finally had an overnight video monitoring EEG at Barrow this past Thursday night. The most WONDERFUL NEWS AS OF YET... Sarah is NOT HAVING SEIZURES. The spacey episodes are just that, like day dreaming or reorganizing her thoughts or maybe just some down time. That is what is soo wonderful.

The not soo good news is that there is some brain issues with her left, areas that are underdeveloped and/or have some damage. So we need to gather the pre surgical test and recent tests and send them to her current neurologist and we will go from there.

We know sooo many of our prayers have been answered. We are soo blessed to have this wonderful girl in our lives and double blessed to have her wonderful and caring sister too who loves her sister soo much.

Thanks again for keeping us in your prayers.

We love you all!

Darin and Vicki

Sunday, January 21, 2007 1:43 PM CST

Hi!
I know it has been several months since our last update. With the holidays and sicknesses going around... it has taken time to recoup and regroup. But all in all things have been going pretty good.
December was crazy. We were just busy with Melissa our Respit gone and with school out. Both girls were sick with the bug and between Christmas and New Years, Sarah was not feeling well at all. She was soo irritable during a visit to Darin’s dads house that we knew it was just not here being her normal fussy. I took her to the Urgent Care on New Years day and she had a double middle ear infection. That took some time to clear up plus we still think she is getting her 2nd set of molars. Lately she has been waking up around 2am and playing in her crib for at least several hours. Most of the time she is fine and not fussy... but we are still waken up and sometimes can not go back to sleep. URGGG!! It makes the next day a long one.
But on a good note.... the week Sarah went back to school after the holidays, she was back to herself. The teachers could tell she was happy and she has been doing really well at school. She does have a gait trainer at school and she rides that for a good part of the time she is there. They have noticed that she is making her self pretty clear when she does or does not want to do something.
We also finally got her walker ordered... after months of trying to do so. That is a whole other pain in the bootie issue. But it is done and will be here with in a few weeks. I am sooo excited about that because Sarah has been walking along the furniture and the walls and she just has such a drive to progress. We have also weaned her off most of her meds except the anti seizure med. It is a new one Lamictial and she seems to have more clarity and not so grouchy. Her moods are better and we all see such a positive difference in her. She is even initiating play with her sister and is even initiating play with us as well. It seems like her anxiety has dramatically mellowed too. Even at the doctors for check ups, she does not freak out when they are taking her vitals like she used to.
All of this has been a huge step for her. We are soo proud of her and the progress she has made since taking her off Keppra and Reglan.
We think she is still having seizures and we are waiting to here from the doctor to set up an over night EEG just to be sure. Plus she is still having bowel issues. She recently had a Colonoscopy to make sure things were ok and that helped clear her up. So we are still running around taking her to the doctors which seem like weekly, but better to be safe than sorry.
As for Ms. Hannah, she is doing terrific, she is soo advanced in her language and her attitude and she is soo in tune to what is going on. She has become such a huge helper and has actually been interacting with Sarah too. It is wonderful to see them play.
Please keep us in your thoughts and prayers and wish us luck in finding a Respit person, the right one.
Love,
Darin and Vicki

Friday, October 20, 2006 8:45 AM CDT

Hi everyone,

It has been a long several weeks and I have not had the time to check in. We have quite a bit to share.

We had a real bad scare a few weeks ago.
Sarah had a pretty bad episode at school on Oct. 4th. The teacher called me as said Sarah was sitting in circle time, where all the kids sit in a chair and are singing "Good-bye" to the teacher. She was sitting in her chair, suddenly she became quite, spacing off, then her right side started twitching, her head fell forward, she turned blue and began to fall out of her chair. The teacher laid her down on the floor and was going to start cpr just as the school nurse came in. Just before she was going to call 911 and do cpr, she came too, took a deep breath and exhaled and was very red faced and started crying.
I called her pediatrician and her neurologist and let them know what happened. Her neurologist said to up her Keppra from 2.25 MLS to 2.50 MLS and just to closely monitor her and to wait for the appointment in November with Dr. Rho at Barrows Neurological Institute.
We have never-ever seen this happen to her before and as far as we know this is the first time she has ever had such an episode. So I called Barrows explained our situation, and asked if we could get her in any earlier. The receptionist said they just had a cancellation and we could get in next week. So my mom and I took her to the appointment. On the way there she was fine. The very second we got into the lobby of the hospital, Sarah started freaking out. Our appointment was at 10am, but asked to be there at 9:30 to fill out paperwork. We wound up arriving at 9am. She screamed and cried for an entire hour. Finally she settled down and passed out in my mom's arms... just long enough to talk to the doctor. She woke up however about 15 minutes later and was totally fine.
The short of the visit is that the doctor is going to go over her entire file, and records. We are slowly going to change her meds from Keppra to Lamictal, we feel that the Keppra is causing behavioral issues. Then one he is done reviewing all the records... he will determine if she needs an imaging study done. She would have to be in the hospital for 3 days. Then from there he will see if there is any part of the right side of the brain still attached to the left, and if so... seizures could be crossing over. If THAT is the case... then a second surgery might need to be done. We are just having to wait and see.
This week... Sarah has been in a wonderful mood. A few weeks ago... she had an accident where her right first fingernail was caught in a blade that operates a back massager. It wound up tearing off her nail. We rushed her to the urgent care and luckily her nail will be fine. She was put on antibiotics and the next week she was a bear. I think she had some kind of reaction to the antibiotics. She was fussy as can be. Not sleeping... crying all the time and just had fits of frustration. We were just drop dead exhausted.
Darin and I had to go out of town that weekend for my grandmother’s funeral. That in it self was A LOT of stress. We left Sarah here with her grandma and took Hannah and I think that had some kind of impact on Sarah. We got home real late Saturday evening and she was already asleep. We did not see her till the next morning. From Sunday till today, she has been in an extremely great mood. I do not know if it is again a coincidence... but I truly think she missed us a lot and was a bit worried why we all of a sudden left.
So now we are in the waiting process and waiting for answers from her new doctor. We will keep you posted.
Please continue to keep us in your prayers. Thank you all once again for all your love and support.

Love,
Vicki

Sunday, September 10, 2006 10:55 AM CDT

Well... we have something VERY VERY interesting to share with you all. This morning around 7:00, we all just woke up and we just brought the girls in our room to hang out for a while. We had both girls on the bed and out of NO WHERE.... Sarah starts humming "TWINKLE TWINKLE LITTLE STAR"!!! Just enough for Darin and I to look at each other with stunned amazement! At the same exact time I was thinking, "Did I hear what I thought I did....???" Then Darin said, "Was she just humming TWINKLE TWINKLE LITTLE STAR???" I said to him… "I was just thinking the SAME EXACT THING!!!" We were both just blown away and we both got very excited!!!
Just an hour later.... Darin was giving her morning feeding and she had a few of her music toys on her tray and he started humming the same song and she joined in. just a bit... just enough for him to really tell she was actually doing it!
Sarah also is doing much better at school and is having more good days than not so good. The teachers and therapists are really postive and they really know how to work around her and with her. The support we are recieving has just been wonderful. Darin and I have a meeting with the school speech therapist on Wed. night. This is like a parents group to teach us how to teach her. I am really looking forward to this meeting.

Hope you all are having a wonderful weekend!
Love,
Darin and Vicki

Wednesday, August 23, 2006 9:04 AM CDT

Hi Everyone!
Yesterday we had the girls 3 year check up and everything went well. Sarah was very nervous and scared to be there because most of the time she is at the doctors and she has to have test done that are not fun. She does not know what to expect. Both girls are all caught up on shots and so none of that was needed. After her exam she was pretty happy. Hannah's went really well. She was very cooperative asking all kinds of questions and being her silly self.

After the girls were both done, we spoke with the doctor for quite a while. I mentioned the possibility of Sarah having autism. Immediately he said she DID NOT have autism. It was that clear cut. So we talked about it for a while, but the fact remained the same that he said she did not have this. I was so relived and happy…. very happy for her. Finally some good news. Sarah has so many other issues to deal with and if she had this, it would be even harder for her. She needed a break and this is it. We now just need to concentrate a bit more on the behavior part, but still keep our awareness open to things causing her pain. We also need to concentrate on teaching her more to communicate with us and we also need to concentrate on being even more observant and try our best to decipher if it is pain or just being frustrated and upset. For so long all we wanted to do was to make sure she was happy and pain free. Lately she has been throwing fits and crying and getting upset. So we started to call the doctors and make appointments to check into this. She had soo many tests this past week and we are slowly, but surely ruling thing out. So far things are pretty normal. She went to the dentist and she is getting her 2nd set of molars in. That is one thing in itself that is causing her pain. Her shunt is fine, but still having issues with not being regular. We contacted her GI for that and are waiting to hear back. We do feel however she is having seizures again. We call them “spacey episodes.” They are not like they were before. So she has tests set up in the next few weeks for that and we have contacted UCLA.

But now with her going to school and having the therapists there, that will help her soo much on top of what she has at home. Plus being around other kids, I think we will really start seeing some more progress. The more she has on her side, the easier it will be for her to get to that point where she will be able to tell us how she feels, if she wants to do or not do something etc… She does let us know in her own ways on certain things and we try our best to respond to what we think she is trying to tell us. Sometimes we are right… other times we are not. But as time goes on… it is getting better.

With that is all for now. Please keep Sarah in your thoughts and prayers. Thank you again for all your love and support.

Love, Darin and Vicki

Monday, August 14, 2006 9:17 PM CDT

Hi Everyone. Yes sorry but it has been a while.
Well Sarah started school on July 25th. The day was pretty busy with all the newness that the first day brings. Sarah did pretty well adapting to the new environment. The teachers are very nice and very attentive towards her. At first, I guess like any other parent I was very nervous. I was also nervous for her and for the teachers. Because she is not talking right now, I needed to be her voice. So the first 2 weeks, I would take her to class and sit way back and just watched. When something came up, I would let the teachers know when she would do something what it meant and what she needed. That way they learned her cues and it would be easier in the long run for everyone.

This week will be the first week I will take her and leave. I am very nervous, but I really do trust the teachers. I have to start to let go, just a little, because Sarah needs this and needs to experience independence, even if it is just a small amount. I am almost positive that she is aware of what is going on. She seems to be adapting well, and the kids are so sweet to her. Last week 2 girls got into a struggle over who was going to give Sarah her backpack. It was very cute and it was almost in a protective way. The teachers though it was very cute and I got teary eyed. These sweet and cute kiddos are starting to interact with Sarah more and more each day. That in it self is very heart warming. I have met all the school therapist that will be working with Sarah and even the speech therapist gave us some really good ideas on working with her. They are all wonderful.

Sarah now has an additional Hab person Linda that comes to the home on the days that her Respit/Hab person Melissa is not here. She is a very nice lady. We have not yet developed a program, we are just winging it for now until we see how much she can handle. Sarah has been very fussy the past few days and I think she had gone into overload and just can not process everything that is going on lately. So we are just going to have to read her cues more and give her smaller breaks in between her sessions.
But just to be safe, we are covering all our basis, so she has several appointments, the neuro surgeon to check her shunt, her dentist to see if she is still teething and check her teeth out and hopefully her gasterologist.
But to be on a more positive note, Sarah is really making more and more efforts to walk. Even a few times with the PT, she stood all by herself with out any support from furniture. She is learning as we are learning to communicate with her and I think that is making her very happy. Sarah is such a smart girl, we just need to find that place where we both can communicate to each other and I think things from there things will be great. As for eating, well, we are starting from the beginning and work soley with sensory and take it from there.
It is all one step at a time and I know things will fall into place and she will become a very happy, confident, and productive person. We love her soo much and all the work it takes to get her where she needs to be is so worth it, she deserves it.

Her sister Hannah is doing very, very well too. She started school as well, at a different school, different days, different hours. Life is hectic, but is great too. She loves school and has quite a few friends. She is my sweet social butterfly. Still goofy as ever too. But as her sister, she has hit the 3 year age. Who was it again that coined the phrase the “THE TERRIBLE TWO?” I wonder sometimes if they actucally had kids??? ( lol)

Well, have a great day everyone and again, thank you for all your support and thank you for being there when we needed you. It means alot and it really helps us get by on those days that are hard and crazy. We love you!

Darin, Vicki, Hannah and Sarah!!

Monday, July 3, 2006 9:29 PM CDT

Hi everyone! We have had such a wonderful few weeks.
First of all.. the girls turned 3 on June 10th. We had their party at our house and with all the family.... it was packed. It was a great and wonderful time!!!
Since my last journal entry, Sarah's progress has just taken off. I wish I could post a picture here of her. Sarah's eye contact with us is getting stronger all the time. She has her own way of communicating, we just have to pay attention to her and figure out what she wants. She is even moving her left arm soo much more than ever and best yet, she has even began walking along the furniture. She will pull herself to stand and will guide herself with her right side against the couch and really walk!!! We are soo excited!
Sarah will be fitted for braces on July 14th and once she gets them, we will see what she will do. As always, it is on her own free will. She will do it when SHE is ready and willing.
As for eating... not yet at all. I am just wanting to take one step at a time with her. She will conquer that in time.... I just know it and I know her.
As for Hannah... she started preschool on June 12th and she loves it soo much. She goes 2 days a week for almost 3 hours each day. She already has a few friends too. The first day I took her... I was very nervous. She went straight to a doll house where 2 other girls were and she told me to come and get her in 2 days. No separation anxiety there! (lol) Sarah will start her preschool on July 25th and she will go for 4 days 2 hours each day. She will still receive in home therapy as well as therapy at school. I am so excited for her to begin a new journey in her life. I have all the faith in the world in her and I know in my heart and soul she will make it.
That is all for now... Thank you all again for all your prayers, love and support. We love you all!!!!
Darin and Vicki

Monday, July 3, 2006 9:29 PM CDT

Hi everyone! We have had such a wonderful few weeks.
First of all.. the girls turned 3 on June 10th. We had their party at our house and with all the family.... it was packed. It was a great and wonderful time!!!
Since my last journal entry, Sarah's progress has just taken off. I wish I could post a picture here of her. Sarah's eye contact with us is getting stronger all the time. She has her own way of communicating, we just have to pay attention to her and figure out what she wants. She is even moving her left arm soo much more than ever and best yet, she has even began walking along the furniture. She will pull herself to stand and will guide herself with her right side against the couch and really walk!!! We are soo excited!
Sarah will be fitted for braces on July 14th and once she gets them, we will see what she will do. As always, it is on her own free will. She will do it when SHE is ready and willing.
As for eating... not yet at all. I am just wanting to take one step at a time with her. She will conquer that in time.... I just know it and I know her.
As for Hannah... she started preschool on June 12th and she loves it soo much. She goes 2 days a week for almost 3 hours each day. She already has a few friends too. The first day I took her... I was very nervous. She went straight to a doll house where 2 other girls were and she told me to come and get her in 2 days. No separation anxiety there! (lol) Sarah will start her preschool on July 25th and she will go for 4 days 2 hours each day. She will still receive in home therapy as well as therapy at school. I am so excited for her to begin a new journey in her life. I have all the faith in the world in her and I know in my heart and soul she will make it.
That is all for now... Thank you all again for all your prayers, love and support. We love you all!!!!
Darin and Vicki

Sunday, May 28, 2006 4:31 PM CDT

Hi Everyone!
Well... Sarah is making even more progress lately. She has a music therapist Lee, she comes once a week. When Lee is working with her, she is very precise with her routine and rarely changes it. We can see why it has worked soo well.
Lee uses a tambourine during the session, along with other instruments.
Well, one day I saw one at Target and brought it home just to see what she would do. The very second I presented it to her and shook it, she immediadtly starting moving her left arm up and down and was trying to hit it. Darin and I got soo excited that and she kept doing it. So a few times a day now we will give it to her and she will do her best to hit it with her left. Even a few times she has held the tambourine with her right hand and tried to hit it with her left.
Also... she was in her room this morning after breakfast and she was just hanging out. After a while, Darin went to look for her and found her holding the side of her play pen and trying to walk. Even though there were pillows everywhere, she still managed to walk on the pillows. Not for very long.... but long enough.
My gosh! She is just doing sooo wonderful!!! My heart melts and I just jump for joy everytime she does things like that. I am soo proud of her and I just know can do wonders!!!

Friday, May 19, 2006 3:02 PM CDT

Well, I know, it's been quite a while since our last post. We have been just once again been busy.
Since our last post, Sarah is really just doing so many amazing things. The best way to explain it is.....It just seems like this cloud that has surrounded her for so long is slowly disappearing. Each and every day, she is becoming more and more aleart to her surroundings and people around her. She is in such a happy mood more so than not, she is still working on standing and bearing weight longer and longer and believe it or not... she is even trying to walk!!! She is currently sleeping in a play pen. I think if makes her feel safe because it is so low to the ground. Well, there have been several mornings that I've gone into her room to get her up and basically she already is. I've caught her standing and playing with her toys that are on the side of a twin bed that we have next to her play pen. She just smiles and looks directly at me when doing so. I will post a picture of her doing so.
We even have her on video walking all by her self in her crib.
I just know that our little sweet angel is going to really go far and I just can not wait to share that with her.

Thank you all for all your love and support!!!!
Love, Darin and Vicki

Friday, May 19, 2006 3:02 PM CDT

Well, I know, it's been quite a while since our last post. We have been just once again been busy.
Since our last post, Sarah is really just doing so many amazing things. The best way to explain it is.....It just seems like this cloud that has surrounded her for so long is slowly disappearing. Each and every day, she is becoming more and more aleart to her surroundings and people around her. She is in such a happy mood more so than not, she is still working on standing and bearing weight longer and longer and believe it or not... she is even trying to walk!!! She is currently sleeping in a play pen. I think if makes her feel safe because it is so low to the ground. Well, there have been several mornings that I've gone into her room to get her up and basically she already is. I've caught her standing and playing with her toys that are on the side of a twin bed that we have next to her play pen. She just smiles and looks directly at me when doing so. I will post a picture of her doing so.
We even have her on video walking all by her self in her crib.
I just know that our little sweet angel is going to really go far and I just can not wait to share that with her.

Thank you all for all your love and support!!!!
Love, Darin and Vicki

Friday, May 19, 2006 3:02 PM CDT

Well, I know, it's been quite a while since our last post. We have been just once again been busy.
Since our last post, Sarah is really just doing so many amazing things. The best way to explain it is.....It just seems like this cloud that has surrounded her for so long is slowly disappearing. Each and every day, she is becoming more and more aleart to her surroundings and people around her. She is in such a happy mood more so than not, she is still working on standing and bearing weight longer and longer and believe it or not... she is even trying to walk!!! She is currently sleeping in a play pen. I think if makes her feel safe because it is so low to the ground. Well, there have been several mornings that I've gone into her room to get her up and basically she already is. I've caught her standing and playing with her toys that are on the side of a twin bed that we have next to her play pen. She just smiles and looks directly at me when doing so. I will post a picture of her doing so.
We even have her on video walking all by her self in her crib.
I just know that our little sweet angel is going to really go far and I just can not wait to share that with her.

Thank you all for all your love and support!!!!
Love, Darin and Vicki

Thursday, February 9, 2006 4:16 PM CST

Hi Everyone!
I am so sorry we have not updated our journal lately... we have been busy with the girls being sick, us being sick and recovering from the holidays and still getting our house in order. Whew... it has been a crazy few months.
Well, Sarah has been progressing so wonderfully lately. The middle of January, I started her on fish oils. Grandma's chiropractor suggested it. One is a combination of Omega 3, Flaxseed, Borage and Olive oils, the other is pure fish oils. I started her on these 2 oils on a Thursday, by Monday we had already seen a difference. We were just amazed on the difference in her moods, in her efforts to do things, and just a difference all around. I was still very skeptical... but I still am giving it to her and as each day goes by she seems just to feel soooo much better and is doing so many things she has never done before.
She is standing on her knees all on her own when she is playing with the piano, or reaching for a toy on the table. She has even crawled in the tub. (Of course when there was no water there) She has even stood up all on her own, while leaning against the table or the tub. She is soo much more alert and really focuses when you are talking to her. She is singing... not singing words... just hums and loud sounds. She seems to be a very happy little girl. She is also smarter than we ever imagined. She tries to hide it.... but she can't fool us. Sarah is such a sweet and a very good girl.
So as each day goes by, I have become more and more of a believer in the oils. It seems to make her feel better, so so she is in a better mood and is willing to challenge herself more and she feel great when she knows she has accomplished something that was hard for her to do before.
We also just came back from UCLA. We were there this past weekend and she had her appointment on Monday with the doctors. We took with us the MRI and the EEG she recently had done. Both doctors were amazed how well she looked. There was no indication of seizures on her left or does not look like any seizures will cross over. Her left brain is growing and developing normally. She does have seizure activity on the right, but because it is totally disconnected, they should not cross over. They were very pleased at the over all results. I was more than relieved. It is like a huge weight taken off all our shoulders.
As for us... we are all doing well. Hannah is busier than ever, getting into everything and talking sooo much. She is an extremely curious girl and questions everything you do. She too sings all the time and she too is getting smarter every day. Hannah has become soo helpful when I need help with Sarah and things around the house. She is really a good girl and great to her sister. We are truly blessed!!
Thank you all for your thoughts and prayers. We love you!!

Sunday, October 30, 2005 11:07 AM CST

Well, Sarah's appointment went soooooo -soooooo wonderful!!! We are soo very glad we went.
The therapist, Rene, that worked with her was awesome!! We went into a small office/therapy room and she sat Sarah in a special high chair. She began just talking to her. Sarah looked her over for quite a while. Then finally she smiled so big at Rene. Sarah was in the best mood today.
The best news of all of this, after Rene worked with Sarah for a while, she actually got her to take sips of water from a spoon that vibrates. She took at least 8 to 10
sips and was actually leaning forward towards the spoon and doing it all herself. No forcing or anything like that. I about burst into tears, tears of joy!!! Laura (Sarah's speech therapist), Melissa (Sarah's respit care taker) and I were just in awe! It was sooo wonderful.
The session was video taped as well and we will get a copy of it. So we will be able to share it with all our family and friends.
At the end of the session, Rene concluded this is basically a trust/behavior issue. She believes this is not completely neurological. She may not be able to suck... we just do not know that for sure, but she can swallow. It is just about trust and letting her initiate taking feedings herself.
She is going to send us a very strict guideline to follow along with the video tape to our home. We are all very excited to get this started with her.

I have put a picture of Sarah taking water from her special spoon on this site. Please feel free to see it.

Sunday, October 30, 2005 11:07 AM CST

Well, Sarah's appointment went soooooo -soooooo wonderful!!! We are soo very glad we went.
The therapist, Rene, that worked with her was awesome!! We went into a small office/therapy room and she sat Sarah in a special high chair. She began just talking to her. Sarah looked her over for quite a while. Then finally she smiled so big at Rene. Sarah was in the best mood today.
The best news of all of this, after Rene worked with Sarah for a while, she actually got her to take sips of water from a spoon that vibrates. She took at least 8 to 10
sips and was actually leaning forward towards the spoon and doing it all herself. No forcing or anything like that. I about burst into tears, tears of joy!!! Laura (Sarah's speech therapist), Melissa (Sarah's respit care taker) and I were just in awe! It was sooo wonderful.
The session was video taped as well and we will get a copy of it. So we will be able to share it with all our family and friends.
At the end of the session, Rene concluded this is basically a trust/behavior issue. She believes this is not completely neurological. She may not be able to suck... we just do not know that for sure, but she can swallow. It is just about trust and letting her initiate taking feedings herself.
She is going to send us a very strict guideline to follow along with the video tape to our home. We are all very excited to get this started with her.

I have put a picture of Sarah taking water from her special spoon on this site. Please feel free to see it.

Tuesday, October 18, 2005 6:45 PM CDT

Hi guys!!!

Wow has time flow by!!! We have not posted in such a long time. We are finally getting settled into our new home and we now have most of our house organized. What a nice feeling.

Well Sarah... she is doing sooo wonderful! Since we have moved to our new home, which is a single story, she has really progressed. She is now really scooting every where, getting into things, cabinets, toys, trash cans ect... and she just seems soo much more happier. Her little personality is shining thru and she has developed quite an attitude.

She is moving her left arm more and more and she reaches up for you when she wants you. She will scoot to you most of the time when you call her. She sleeps better here than she ever did at our old house and she just seems so much more sociable, especially with the therapists.

As far as eating...well we are still working on that. We are taking her to a feeding clinic in Tucson for an evaluation. Hopefully they will devise a program for us for her.

As far as walking, she is not yet doing that. She really wants to. We will be taking her to a physically therapist here in Queen Creek till we can get one that comes to the house. If not, then we will take her to one that specializes in children. Center based clinics that are designed for children, usually have special equipment that are beyond just the basic physical therapy.
So we hope with all of that… she will be eating and walking soon.

Thank you again for all your thoughts, prayers and e-mails. It truly means soooo much!

Love,
Darin, Vicki, Hannah and Sarah

Saturday, August 6, 2005 7:59 AM CDT

What can I say about my sweet Sarah... she still surprises me every day. Lately she has been scooting a lot. She is really roaming around the living room and really wanting to stand. She gets herself on her knees by the couch and tries her best to pull herself up. She is playing with food and putting her hands in her food and then putting her hands in her mouth at her high chair. That is a huge mile stone. She used to get soo mad anytime food was presented in front of her... now she plays with it.
Sometimes... you can hear her in her room when she is trying to go to sleep mumbling and we swear she is saying "Mum" and trying to talk.
She is playing a lot more too. Even taking toys away from her sister.. which Hannah is not to happy about. But it is soo fun to watch them interact together. I get very excited when I see them playing and doing things together. That too in it self is a remarkable mile stone.

Thursday, June 30, 2005 7:40 PM CDT

Well not a whole lot has changed since my last entry. Sarah is still doing very well. She is still scooting around A LOT and rolling around A LOT and reaching out for you and makes very good eye contact when you call to her or your talking to her. She is even intentionally playing toss the toy back and forth. Not for any length of time... but enough for her to know it is a fun game.
Her physical therapist brought her a "stander" last week to help strengthen her legs and to help her body get used to standing in a proper position. She is not too excited about it…. She gets a bit upset, but after a while she is kinda ok with it. We leave her in it for no more than 10 minutes at a time.
She has also started making this grunt noise when she does not want to do something and I think she even has a bit of a temper tooo. (hahaha)
We are still working every day on the feeding issues. Her speech therapist and I are looking into taking her to Tucson where there is a doctor who is a feeding specialist. Hopefully we can do that soon.
A very cool think happened his morning. She was playing and working with her occupational therapist. This is just probably a coincidence, but we asked Sarah a question….I do not even remember what the question was…..probably if she wanted to do something….. but it sounded like she replied …. HHU…. it was clear as a bell. We all looked around at each other, my mom the therapist and I and we were just eyeball popped shocked…a happy shocked. I hope is was intentional…I am going to say it was.
That is all for now.
Thank you all again for your thoughts and prayers. They really do mean soooo much!

Thursday, May 19, 2005 11:43 AM CDT

This is great news... yesterday Sarah actually started to do the army crawl. She has been very receptive on lying on her tummy lately and now she is starting to move on her tummy. She has had a very - very good several days. She has been in a great mood, even with the therapists and has even said MOM... not sure if it was on purpose... but she was humming and saying ahhhhhhh and mom came out too. We are sooo happy... she is even started to put her self to sleep and for the most part sleeping all night. Thank Goodness.

Wednesday, May 4, 2005 9:20 AM CDT

This week Sarah has really had a wonderful developmental spurt. She has been working on her own getting into the crawling position, she has been taking her sippy cup alot lately. Our respit care giver Melissa gave her a full sippy cup of water in the morning and by the early afternoon, it was almost gone. She will take small sips on her own. She beared weight on her left arm during her therapy session yesterday... all on her own. When her OT was here... she clapped when she was told to and even banged cups that she was holding in both hands together when told to. That was wonderful to see.
She has been humming and making alot of sounds. She has been in such a great mood lately. Smiling and responding and just being happy.
We are slowly working with her to get herself to sleep instead of patting and rocking her for hours. We have had pretty good success with that as well. There have been a few nights where she really fought it... but for the most part she is doing very well with going to sleep.

Sunday, March 13, 2005 2:43 PM CST

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