History

Wednesday, February 8, 2006 9:47 PM CST

I know! It's been way too long since I've updated! First and foremost, Max has been doing great. He is fully enjoying kndergarten and has so many friends. We are very fortunate that the kids go to a small, tight-knit elementary school -- every adult knows who Max is and knows about MPS. Of course, they all love him too! He is doing so well in school too. I'm going to scan some of his recent work and put in on the picture page.

Kelly and I were married in November -- so between that and the holidays, things have been crazy in our house since school started. And now we're trying to move, so the craziness continues. The kids are all happy and thriving though. I'm coaching Andrew's basketball team. Amanda practices with us -- I really wish she would play, but she doesn't think she's good enough. (She's very wrong about that!) She is doing her competition cheerleading thing though and she seems to really enjoy that. She had her first competition last weekend and her team took Second Place.

Kelly and I -- along with the help of our company, Foglio's -- are planning a golf outing for MPS this summer. I will let everyone know about the details as they are worked out. Please don't forget to sign the guestbook if you stop by! We think about all our fellow MPS families often!

Wednesday, February 8, 2006 9:47 PM CST

Sunday, October 30, 2005 8:26 PM CST

Hello All!!

As usual, it's been way too long since an update. But luckily, that's because Max has been doing outstanding. He loves kindergarden, and he's making a lot of friends. It just warms my heart to see his classmates take to him so much. I always worry that I'm the only one that sees how sweet he is, but apparently it's obvious to everyone. Max's teachers just love him.

And what's also great this year is we have all three children at the same school. Amanda does the morning announcements, and Max's teacher says he makes sure every one in his class is quiet so they can hear his sister. And Andrew always makes sure Max makes it to class in the morning my going to his class with him. Max's teacher jokes that Andrew is their tallest kindergartner!!

Also, Kelly and I are getting married in a couple of weeks (Nov, 11th)!! You have to see Amanda in her Maid of Honor dress!! She looks sooooo grown up (too grown up!! haha) Also, Max, Andrew and I are going to wear matching tuxes. We all can't wait!!

Unfortunately not all is well with the rest of the Forand family. My nephew, Morgan, is blind. My sister found out a few weeks ago, and the doctors feel it was caused by a lack of blood flow to his optic nerve at some point. With the other problems he has had (in past journals I've wrote about Morgan's kidney problems). Obviously this was devestating to my sister, but we have to do our best to help them through this. I still feel Morgan will be very happy and talented and successful. Hopefully all we've gone through with Max will help with dealing with what lies ahead with Morgan. as far as he's concerned, he certainly seems happy. I have no problem making him laugh when I play with him. So I'm sure in the end, just like with the Max, Morgan will shine through all the adversity!! I'll add some pics from Halloween and of Morgan.

Take care!! Paul & Max

Tuesday, October 11, 2005 10:29 PM CDT

I am so sorry about not keeping up with the updates. Kelly and I are getting married in a month -- or as Max says WE'RE ALL getting married in a month -- so it's been busy over here. Max is doing awesome! He had strep throat last week, but that certainly didn't slow him down. He has been doing awesome in school too -- his teachers just adore him. I promise I will have a longer, better update soon. In the meantime, know that Max is doing GREAT and he appreciates all the support!!

Saturday, August 27, 2005 2:18 PM CDT

I have no good excuse for not updating sooner, so I won’t bore you with a bad one! From now on, I think I’m going to update monthly unless there is anything major to report. Max starts kindergarten in two weeks – he is excited to go to the same school as Amanda and Andrew. I’m really proud of how he’s been doing.

His latest Audiologist appointment showed no change in his hearing – which is good news. One of his hearing aids is not working properly, so we have to get that fixed. He also had an ultrasound recently – we haven’t gotten the official results back yet, but the technician said everything looked normal to her.

Max had one bad ear infection this summer, but besides that his health has been good. Weekly home infusions are a way of life now and Tina is part of the family.

Max is gearing up for football season! Go Eagles! I promise I will post new pictures soon – hopefully after the first day of school.

Thanks to everyone who still checks in!

Saturday, July 2, 2005 1:47 PM CDT

I've been meaning to update for weeks. Baseball/T-ball/Softball season ended recently and of course, the end of the school year. Needless to say, it's been busy. Max, Amanda and Andrew all had a great season. Amanda's softball team went to the Championships, but lost in a very exciting best of three series. Andrew was picked for the league's 8 year old All-Star team. And Max had a great "rookie" year with both his hitting and fielding skills. I was asked to coach the 7 year old All Star team that my nephew Josh is on, so my season isn't over until next week.

Max is doing great. He had some fluid draining from his ear this week, so he had an ear infection. He has his annual GI appointment next Tuesday. Two weeks ago, he had a Cardiology appointment that went well. He had an echo done that showed no real change from his last one. He still has thickened valves and mitral valve regurge, but it is not any worse than last year.

Infusions are going well. I have actually accessed Max a few times with Tina's help and supervision. I still can't say enough about how great Tina is.

Max has loved going in the pool so far this summer. Last year, he would only hang out on the steps, but this year he swims around the whole pool with the aid of his trusty life vest. He even jumps into the pool from the side or from the steps. We've been to the beach once so far this season too. Max had a blast jumping over the waves and running back and forth getting water for the huge hole we dug in the sand.

I hope everyone is having a safe and happy summer. And Happy 4th of July!!!!

Friday, May 20, 2005 10:54 PM CDT

Another long-overdue update!! Max has been doing GREAT! He does not need his other carpel tunnel release surgery and he doesn't have to have his other tonsil removed at this time. His genetic doctor thinks he looks awesome. All of his latest doctor appointments have been encouraging.

During his last Ortho appointment, he had x-rays done and the doctor did point out some things that were typical MPS traits -- like his broad ribs, for example. But there were no indications of anything problematic at this time, and that was such a relief to hear.

For his home infusion yesterday, we decided to take a "show and tell" trip to his school so his classmates could see just what he does every Thursday. I explained it to the kids this way -- We are all made of a lot of different parts. Max is missing this one tiny part -- so he gets medicine every week to put that part back into him. All the kids seemed pretty interested and his teachers were just great (as they always are.) I thought it was important for the other kids to see and know what his infusion is all about. I went on a field trip to the zoo this week with his class and it seems that he is one of the more popular kids. I dread the day when he gets made fun of because of this disease. I think if his classmates are exposed to him dealing with MPS when they are this young, they will always see it as just something that is part of Max and not something that makes him "different."

I can't tell you how proud I am of Max with T-ball! He CRUSHES the ball when he's up to bat and he usually doesn't need the T. He gets bored in the field sometimes, but for the most part he loves going to and playing in his games. Amanda has been doing great in softball as well! Two weeks ago, she got her first hit in the ninth inning of a come-from-behind game and then went on to cross home plate as the winning run! Best of all, she is having a lot of fun.

Check out the new pictures. I know I have to check in with our other MPS friends! I really appreciate every guestbook entry -- I know Max will appreciate all of them too when he reads them one day. So keep 'em coming!

Congrats to Jimmy and Christine on their new baby boy -- Morgan Frances Harris. He was born last Monday but is still in the hospital. I just want to say that we are here for guys for whatever you may need and we are thinking of you constantly.

Paul

Saturday, April 23, 2005 3:54 PM CDT

Sorry for the lateness in updating!! Max and Andrew both had a great birthday. Their party was a little chaotic, but everyone had fun. The weather was awesome. The kids ended up having a water gun fight near the end -- so Max and a couple of his cousins ended up taking their shirts off. Then Max jumped on his tracktor -- so I had to get a picture of that.

Max's strep has cleared up and he's off antibiotics. He will have to have his tonsil removed again -- Kim and I are going to see if they can do it at the same time he gets the carpel tunnel release on his other hand, which is scheduled in June.

I'll be putting up new pictures of the kids playing T-ball/baseball/softball soon, so check back for those in a week or two.

Monday, April 11, 2005 8:16 AM CDT

***UPDATE
Max came home from the hospital and is doing a little better. Specail thanks to Kim for staying with him last night!

Good news first...My sister has been doing pretty well. There is less fluid in the baby's abdomen and for the first time her doctor told her that it could mean nothing. They originally suspected Down's Syndrome, but the chromosome test came back normal. In fact, all tests they've run on the baby have come back normal. Her doctor still thinks she will deliver early. But hopefully, the baby will be okay.

Now the bad news...Max is in the hospital. Kim and I took him to the ER on Saturday night -- his fever spiked and he was complaining that his shoulder hurt. We were worried his port might be infected. But they couldn't find anything and sent us home. We took Max to the pediatrician yesterday for follow-up and he told us that Max looked like he had an absessed tonsil and sent us to Dupont. Once there, Max was diagnosed with strep throat and they kept him overnight. I talked to Kim this morning (she stayed with him last night; it'll be my turn tonight) and she said that Max needed oxygen last night because his pulse ox was low. I am exhausted -- didn't get home until pretty late last night. But I'll keep everyone posted.

Wednesday, March 23, 2005 9:33 AM CST

Max has been doing great!! As Kim mentioned in the guestbook, his parent/teacher conference was really positive. The self-portrait he drew in the beginning of the year was nothing but scribble. The one he drew recently had a head, arms and legs – it looked almost like a stick figure. It was really interesting to see the difference – not to mention the fact that it made both Kim and I ecstatic to see how well he is progressing in school. He has also become quite the ladies man! There are two little girls in his class whom he gets along with really well – he tells me he has two girlfriends! I had all the kids make cards for Kelly’s birthday over the weekend and Max wanted to make a card for his “girlfriends” that said “I love Kali and Erin. Love Max.” (He had Andrew write it for him.)

I am so excited about Max playing t-ball and Amanda playing softball. I’ve wanted Amanda to play softball for the last couple of years – she hasn’t wanted to because she thinks she can’t catch. She is a great hitter though. I think she’ll do great. As for Max, he has me pitching to him for hours in the spring and summertime. I think he’ll do better with t-ball than he did with soccer – there are no outs, everyone gets to bat and you can only advance one base at a time. So everyone “scores” too. He is also going to be helping me coach Andrew’s baseball team.

I’d like to ask everyone to send prayers out to my sister. She is seven months pregnant and started having contractions this week. Her doctor sent her up to Our Lady of Lourdes hospital – they discovered the baby has fluid in his abdomen. They told her this could mean a lot of things – most of which do not sound very optimistic. So please, say a prayer or two or ten for her and the baby – they know it’s a boy. The eerie thing is, Max was diagnosed two years ago this week – I asked my sister, “What is it with us and this time of year?”

Thanks to everyone who keeps checking in. I’m going to be posting new pictures soon so come back and check them out in the next week or two.

Paul

Tuesday, March 22, 2005 6:50 AM CST

Paul and I went to Max's Parent teacher conference last week. His teachers are very impressed with his development. They feel he is doing great. He is definately ready for Kindergarden next year. Paul and I were also very impressed. We know he is an amazing child, but I just can not find the words to express my pride in him. They showed a self portrait that he drew in the beginning of the year and one he drew recently, what an amazing difference. I can say I floated out of the conference I was so happy for Max and could not have been any happier. It is always so thrilling to hear someone talk about how well your child is doing. I don't mean to brag but I am THRILLED and so very, very proud of him. Amanda and Max are both taking swimming lessons and doing very well. Amanda is learning the proper strokes so if she wants to join the swim team later she can. Maxwell is learning to swim. I had to go in the pool with him for the first two lessons. This week he went in all by himself with his teacher. I can't wait, he will be willing to go in a pool this summer and not just sit on the steps. I am signing Amanda up for Softball this week and I am trying to sign Max up for T-Ball. I think it will be good for him to try since he likes hitting the ball so much. Wish us luck. Hopefully it will go better than Soccer. Try everything once and if it does not work out then we will try something different next time. I have gone on enough, I hope everyone is doing well. I am only on the computer at work and do not get to post or check into other sites often but I appreciate everyone's support and do think of you often. Thanks again.

Kim Forand

Tuesday, March 22, 2005 6:50 AM CST

Paul and I went to Max's Parent teacher conference last week. His teachers are very impressed with his development. They feel he is doing great. He is definately ready for Kindergarden next year. Paul and I were also very impressed. We know he is an amazing child, but I just can not find the words to express my pride in him. They showed a self portrait that he drew in the beginning of the year and one he drew recently, what an amazing difference. I can say I floated out of the conference I was so happy for Max and could not have been any happier. It is always so thrilling to hear someone talk about how well your child is doing. I don't mean to brag but I am THRILLED and so very, very proud of him. Amanda and Max are both taking swimming lessons and doing very well. Amanda is learning the proper strokes so if she wants to join the swim team later she can. Maxwell is learning to swim. I had to go in the pool with him for the first two lessons. This week he went in all by himself with his teacher. I can't wait, he will be willing to go in a pool this summer and not just sit on the steps. I am signing Amanda up for Softball this week and I am trying to sign Max up for T-Ball. I think it will be good for him to try since he likes hitting the ball so much. Wish us luck. Hopefully it will go better than Soccer. Try everything once and if it does not work out then we will try something different next time. I have gone on enough, I hope everyone is doing well. I am only on the computer at work and do not get to post or check into other sites often but I appreciate everyone's support and do think of you often. Thanks again.

Kim Forand

Sunday, March 6, 2005 11:46 PM CST

I know an update has been long overdue and I apologize for slacking off! About two weeks ago, I had a long entry all ready to add and it disappeared. I went away on a week long business trip a couple of days later, got back and now here I am ready to try again.

Max has been doing great. Everyone has been raving about how tall he is getting lately. I'm sure most of you know that almost all MPS sufferers tend to be short. Well, not Max. He is a good half a foot taller than his OLDER cousin Tristen. Almost everyone who meets him and asks his age comments on how big he is.

He has also wanted to do everything for himself lately -- including taking off his clothes and getting himself dressed. He still struggles a bit with the dressing/undressing, but he is always determined. Stubborn might be a better word. It may take him ten whole minutes to get his clothes off at bathtime, but he'll be damned if anyone is going to help him!

Other than that, there's really nothing new to report. Home infusions are now routine. Winter is almost over and Max made it through without any major bout of sickness.

He'll be turning five in a little over a month! We still aren't sure what to do about a party. He says he wants to have it at Aunt Tine's, like last year.

Amanda had her TENTH birthday on Tuesday! She had a sleepover last night with five girls. I think I ended up just as exhausted as she was today. I learned that if you get six girls together in a home, it's an unexplainable force of nature that they are all going to scream for the better part of the night. And when they're done screaming and you think you can safely nod off to sleep, they will wake you, one by one, at odd hours of the morning to ask you the most rediculous questions you've ever heard at 3 AM. Such as: "Can I have a Capri Sun?" or "Have you seen Melina's slippers?" Anyway, HAPPY BIRTHDAY AMANDA! I love you Baby!

Monday, February 7, 2005 11:00 AM CST

Max has been doing well. Home infusions are now a routine – going off without a hitch for the most part. There is nothing new on the major medical front, which is always a good thing.

Max did throw up in the middle of the night on Friday night. I brought him into bed with me in case he threw up again. (He didn’t.) I’m not sure if it was something he ate or a stomach virus that’s been going around. My mom had it last week. But Max was fine the next day.

Max was very sad about the Eagles losing the Super Bowl! He wanted to wear his Eagles jersey to school again today. He wore it last Friday too. We went to my sisters to watch the game. Max dressed up in his cousin Tristen’s Spider Man outfit (complete with muscles and all.) I would have taken a picture but didn’t have my camera. When one of his other cousins aimed a toy gun at him he said, “You can’t shoot me, I’m Spider Man.”

I almost forgot – Max has now been wearing underwear to bed instead of a pull-up. His pull-up has been dry in the morning for the last month, so I decided to try putting underwear on him overnight. Max seemed to like the idea. And he hasn’t had one accident yet! Way to go Max!

Saturday, January 29, 2005 1:41 PM CST

Hello Everyone,

Max's latest infusion went well, as usual. Tina did have to poke him twice to access him, but he didn't seem to mind. He still talks her ear off all day long. "What are you doing?" "Why are you doing that?" "Why?" Questions, questions, all day long! Tina does not seem to mind his talkativeness.

Max gets very excited on Wednesday nights when he knows Tina will be coming the next day. He had a movie all picked out to watch with Tina before he went to bed. He picked out the movie "Good Boy" which he had watched about ten times already and said "I want to watch this tommorrow, Tina hasn't seen it yet." I thought that was pretty funny.

Max's finger is almost healed. We had to reschedule the follow-up with his Orthopedic doctor, but I'll keep everyone posted on how that goes. I'm still a little worried about Max losing feeling in tip of the finger he broke -- especially since he doesn't have a lot of strength in his fingers anyway.

Amanda and Andrew have been well also. Amanda is singing in the upcoming talent show -- she is singing the Martina McBride song "Wild Angels" with her friend, Miranda. A country song was not Amanda's first choice, but that's the theme of the talent show. Avril Levigne is more Amanda's taste! And Andrew has been scoring up a storm on his basketball team. I coach along with my brother and of course, my assistant, Maxwell. Max has a jersey and a whistle and loves helping. He really looks up to Andrew. I'll have to post a picture of the two of them in their jerserys.

Thanks to everyone who keep checking in!

Thursday, January 20, 2005 7:49 PM CST

Max had a rough day today. He was scheduled to have an EMG at Dupont and was going to get his infusion afterwards while he was there. He couldn't be sedated for the EMG because he'd had breakfast this morning. As a result, he was screaming through-out the whole thing. Then the pharmacy made a mistake while mixing his Aldurazyme, so he couldn't get his infusion.

Last week Max had a Neurology appointment. That went well. All of his reflexes looked good. He was doing karate moves on me during the appointment, so he said his fine motor skills look good too. His MRI showed an improvement from last year. The Neurologist wants to see him again after he starts Kindergarten.

Everything is still going well with the home infusions. I can't express enough how happy Max and I are with Tina, his visiting nurse.

Max has been pretty congested the last week or so. Actually, all three of the kids have had a minor cold this week. Kelly was pretty sick this week too.

It's supposed to snow this weekend -- possibly up to a foot. Hopefully it won't affect the Eagles playoff game this Sunday. Max says that Michael Vick is still having nightmares about the hit that Brian Dawkins put on him the last time they played!! Ha ha. Talk to everyone soon.

Paul

Sunday, January 9, 2005 1:00 PM CST

Max's finger is healing nicely. His orthopedic doctor said that he probably won't lose his fingernail. He has to wear his splint for another two weeks. I was worried because his broken finger is on the hand he had his surgery on. He already doesn't have a lot of strength in that hand.

I met with the child study team at Max's school on Friday about haivng him classified. They wanted to classify Max in December of 2003 and their biggest road block has been my resistance. I've read and heard some scary things about having a child classified, but after talking to several other parents of classified students, I've realized that it will only benefit Max to go this route in school. The child study team laid out a lot of these benefits for me as well. For example, Max will have a Psych evaluation every year. His attendance won't be counted. And if he is ever out of school for a length of time, even if it as short as one week, a teacher can be sent to the home for him. Plus all of his therapies (OT, PT and ST) will be more structured and streamlined.

I've always wanted Max in a regular classroom and I guess I was resistant because I thought classifing Max gave the school the power to put him wherever they wanted. But it's actually cheaper for the school to keep Max in a regular classroom. (The child study team assured me that money isn't a factor, but I know it is.)And right now, he is developmentally able to be in a regular classroom. Hopefully that will always be the case.

I hope everyone is doing well. I'm trying to get in the habit of updating more often, so please let me know if I'm slipping!!

Friday, December 31, 2004 11:52 AM CST

It's hard to believe that Christmas is over already and a new year is only hours away. Don't we say that every year? The kids started getting up at 6am on Christmas morning. We held them off until 7:30 to open all the presents. In the middle of opening everything, Max turned to me and said with classic Max enthusiam, "This is the best Christmas EVER!" The house is still a mess from all the toys.

Max's latest infusion on Thursday went off without a hitch. Amanda painted a picture for our home nurse Tina (Amanda bought herself an eisle and paint set with Christmas money.) Max has been doing really well health wise. No major sickness yet this winter. At his lastest appointment, Pulmonolgy said that Max is still doing really well but they still want him to use the pulse ox at night.

I am going to update the pictures tonight, so check back to check them out. We are all off to the movies now to see Fat Albert. Everyone have a Happy New Year. Please remember to think about all the MPS children and families. Talk to everyone in 2005!!!

P.S. I want to say a special thank you to Kelly, who over the holidays has agreed to become my wife!! I could not have gotten through every thing over the last couple of years without her. She and Andrew have been great to Max and Amanda. I'm very excited about the future!!

***LATER TODAY
Just got back from the hospital with Max. We went bowling today, Max tripped and the bowling ball fell right on his hand. He broke one of his fingers. The X-ray showed that the tip of bone on his middle finger was seperated from the rest of the finger. Max said he doesn't want to go bowling anymore! It was bleeding pretty bad, but thankfully, he didn't need stitches -- just a splint. He was in good spirits by the time we left the ER. What would a holiday be without an injury?!

Friday, December 17, 2004 8:49 AM CST

Home infusion number two went smoothly yesterday. Nurse Tina left by about 2 pm! It’s so funny to listen to Max talk Tina’s ear off. I think he is still getting used to having his medicine done at home. Everything Tina does, Max will ask, “What are you doing?” And then when she answers, he follows up with an inevitable “Why?” Kelly stopped home for lunch and as soon as she walked in the door he said “Guess what? The needle didn’t hurt me!” He was very excited about that. He watched Peter Pan and fought taking a nap despite being obviously tired. He finally fell asleep on the couch and slept a good bit.

Max’s ear infection has finally cleared up. And the best part of how he has been doing lately – he is perfectly silent at night when he sleeps! No more snoring or heavy breathing. It’s funny how odd it is to not hear him snoring in the next room -- almost like it’s TOO quiet. Kelly and I go in to check on him and we are amazed. I think Andrew might snore louder than he does at this point.

I took Max for his follow-up ENT appointment this week and the doctor said that everything looks great. He said it’s not unheard of for adenoids to grow back a second time but for them to grow back a third time would be very unusual. So we’ll see.

The kids are so excited about Christmas (of course.) Kelly and I have been slightly stressing. We have most of our shopping done, but we’ve had a couple of home disasters this past month. Our heater stopped working at midnight on a Sunday night and we had to have that replaced. We also had to get a new computer because our old one crashed. And then just last night, part of our basement flooded. We have the plumber coming over today. But it’s Christmastime, the kids are happy and that keeps us sane. Last night after we put the kids to bed, we heard Max and Andrew talking in the next room. Andrew whispered across the room, “Goodnight Max, I love you.” And Max whispered back, “I love you too Andrew.” Then Andrew said “Go to sleep Bubby.” And Max went “Okay.” It was the cutest thing.

New pictures will be coming soon. Talk to everyone later!

Thursday, December 2, 2004 3:00 PM CST

Hello!!

Wow, you guys must hate me!! The hard-drive on our home computer fried awhile ago, and we've also been very busy. But a lot has happened since Max started school!!

First of all, Max is doing wonderful in school. His teacher, Miss Brady, just loves him. He is doing everything that the rest of the class can do, it just takes him a little longer with some things. He's also pretty shy when it comes to singing songs and dancing with the class. If they only saw him at home!! He sings and dances all the time with Amanda and Andrew.

Amanda and Andrew are also doing great in school. Andrew got all E's, and his teacher said he is very calm in class and nice to the other children (if only he knew how hyper he is the rest of the day!!). and Amanda's teacher was just raving about her. She got all A's and B's. Her regular teacher is out on maternity leave, so she has a long term substitute. She said Amanda is doing GREAT so far this year!!

As far as medical stuff, Max had his Adenoids taken out a few weeks ago for the second time. Everything went fine and his breathing seems like it is a little better. But he is still pretty noisy when he sleeps. He's also have a nasty infection in his left ear for quite awhile now. They did a coulture and found it to be some sort of fungus. So he has different drops than usual and he can't wear his left "Magic Ear".

But best of all, Max has started his home infusions today!! His nurse, Tina is very nice and Max just loves her. Max was a little hesitant to be accessed at first, but after that everything went great. The pump that infuses his medicine can be put in a case that he can carry on his shoulder!!! Max thought that was so cool!! And he got to watch his movies and play with his toys in his own house!! I was so great not to have to drive over an hour to Du Pont, but we will miss everyone at Day Medicine. We will be sure to stop by and visit them when we go back to DuPont for appointments.

Hopefully I'll be able to update everyone more ofter. I also have to stop by the MPS Forum and say hi to everyone. We also want to say hi to Austin, Allie, Jacob and Sammie, Andrew H, Aaron, the Bennett's, Zachey, and all the MPS children out there. Talk to eveyone again real soon.

Paul and Max

Thursday, September 16, 2004 4:38 PM CDT

Check out Max and Tristan on the first day of school!!!

Max has been making out really well with his new school – he calls it “big school, Holly Heights.” His teacher is very personable and seems very interested and eager to learn about MPS. He loves being in the same school as his cousin Tristan, even though they aren’t in the same class.

We got the sleep study result back and it was all good news. Max also had an ophthalmology appointment this week, which showed no change from last year. We just have to make sure that he wears sunglasses when it’s sunny outside.

Max has had a rough time with soccer the last two weeks. During practice one day, he tripped and his shoe came off, so he didn’t want to play anymore that day. He wasn’t hurt, just embarrassed I think. Then during the first game, he was on the field and all the other teams’ parents started cheering (VERY loudly) and it really startled him. He started crying and again didn’t want to play anymore. He seems to like going to the games and practices and when I ask him if he likes to play, he says yes. I think it’s just his way to be cautious about things and ease into it at his own pace. Kim suggested not bringing him anymore on her days. But I think it’s really good for him to feel like he’s part of a team even if he isn’t playing all the time. He never says that he doesn’t want to go. So I’m still going to take him regardless of how much he plays. I think it’d be worse for me to tell him he can’t go anymore.

I hope everyone is enjoying the start of the football season!!!! Andrew’s first football game is this Sunday, so I think we’ll be having a little get-together after the game. Max loves going to Andrew’s practices. Amanda likes trying on his pads and helmet – it’s pretty funny. Let’s hope it doesn’t rain too hard this weekend so we can get he game in.

Paul

Thursday, September 16, 2004 4:35 PM CDT

Wednesday, September 8, 2004 8:59 AM CDT

Maxwell, Amanda and I went to DuPont yesterday to see ENT and Pulmonology. Everything went really well.
I talked to ENT about the frequent nasal drainage and possible post nasal drip. Everytime Maxwell is sick
and we go to the doctors they say his lungs are clear, it is just upper airway congestion. I know cronic nasal
drainage is part of MPS but I feel that we should be able to manage it better. I explained this to the ENT and
he suggested that we try nasal steroids (Nasonex) for now. It has to be long term, used every day. We will
go back in one month to be evaluated. Maxwell also had an X-ray of his neck to check on his Adnoids. Max
and Amanda had their Adnoids and Tonsils removed December 2003. Guess what....they are growing back.
We have some regrowth of the Adnoids and one tonsil. We were watching for that since we knew Amanda's
had grown back. The doctor does not want to remove them at this time we will try the Nasonex first and possible
Antibiotics over an extended period time. Then we went to Pulmonology. Still no results from the Neurological
Sleep Study completed on 8/3/04. Overall she is happy with the progress we are making and she thinks he
looks great. We will keep the Pulse Oxygen Monitor for now. She felt it would be a good thing to have over
the winter as long as my insurance will allow us to keep it. I am always in disbelief over the way insurance
companies work. I feel my company is excellent (most of the time), but I do not always feel they have the best
interest of the patient in mind. If a Doctor orders it then is should be. Not if they find it medically necessary then

you may be allowed to have it. Sorry still waiting for Max's new hand splints and apparently getting impatient.
We to have a molds made to have custom fitted splints on 8/23 so Max's splints fit better and we are still waiting
for authorization from the insurance company. Max picked out a space ship print that he calls "Up to the moon!"
with red straps. We are very excited to get these! Paul will definately have to put a picture of these new splints
when we get them. They should be really cool.
Thanks for checking in on us!

Kim, Max and Amanda Forand

Friday, September 3, 2004 8:04 PM CDT

Hello Everyone,

We had a great vacation. Hectic, but still fun. We went to Dorney Park and Wildwater Kingdom for two days. Max's favorite part was staying in a hotel! All week before we went, he kept asking "We go to the hotel now?" When we finally got there, he was bouncing off the walls. All the kids were. We went with my brother Matt and his three kids, so there six kids in all. They had such a good time.

The first day we went to the water park. Max loved the wave pool and jumping over the waves with his cousin Conner. He was hesitant to go down any of the slides in the kiddie areas, but he finally got into it. He really liked splashing around in all the little pools. And the bigger kids must have tried every water slide. Everyone was exhausted by the time we got back to the hotel (thank god!)

The next day we rode all the rides in the regular park. Max did really well with riding all the rides. (We'd taken him down to the boardwalk a couple of times this summer and he didn't want to go on anything, so I was a little worried he wouldn't ride anything.) But he went on almost everything he was tall enough to go on. He was so cute -- he rode the kiddie swings and said, "I'm having fun on the swings!" There were only two rides that made him cry -- when he got off of them he said "That too scary for me." The one ride that made him cry was a a Snoopy school bus that raised you in the air about ten feet and then dropped you down -- almost like a very mini free-fall type thing. After Max rode it he said "I don't like up and down." Later he would tell eveyone that he rode on the rides, but "not up and down. Too scary."

Amanda rode the biggest roller coaster in the park, called Steel Force, and an upside down roller coaster called The Lazer! I was so proud of her -- at first she didn't want to go on them, but she gave in after her cousin Jonathan told her that it was really fun and not scary at all. She went on the Steel Force roller coaster four times and had her hands in the air during the drops. She even convinced Kelly to ride it.

We also got one of those black and white pictures taken where you dress up in western or thirties era clothes. I thought it would be cool to have us all dress up old time gangster style. We snuck a couple of pictures with our camera too. Max went up to everyone in his little gangster suit and hat and said "Look! I'm dressed up!"

So we all had a good time. I got a flat tire while we were there, and got no sleep the first night there because Max was snoring so loud. But it was great to see the kids so happy.

Now on to the medical stuff. Max had a genetics appointment this past Thursday. It was Dr. Arch's idea to have this appointment -- she sees him every week for a few minutes during his infusion and wanted a chance to sit down and really examine him thoroughly. She thinks he's doing great!! She said that his MRI is better than last year. She notices that his speech and verbal ability keep improving. It was a very posative appointment. His infusions have been going very good -- she is going to start looking into doing the infusions at home!! She doesn't anticipate it being a problem since it's cheaper for the insurance to pay a home health aid than to pay for a day in the day medicine unit.

I know this has been a long update -- there's only one more thing I want to add. Max had his very first soccer practice tonight and he did amazing!! He kept up with all the other kids and did all the drills perfectly. He seemed to hold back a little bit when they had a practice game, but maybe he just needs to build his confidence up. I was so proud of him though -- my little soccer player!!

Paul

Tuesday, August 10, 2004 12:23 AM CDT

Hello Everyone!

We took the kids and their cousins canoeing over the weekend, which they all enjoyed. All except for Max!! He was fine when we were out on the water, but as soon as we got back to the dock, he climbed out of the canoe and said "I did NOT have fun." I think he was a little scared. While we were out on the water, he was calling everyone's name and waving and saying hello. "Hi Grandmom. Hi Grandmom. Grandmom!! HI!!" He wouldn't stop until you waved and said hello back. We had three canoes and eight people between us, so he had plenty of people to say hello to! But as soon as he got back on land, "I did NOT have fun." Later in the day he said to my Dad all excited "Pop-Pop, we went on the boat!" Then he added "I didn't have fun." I thought that was hilarious! I'll post more pictures tonight of our adventure.

So Max continues to do well. We are planning our vacation in a couple of weeks. We were originally going to go North Carolina for Dr. Muenzer's MPS family day, and then make our way back stopping in Virginia for the week. But we heard that Dr. Muenzer might not be having his family day because of lack of interest. So I think we are going to make our rounds at the local amusement parks. We're going to Dutch Wonderland one day. Then we're going to Six Flags to visit the safari and water park. We also might go to the Rennaissance Fair and might try to go to the Poconoes for a couple of days. The kids seem a lot more excited about the amusment park vacation than they did about Virginia!!

Eveyone please keep Jessica and Kaity Wellman in your thoughts this week. Jessica is mother to Kaity, a 13 year old girl with MPS-1. Kaity was going to have a bone marrow transplant when she was younger, but a matched donor was never found for her. Jessica is also the administrator of the MPS Forum and she's such an inspiration to ALL MPS parents, myself included. Sadly, Kaity became an Angel this Monday afternoon. Please stop by her site.

www.caringbridge.org/in/kaitlynn

Paul and Max

Thursday, August 5, 2004 8:19 PM CDT

Max had a busy week. He had his sleep study on Tuesday night and had his infusion today. Kim took him for the sleep study and said that it went fine -- he didn't alarm all night. Hopefully, the results will show an improvement over last time. The infusion went well too.

He's gotten over whatever virus he had. Kim and I want to get a cat scan of his sinus cavity to see if he has chronic sinusitus. His pediatrician doesn't believe it's possible to have sinusitis at his age, but the people at Dupont said they see it all the time, even in kids who are younger that Max.

I've signed Max up for soccer! His cousin Triten plays and Max has been saying he wants to play. Kim and I were hestitant at first -- we're worried about him being "ready" to play and also worry about him running around so much. But he runs around like a nut anyway, and besides, the field the kids play on can't be more than thirty yards long. I don't want to deny him if he wants to play. And being a part of team will probably be really good for his self-confidence. So we'll see how he does in the first few practices.

Thanks to eveyone who keep checking in!

Tuesday, July 27, 2004 9:57 PM CDT

Hey Everyone,

Max has been a little under the weather the last week or so. He did not get his infusion last Thursday -- he had a fever. He was at DuPont for an audiologist appointment that day, so he got some IV antibiotics while he was there.

He's been sounding really "junky" this past week, so he finally got a chest x-ray today, which was (thankfully) negative. I actually made him use his oxygen the other night -- when I hooked him up to the pulse ox at bedtime, he was at 89 - 90% -- and he was wide awake! His next sleep study is coming up within the next month.

From reading the MPS forum, it seems that a few of our MPS friends are suffering from colds lately as well! I think I've caught one too -- I've had a slight fever and have been feeling achy all over the last few days. When I told Max that I didn't feel well, he said "I will make you better." Even sick, he's still sweet as can be!!

On another note, Max was complaining this weekend that his forehead hurt. This kind-of freaked me out -- I've always been worried about hydrocephalous. I've read a lot about it and talked to some other parents about their experiences with it. Headaches are a common and often overlooked symptom. Max has never before complained that his head hurt. So I will bring this up to Dr. Arch when I take him for his infusion this week.

On an Amanda note -- she is school shopping already! She went through ALL the store circulars and circled all the school supplies that she wanted. So my Mom took her out this past weekend in search of the stuff she circled!! (Thank you Mom!)There were two snafu's -- she was not able to find erasable pens, and everyone knows that when you get to fourth grade you're allowed to use erasbale pens! So she circled a CVS ad with the pens and asked me "Are you going to CVS anytime soon? Could you pick these up for me if you go?" The next thing was the scissors -- apparently she (mistakenly) bought scissors that only cut through construction paper and not through regular paper. Well, she can't be caught dead with scissors that she is obviously too old and sophisticated for!!

I promise -- new pictures coming soon! Thanks to everyone who continues to check in.

Paul and Max

Tuesday, July 20, 2004 12:35 AM CDT

Hello Everyone!!

I guess I had better update since I'm getting comments from Power Rangers now! Max is doing pretty well. He will be having his yearly MRI in a few weeks and his neurological sleep study as well. We also told Dr. Arch about a new treatment that may allow the enzyme into his brain. We read about it on Ryan Dant's website (Link below). If you don't know, the enzyme treatment (Aldurazyme) that Max receives every week does not pass the blood/brain barrier. Well, Dr. Kakkis at UCLA has been testing putting a tiny amount of Aldurazyme into the spinal fluid twice a year. They are seeing a decrease in storage material in the brain. So although we are not sure if this disease is affecting Max nuerologically, this is obviously exciting news.

Also, Max's infusions are going very well. He's had his dosage increased several times becasue he is growing like crazy!! He also doesn't even flinch when they access his port now. He's such a brave, BIG BOY!! He still usses the Pulse/Ox machine at night, but very rarely needs the oxygen. His speech is still behind, but his personallity is way AHEAD!!

The kids summer is going very well. We've been down to the boardwalk a bunch of times. We are going to try and go canoeing this weekend. Max still goes to Jack & Jill while Amanda and Andrew go to Bybell's Daycamp. Their cousins are there and their Aunt Tiffany is a teacher there.

Hopefully I'll have more news next time. I'm also going to try to take a lot of pictures this weekend to put more on here. But let me know if you want the home page picture changed! I think it's adorable. Until next time, Max says NINJA STORM, RANGER FORM, YEAH!!!!

Max & Paul

Friday, July 9, 2004 2:22 PM CDT

Hey Eveyone!!

I know I haven't updated in a while. The summer has been keeping us busy. And Max has been doing great! He went to Niagra Falls last weekend on vacation with Kim and Amanda. They went on a helicopter ride, which Max seemed very excited about.

Infusions have been going well. We are still working hard to get Max potty trained. He is doing much better with going on the potty, but he is not yet one hundred percent trained.

I'm still working to post new pictures. I'll probably take some pictures this weekend -- the weather is supposed to be beautiful (and hot) so we might go to the beach. Thanks to eveyone who keeps checking in.

Friday, June 18, 2004 3:05 PM CDT

Max's infusion went well yesterday. He's been getting infusions for a whole year now. (His first was on June 20th, 2003.) Happy "anniversary" Max!!!!

Dr. Arch did an extensive physical exam on him. She said that he looks great. He had an ear infection this week. He also developed a rash on his arms and legs that none of the doctors seemed to be able to identify. He's doing better now though.

We're going to the Phillies game for Father's Day. Everyone is excited. I'll post new pictures soon. Until then, thanks to everyone who continually check in on Max. I'm going to make a scrap book someday of all the postings from the guestbook.

Paul

Thursday, June 3, 2004 11:29 PM CDT

Hey Everyone,

I know I've been slow to update -- sorry about that! I've been pretty busy lately, plus there hasn't been anything new going on with Max in the past couple of weeks.

He had his infusion today -- that was fine. As soon as I got home, Max felt warm. I took his temp and it was over 102. We went right to the doctor (who thankfully had late hours tonight) and Max has strep throat. I'm slightly annoyed that we were in the hospital all day and no one noticed he was sick. He had his temperature taken many times and his pulse ox dipped when he was sleeping while we were there. They told me that all the thermometers had recently been "callibrated" and that might explain the higher reading.

Nothing seems to stop Max. He was a little subdued tonight, but kept saying "I not sick no more. I better." He was playing with his cousin Tristen like nothing was wrong. But he was very tired by bedtime. I'll keep everyone updated on how he's doing. Until them, Max appreciates everyone who signs the guestbook and regularly checks in on him!!!

Paul

Wednesday, April 21, 2004 7:14 AM CDT

***NEW PICS ADDED 4/25***
Sorry again for all the lateness!! Max and Andrew's party was great. I'll put pics up soon. Big thanx to Christine and Jimmy for letting us have it at their house. They have a batting cage there and the kids loved it. I even had Max in there hitting some balls. And I couldn't believe Amanda. She hits like a demon!! Now she's saying she may want to play baseball with her cousin Jonathon instead of softball. We'll see.

Everything else with Max has been fine. We still haven't had to use the oxygen which is great. I guess that Zyrtec is a miracle drug!!

I'll keep everyone posted. Talk to ya soon!!

Friday, April 16, 2004 8:38 AM CDT

Just a quick update to way HAPPY BIRTHDAY MAX!!!!!!!!!!! I LOVE YOU!!!!!!!!!!!!

Talk to everyone soon.

Paul

Sunday, April 4, 2004 8:23 PM CDT

Wow, what a weekend!!

First the medical stuff. Believe it or not, Max has not had oxygen yet. Thursday, Friday and last night, his pulse ox didn't dip below 90. Kim and I think it may be due to the Zyrtec clearing up the mucus in his throat. We'll see, but so far so good. I just don't understand how the sleep study could have been so bad, and now he's breathing fine.

Now for the fun stuff. First of all, the Phillies new stadium is amazing, even though it's not finished yet. Thanx a lot to Joe and Abigail for the tickets!! The kids loved it. Then we went over to Dave & Busters to meet Carolyn and Austin Caucci. Second of all, Carolyn is extremely cool. She was so nice and answered a lot of questions. She is a great mother. And Austin, let me tell you, is one of the most entertaining kids we've ever met. He is so much fun. He will talk to anybody, and even had our waiter cracking up at dinner -- he went right up to him and said "We need our check now." Also, he is quite the ladies man!! He was flirting with Amanda!! It was hilarious. It was great for Max to meet him. Max is much shyer than Austin, but he talked about him the rest of the weekend. During his bath tonight, he said "Can we see Austin again soon?" I really hope this is just the beginning. Max, Amanda and Andrew had a great time, I hope we'll be getting together again.

Max's birthday party will be coming up in a couple of weeks, so we are beginning to plan for that. Andrew's birthday is the day before Max's, so we'll have a Power Ranger/Sports birthday party. I hope you like the pictures from the weekend. I'll talk to ya soon.

Paul & Max Forand

Thursday, April 1, 2004 6:55 AM CST

Saturday Update:
Meeting Austin and Carolyn was amazing. I'll update more later -- it's been a long day. But I couldn't resist putting up this picture of Max and Austin. More to come...

Hi again!

I know, I really need to update more often. Kelly has been getting on me about that. If you read Kim's post, you know that ENT didn't find any obstuction that would cause Max to have breathing problems at night. We met with the pulmonologist, (Dr. Inselman I thing, I'm horrible with names), and she went over the first two sleep studies with us. The first one showed that Max's Oxygen saturation went down to 80 (it needs to be above 90-92) and his CO2 went up to 60 (I forget what normal CO2 is). There were few episodes of sleep apnea. So based on that study, she felt Max should have Oxygen at night.

The second study was much worse. His O2 went down to 80 and his CO2 went up to 63, but he had a lot of sleep apnea. He averaged 27 episodes of apnea per hour (this is when he stops breathing for at least 20 seconds!), and the longest episode was 72 SECONDS!! I couldn't believe that. When I started noticing his breathing problems, it seemed like he would stop for a few seconds, and this would freak me out!! Based on this study, she thought Max should wear a Bi-pap mask at night (this is a mask that goes over your nose and forces air into your nose). Needless to say, none of us feel like Max would enjoy that all too much.

So, what to do. The doctor examined Max and although she didn't know a lot about MPS children, she felt that his facial features are what are causing his breathing problems. She also noticed some mucous in his throat, so she prescribed Zyrtec, an allergy medicine. But we are going to put Max on Oxygen at night when he sleeps. He will also be hooked up to a Pulse/Ox moniter to measure the O2 saturation in his blood. Hopefully this will keep him above 90. He has a Nuerological Sleep Study scheduled for May 18th which should let us know if this all works. So everyone, keep your fingers crossed, pray, whatever you have to do, Max would appreciate it. If the oxygen alone doesn't work, he will have to go on the Bi-pap.

Well, other than all of that, Max is still being as sweet and cute as ever. His speech seems to be getting better everyday. He had an ear infection last week, so he got a break from wearing his hearing aids, but he's much better now. Amanda is doing great too. She is really into singing now. She is practicing all the songs from Cats, the musical. She headed for Broadway!! haha. And Andrew has been sick the past couple of days with a fever. That's the only thing that slows him down!! Hopefully he'll feel better by the weekend.

Speaking of weekend, we are going to the exhibition game at the new Phillies stadium, Citizen's Bank Park. This will be the first game ever at the stadium. And afterward we are meeting Carolyn and Austin Caucci. Austin has MPS-1 like Max, and he received a Stem Cell Transplant and is doing well. We're very excited to meet, I think it will be great for Max to meet another child that is dealing with the same thing he is. Check out their page at www.caringbridge.org/page/austinc . We'll problable meet at Dave & Busters if the weather isn't nice, which it looks like it's not going to be (it seems like it's been raining for a month straight). If it is nice, we are going down to Penn's landing on the river. So that will be exciting!!

Hope everyone has a good weekend. I'll let you know how the Oxygen works out.

Paul & Max Forand

Sunday, March 14, 2004 10:31 AM CST

Hi again!!

Max's infusion went great this week. His Grandmom came with him, so he was very excited about that. I talked to Dr. Arch about what she thinks of all the sleep stuff, and she says she's not too sure. She said the pulmonologist says there were signs of Central induced sleep apnea, which is the brain forgetting to breathe. This is very scary, but they feel it's due to the benedryl in his system from the infusion. I still feel he is having obstruction, either due to his Tonsils and Adenoids growing back, or just becasue he has a short neck (very common for MPS babies). He has an ENT appointment this week, so hopefully we'll know more. Oh, I changed the Hope page photo to my favorite Max pic. Some of you thought the other pic was sad, but Max actually thought it was hilarious!!

So, hopefully I'll have more to tell after the appointment this week. Until then, Max says GO POWER RANGERS!!!

Paul & Max

Saturday, February 28, 2004 6:11 AM CST

Hi everybody!

Okay, sit back becasue there is lots to tell. First of all, Max's infusions are going great. He hardly flinches anymore when they access his port. And he loves bringing movies to watch while the infusion is going on (his latest favorite seems to be Fairly Oddparents!! A nice break from the Power Rangers!) He also has not had any congestion lately, so that's good too.

As far as the second sleep study, I first have to rant a little bit. For the sleep study, they hook several things up to Max. These include sensors on his arms to measure how much he moves them, heart and breathing sensors, and a bunch of other things. Now, two sensors measure Oxygen stauration in the blood, and CO2 in the blood. When these readings go to certain levels (belor 90 for oxygen, above 60 for CO2), alarms go off. Well, when Max is sleeping and starts to have problems breathing, these alarms go off and startle him into breathing again. Now keep in mind, when the alarms go off no one rushes in to check on him. Thursday night, the CO2 alarm went off every minute or so for 20 minutes before anyone came in. So I feel we are not getting a true sleep study of what he does every night.

Now that I got that off my chest, wait until you hear this. The respitory doctor called Kim yesterday to say his Osygen staturation was worse for this sleep study compared to the last. She also said Max had more episodes of apnea, but feels is may be because he still had Benydryl in his system from his infusion. Now, she came down to see Max during his infusion when he was loaded with Benydryl, sleeping, and breathing fine. So, she would like a THIRD sleep study done on a day when he is not getting his infusion. She also wants him to see ENT to check if his tonsils and/of adenoids have grown back.

So, after all of this, it is my untrained opinion that something is obstructing Max from breathing when he is sleeping. I sat there and watched him most of the night (work on friday was tough) and when his Oxygen Sat would fall, I can see him trying to breath, but something was blocking it. So hopefully it is just that his adenoids have grown back. We'll see.

So, until next time, Max says Hi!!!!!!!!!!!!!!

Paul

Tuesday, February 10, 2004 11:17 AM CST

Hi Everyone!!

Sorry I've been too busy to update. Thankfully, Kim has done it for me! I'll post her update here. See ya soon!

Hello everyone!! The sleep study results showed no problems with Apnea that concerned them. His oxygen level in his blood did drop. This means he will need Oxygen overnight while he is sleeping. They want to do a repeat test just to make sure the results are the same when he is not sick. Let's keep our fingers crossed. He hated to wear the oxygen in the hospital so I am sure he will not be happy with that. Then again there are worse things. We went to a GI consult yesterday. The doctor was impressed with Max and feels he is doing very well. He found no enlargement of the spleen and very mild if any enlargement of the Liver. Yeah!! This is what we thought but the ultrasound of the abdomen was controversial and the last one was done in November. Another specialty to follow up with every year. Never too many doctors, right? Everything is going well. NO NASAL DRAINAGE for about 2 weeks!!!! Max is as happy and sweet as ever. Of course, he is just like his big sister. Thanks to all who check in on Max, your thoughtfullness is always appreciated! Thanks again.

Kim

Monday, January 26, 2004 8:53 PM CST

Hey Eveyone,

The sleep study went okay. I wish I'd remembered to take my camera -- for a picture of all the things he had hooked up to him. I noticed during the night that his breathing seemed better than it's been at home -- I don't know if that was a good thing or a bad thing. I wanted the doctor's to be able to see how bad it can get. We won't know the results until (hopefully) Thursday.

We got about five inches of snow last night! Max loved playing in it today. After we couldn't make a snowman (the snow wasn't wet enough,)he decided he wanted to make a snow tree!! There are a few more pictures from our snow day on the photo page.

Thanks to everyone who continues to check in and support Max.

Paul

Saturday, January 17, 2004 6:31 AM CST

Hey again!

Sorry I didn't update last night, I was really exhausted. It's hard sleeping at the hospital, the cots are not real comfortable. Anyway, Max went home around 2pm yesterday. We are scheduled to do the sleep study next Friday night. So we get to stay again!! I told Dr. Arch I was concerned with Max's breathing for a couple of weeks now. He does stop breathing for a couple of seconds at a time. He did this before he had his tonsils and adenoids out a year ago. So my concern was his airway is closing due to MPS, but Dr. Arch said if that were the case, Max would have trouble breathing when he was awake also. That made me feel a lot better. Although she couldn't tell for sure, it appears the culprit may be that Max's tonsils have grown back!! So we'll see what happens next week. I'm sure he will also be seeing ENT again soon.

Other than that, Everything is great with the Max!! It's been over a month since he's cried when they've accessed his port for the infusion. The nurses said they've never seen a child get used to it that quickly. But we all know Max is TOUGH!! haha. Max would also like to tell everyone to route for the Eagles this week. He said the inexperienced Jake Delhomme will be no match for the best secondary in the league!! haha. I'll put up some new pics soon, we took some This past Sunday with all the kids in their Eagles jerseys.

Until then, Go Max and go Eagles!!

Paul

Tuesday, January 20, 2004 5:33 AM CST

Monday, January 19, 2004 10:32 PM CST

Hey Everyone,

Max's breathing still scares me at night. I can hear him in the other room as I type. I'm anxious for the sleep study this Friday because I know (I can hear) that he stops breathing for certain (brief) periods while he sleeps. I want to know what we can do to fix it.

As far as nasal congestion goes -- Max just loves to blow his nose with me. In fact, if you try to do it for him, he will protest and then show me how well he can do it for himself.

His nasal drainage doesn't bother me so much, because every other kid his age has nasal drainage this time of year. I pulled out the nasal aspirator before bed and we also put a humidifyer in Max's room at night (we usually have to sneak it in after he's asleep -- he's afraid of it because he think's it's scary) but it seems to help a lot. I can deal with the inconvienience of having Max blow his nose every twenty minutes. I just want to make sure he is breathing well.

I'll be posting the pictures of Max and the fire trucks as soon as I get them. I can only imagine how much fun he had at the firehouse!! We bought him this awesome fire truck set for Christmas -- and Max is the type of person who loves everyone and everything -- no matter what. That's one of the things I love so much about him. He loves fire trucks and baseball, fishing and football -- it makes no difference to him. He loves it all the same. If only we could all be as open hearted as he.

Unitl this Friday,
Paul, Max, Amanda and Kelly

Saturday, January 17, 2004 6:31 AM CST

Thursday, January 15, 2004 8:50 PM CST

Paul and Max are spending the night at the hospital tonight. Today was infusion day and the doctor's didn't like the way Max was breathing. His pulse ox seems to dip pretty low when he sleeps, and they wanted to do a sleep study on him. So he was admitted. As it turned out, there were no machines available to do the sleep study, but they wanted to keep him overnight anyway to moniter his pulse ox. They may decide to keep him again tommorrow night to do the study. I'm sure Paul will update tommorrow.

Friday, January 9, 2004 10:08 PM CST

Hello Everyone,

Max was eager to pose with his cast-free hand! Kim pretty much covered the latest news with Max on the guestbook. Things have been going well.

Max really wants to play soccer this spring. Actually, I think if it were up to him, he'd play every sport there is -- soccer, hockey, football, baseball... But soccer is pretty big where we live and the programs are excellent. Amanda wants to play this spring too -- either that or softball.

We are having an Eagles party this Sunday for the playoff game. We'll probably have a Superbowl party too -- hopefully it'll be an Eagles Superbowl!! Can I get a GO TEAM?!

The craziness of the holidays has kept me from updating lately. (Thank you Kim for giving me a nudge.) This holiday season was one of the best I've had in a long time. This past year has been pretty up and down. 2003 will always stand out as the year that Max was diagnosed and my whole life changed. But he is happy and doing well and that's all I can ask for.

Saturday, December 27, 2003 10:12 PM CST

Merry Christmas Everyone!!

Just a quick update. The kids had a great Christmas. I finally got the downstairs den completely converted to a playroom. The kids got a new TV and Playstation 2 from Santa -- now they never want to come upstairs!

Max just loved opening presents. He didn't care what was in them, as long as he kept opening them. His infusion went well again on Friday. Kim said he didn't cry at all again --just like last week.

I'll update more after the weekend. I'm pretty exhausted, and we still have to visit my Aunt Janet's and Uncle Denny's families. It's been awhile since they've seen Max and Amanda, so we're all looking forward to it. Until then, Happy Holidays!!

Paul & Maximus!!!

Friday, December 19, 2003 6:17 AM CST

Happy Holidays everyone!!

Obviously, we've been very busy getting ready for Christmas, but I thought I'd take a quick moment to catch up. The hand Max had operated on is doing great! He's had to use it a lot because of the cast on his other arm. Yesterday, he got the Yellow cast off and they x-rayed the arm. It's pretty much healed, but it's still a little tender, so they put a short cast on it for a couple of weeks. This time, Max picked a black cast!! Maybe I'll get some new pics up with it.

This week, Max was sick with a bad cough and runny nose. Monday morning, he had a fever so we had to have blood cultures drawn. Infection is very risky with him because he has the central port (I'm not positive on this, but I think it's because it's tied in with the blood stream). The blood cultures came back fine, but he wasn't getting better. So I took him to the doctor again on tues, and they said he had an ear and sinus infection. He's on Augmentin and seems better.

As far as the infusions go, everything has been smooth. As a matter of fact, yesterday Max didn't cry at all when the accessed his port. He was watching TV and when they stuck the needle in, he went OUCH, then went back to watching his show (Dora the Exployer).

We finally heard on the abdomenal ultrasound, and they said Max's liver and spleen are still enlarged, but they didn't compare the results to his last ultrasound, so we don't know how much they went down. We should hear on that soon.

Otherwise, all the kids are doing great. Max's cousin Tristan loaned him a Power Rangers movie, and now that's all we hear about!! Thanx, Tristan!! Amanda had her first chorus concert Tuesday night. Max and I were at the doctor, but it's going to be on local TV on Saturday. She is also auditioning for a child part in the high school play of The Sound of Music in January. And Andrew is still plotting his takeover of the athletic world (football, baseball, whatever). He is constantly playing with Max, showing him plays and everything, it's hilarious.

Hopefully we'll be able to see everyone over the holiday. I'm trying to make it to Aunt Janet's Christmas Eve party this year!! We'll cross our fingers. Until then, everyone have a safe and happy holiday, and Max thanks everyone for their support!!

Paul

Wednesday, December 10, 2003 10:05 PM CST

Hey everyone,

Max got his green cast off last week, which was the hand he had surgery on. His fingers are straight and he seems to use his hand with no problems!

He had a bad cough this week and woke up with a fever yesterday. Other than that, things have been good. I'll update more after his infusion today.

Thursday, November 27, 2003 9:44 AM CST

***LATER TONIGHT

As soon as I finished writing the update this morning, we had to take Max to the emergency room. He took a nasty fall down the stairs. His ankle was badly bruised and he was complaining that his arm hurt. His ankle looked okay on the x-rays, but he broke the radius bone in his wrist. So now he has a cast on each arm. This has certainly made for a memorable holiday.

He was in good spirits the rest of the day -- running around like nothing happened. He proudly holds up his newly bandaged arm and says, "I got this." Then he holds up the other casted arm and says "I got this too." I'll post a picture within the next few days.

Hello Everyone,

I came to the computer to write a short and cheerful Thanksgiving message. However, I just learned that Mighty-Max (a sixteen month old with MPS I who was transplanted three months ago) has passed away. We followed their family's story very closely -- the journal entries on their website were always so beautifully written. Please stop by their site, and think of them this Thanksgiving. I cannot imagine the strength it takes to go through what they've gone through.

Everyone have a safe and happy holiday. We will be thinking of all the MPS families today. I am so very thankful for my son Max and my daughter Amanda. They are my shining stars!! I'm also thankful for all the people who have opened their lives to us for support.

Mighty-Max website -- www.mighty-max.com

Thursday, November 20, 2003 8:01 PM CST

Hi Again!!

Max made out amazingly well yesterday and today. The cast doesn't seem to bother him, and he's not complaining that his hand hurts. He's a tough kid, I tell ya. The doctor prescribed codeine for the pain every four hours, but since he's not in any pain, I'm giving it to him every six. Everyone came by to see him today, so that made him very happy. He's been in a great mood all day. His Aunt Christine bought him a bunch of big T-shirts and his Grandmom got him a big Eagles jersey, #5 of course!! I'll update again soon to give the particulars, I'm pretty tired. Talk to ya soon.

Paul

Wednesday, November 19, 2003 4:55 PM CST

Hey Everyone,

Paul and Max are still at the hospital, but I know a lot of you are anxious to hear how Max made out today. The surgery went well. He is also having his infusion tonight -- he was originally going to stay overnight and get his infusioon tommorrow, but there are no beds left in the hospital.

Paul told me over the phone that Max has a giant green cast on his arm!! I'm sure there will be pictures posted in the next few days when Paul updates. He also said that Max was still pretty out of it from the anesthesia, but otherwise seemed okay.

They will be home late tonight. I'm sure Paul will fill everyone in on the details. Unitl then, I didn't want anyone to worry!!

Kelly

Wednesday, November 12, 2003 9:15 PM CST

** (Friday, Nov. 14) Just to let everyone know -- an MPS I baby is losing her battle. She was recently taken off life support. Her journal entries haven't been updated in the last week -- we've learned through another family. Please visit their site.

www.caringbridge.org/nc/mattie_east

Hey Everyone!!!!!!!!!!!!!!!!

Hope you all like the new pics!! I'm trying to update them more often, but as you can tell by the journal updates, I'm just not on top of it like I should be.

So, so much to tell. First of all, Maximus gets his hearing aids tommorrow!! We are very excited about this. It's exciting that he will be able to hear clearly for the first time in who knows how long. He is speaking more clearly it seems every day, and the hearing aids should compound his progress greatly.

Also, Max is having his left hand operated on next Wednesday. He will be staying at DuPont overnight and getting his infusion on Thursday. For the technical info, he is having all four A1's (the loop the ligament goes through where your finger joins your hand) cut and his carpel tunnel released. He will also have the tendon that goes through the carpel tunnel cut down so it's not so thick. The doctor said the storage from MPS has caused the tendon and ligaments to thicken, and that is why his fingers are locked up. As a lot of you MPS parents know, this is very common with MPS children. If you go to the MPS Society website, the logo is a child's hands with the fingers curled. When I first became aware of this, I started crying because Max's hands are what started us on this journey to begin with. Anyway, to get back on track, Max's right hand has actually gotten better so we don't feel surgery is necessary. His orthopedic doctor, Dr. Shariff thinks the infusions have helped with this. Max sill have a cast on for a few weeks, mainly to keep his hand still so the incision can heal. Then he will wear a specially made splint for awhile.

As far as everything else goes, Max's infusions are going well. He is getting better every week about accessing his port. I put a picture up showing the port on the pic page. He still gets diarhea which causes some bad diaper rash. He had to go to the doctor last week because it was so bad at school. But it is cleared up now. Thanx to Kim's mom for picking Max up from school!!

Also, believe it or not, Max gets sweeter and sweeter EVERY DAY!!! And Amanda has got to be the best big sister EVER!! She is so good with him, which takes a lot of patience for an eight year old. They were so cute on Halloween. I'll put more pics with their costumes up soon. It's so hard to choose the pictures, I have so many. I may make another website soon just for pictures and put them all on there.

I'll update again next week to let you know how the surgery went. Until then, try to visit the other Caring Bridge sites and give support to others struggling with illness. The other MPS families have been very supportive.

Paul

Wednesday, October 29, 2003 9:45 PM CST

Max's infusions have gone smoothly the last couple of weeks. He is still having trouble with his fingers. At night, we have to massage his hands to straighten his fingers. They seem to get pretty locked up during the day. It takes about ten to fifteen minutes to get them straight enough to fit into the splints he wears overnight. Sometimes this is very painful for him.

We were informed last week that Max's hearing aids are not covered by insurance. We've been very excited for Max to get them -- we think his speech will improve enormously. But they are very expensive and they have to be replaced every four to eight years. Will someone please tell me why insurance companies don't think it's important enough for a three year old boy to hear properly? Kim and I have both decided that Max will get these hearing aids, no matter what we have to do.

I will update again soon. Thank you to everyone who keeps checking in.

Paul

Sunday, October 5, 2003 8:15 PM CDT

Hey there again!!

Max continues to do great. He had a little mishap this week during his infusion. His line became disconnected while he was sleeping. So they are going to tape all the connections together from now on. As far as his hands go, it is getting harder to unlock them to put his splints on at night. My friend Tracy is a physical therapist for NovaCare and they have a hand specialist that is certified in pediatrics. So we may consult with him. We also have an appointment to meet with Dr. Shariff at DuPont again. Max met with her when he originally had problems with his hands (coincidentally, we had the first appointment with the genetic doctors the same day!!). So Dr. Shariff has been following his case with Dr. Arch and is very excited to see him again. We'll let you know how that goes.

Also, Max seems to be doing well in school. Millville has what is called the Abbott program, so children start school at 3 years old. He was evaluated for speech therapy last week, and we will be getting monthly progress reports from here on in. When he gets his hearing aids, that should help a lot as well.

As far as everything else goes, Max is still as sweet as ever!! He is always wanting to play with his cousin Tristan. They are like best friends!! And Amanda is dealing with everything really well too. She always wants to go with him on his infusions, but she has to go to school. She would do absolutely anything for him.

So, after I write this, I am going to attempt again to update the pictures. That Blast Worm thing has our computer acting strange and I've been too lazy to do all the updates. I'll talk to everyone real soon. Max appreciates everyone checking in on him.

P.S. Max's grandmom is going with him on his infusion this week!! He's so excited. She has helped us sooo much!! There is no way I would have made it through all this without her. My mother and father, as well as Kim's parents have got to be the best grandparents a child could ask for. We're very lucky to have so much family around (Christine and Jimmy, Mike and Bev, Matt and Tiffney, Cheryl and Mike, Debbie, Kelly, and Mike) (Is this a Grammy speech??). Everyone has helped more than they need to. Thank you!!!!! Talk to ya soon!!

Friday, September 26, 2003 5:29 PM CDT

Hello Everyone,

I'm sorry I've been slow about updating. Max did well with his treatment yesterday. He also had a hearing test in the morning -- the results are that Max has mild to moderate hearing loss. He will almost definitely need a hearing aid. I was actually pretty relieved at this. Max is still behind in his speech -- I'd rather that be due to hearing difficulties than developmental problems.

Other than that, things went smooth, for the most part. Max gets very upset when they try to start accessing his port. He cries and screams as soon as the nurses start touching his chest to feel for it. But once its in, he's fine and takes a nap.

We're becoming more concerned about his hands. His fingers curling and locking up was one of the first symptoms that took us to a genetic specialist in the first place. Since then, some days his fingers will be fine, and some days they'll be curled and stiff. Lately, he seems to have more and more trouble "un-locking" them, especially at night when he has to wear his hand splints to keep his fingers straight. We were hoping his treatments would help. Maybe we need to wait a while more. But we've started to think about surgery.

I will have new pictures soon. Thank you to everyone who keeps checking in and signing the guestbook.

Paul

Friday, September 5, 2003 9:32 AM CDT

Max did well with his surgery. He didn't have to stay overnight in the hospital -- he recieved his infusion last night. They also replaced his ear tubes, which were really clogged. But his hearing test didn't work. They think his hearing might improve with the new tubes and we also want to see how he does with speech therapy. If things don't improve, then we'll do the hearing test again.

Overall Max had a very long day yesterday, but was in good spirits before he went to bed. He threw-up a couple of times during the ride home, but that's nothing unusual after surgery. I'll try to write more later -- I just wanted to post a quick note that things went smoothly yesterday.

Sunday, August 31, 2003 8:56 PM CDT

Max had a long day this past Thursday -- he had his pre-op testing for his upcoming port surgery, new ear tubes and Baer test (hearing test, not sure of the spelling!) All three will be done at the same time next week -- he'll probably stay overnight and get his infusion the next day, which would be Friday.
I made sure they're going to do the flexible bronchoscopy. It took a lot of insistance on my part, and I had to go through quite an arogant anesthesiologist -- which was a little frustrating! He tried to tell me that there was no need for such a procedure and he's done a million surgeries and I should just trust his obviously supreme area of expertise. I put it this way to him -- If Max doesn't have the bronchoscopy, he doesn't have the surgery. Maybe I'm one of those "annoying" parents that nurses and doctors and anesthiologists joke about and hate to deal with. But I'd rather be a parent who's over informed rather then under informed. I know I've mentioned it before, but a bronchoscopy makes the intubation process smoother, which can be tricky on MPS kids because of thier narrow airways. I don't want to take any risks. I'd rather make sure they do a procedure that may not be necessary but could be beneficial rather than rely on wishful thinking.
Anyway, after the pre-op stuff, his infusion went well. They had to stick him three times, which he certainly wasn't happy about, but then he fell asleep for three hours.
He still has a little bit of a cough from his recent sickness, but its much better than it was last week. He's been back on his nebulizer two times a day, and probably will be for the next couple of months. But he's still as happy and sweet as ever. We are off to the Phillies game tommorrow -- he's thrilled about that.
Amanda starts school on Wednesday -- third grade -- and we're very proud of her as well. Kim took her for a Mother-Daughter Day this week -- she got her hair done, her nails done and I must say, she will be the best looking third grader at Mount Pleasant Elemantary! Also, Thank You Kim!
I'll let everyone know how the surgery goes next week. Thank you to everyone who keeps checking in and sending words of encouragement. It means a lot.

Paul

Friday, August 22, 2003 7:44 AM CDT

Hello Everyone!!!

Unfortunately, Max did not have his infusion yesterday. He has a slight fever and cough, so Dr. Arch felt she didn't want to risk a reaction. She felt missing one week would not be that bad. Hopefully this will be the last one he misses. We are putting Max back on Pulmacort treatments nightly until at least October. This should help his breathing, especially at night.
Other than that Max is doing great!! His energy level is unbelievable!! He never wants to go to bed anymore! He's wants to stay up to watch the Phillies and wrestle!!
Other good news!! I have rearranged my schedule so I can take Max to his infusions every other week now. Kim has been taking him every week so far. Thank you, Kim!! We'll have Max's pre-op consult for his port surgery next week, so I'll let everyone know how it goes.
I'll talk to ya next week!

Friday, August 15, 2003 9:23 AM CDT

Hello again!!

Sorry for not updating last week, we've been really busy with our new house. Amanda finally has her room done! To tell you the truth, there hasn't been a whole lot of news as far as Max's infusions go (this is good!!). He is still scheduled to have his line put in on Sept. 4th. As far as more improvements, it looks to me like his belly is definitely shrinking. So I hope this means his liver and spleen are getting back to normal. We won't know for sure without getting another ultrasound. It also looks like he is getting taller!! This is good news because his growth has slowed down, and MPS-1 kids tend to be short. Other than that, he is still loving playing baseball and basketball. I swear, he would let me pitch to him for eight hours straight!! Looks like he has his energy back!!! So, everyone keep in touch, and email me if you want to know anything in particular.

Paul

Sunday, August 3, 2003 7:13 PM CDT

Hey Everyone!!

Sorry for the delay in updating. Max's infusion went well on Thursday, except for the fact that it took an hour longer than normal. They increased the dosage by a little bit, but it shouldn't have made the infusion last longer. I think there was something wrong with the machine that administers the medicine. He also had a consultation for the surgery to put in his main line. That went well, but I just had some questions about the anesthesia, so hopefully that will be cleared up. For those that don't know, anesthesia is very risky for children with MPS-1, mostly due to the intubatation (a tube put down your throat to help you breath while under anesthesia). But that should be no problem. I'll keep you updated!! Talk to everyone soon.

Paul

Friday, July 25, 2003 0:38 AM CDT

Max's infusion went well today. We weren't sure he would be having it this week -- Kim picked him up from preschool yesterday with a fever and we were told to hold off until early next week if he still seemed sick. Kim took him to the doctor and he has viral conjunctivitis. (How he got that, I have no idea! I remember I came down with it a few years ago, but only because I was trying on contacts at my optomotrist's office. Who knew they don't keep them clean!?) Bacterial conjuntivitis is Pink Eye -- it's apparently harder to contract the viral form. My best guess is that he picked it up at school. Anyway, he was better today and able to recieve his infusion. He is still doing very well.

I want to extend a speacial Thank You to Tami Slawson for putting up the new ERT board! I think it's a great idea. It's a forum for all parents who have MPS children on ERT. I have added the link below and encourage everyone to stop in to check out the website.

Paul

Thursday, July 17, 2003 9:37 PM CDT

Hi Everybody,

We had a great day today. Max made out well with his infusion. His sister Amanda went with him today -- first time for her.

We also got the results of the psychological evaluation. We were worried that there might be some problems -- Max doesn't speak very clearly yet and sometimes seems to have trouble understanding things. He has been getting better with talking lately and we were told by Dr. Muenzer that Max could have high frequency hearing loss, which could explain his speech and comprehension difficulties. But we were worried that Max might have developmental delays due to storage in his brain. As it turns out, everything in the evaluation came back pretty normal, except for speech and language delays. This means there are no developmental problems! So he'll start his speech and language therapy soon. I should also mention that speech and language delay is something that runs in the family and might not even be due to Max's disease. We're also going to have his hearing tested soon. He'll have to have a Bear(spelling?) test soon, which is done under anesthesia. We've been waiting for him to have to have a couple of other procedures done so they can do them all at once while he's under.

We're still seeing little changes in Max all the time. He's definitly getting better at baseball!! That's all he ever wants to do -- play baseball. And when he's not playing, he wants to watch it on TV. He's been non-stop lately.

I hope to be posting new pictures soon. I read some of our MPS friends websites tongiht and I'm glad that they seem to be doing as well as Max.

Paul

Friday, July 11, 2003 9:38 PM CDT

Hey Everyone,
As Kim mentioned on the guestbook, infusion four is completed. Max has been doing really well. We were out in the yard playing golf tonight (one of his new favorite sports to play!) and he seems to be running faster. It looks like he'll be able to keep up with his sister and his cousins a lot better. He also seems to have more coordination and his movements seem much more smooth. And his skin does look less course.

As for his cognitive development -- he is still picking up something new everyday. His latest thing has been shrugging his shoulders every time you ask him a question or even if you're just looking at him -- and he always has this mischievous grin on his face when he does it!!

All in all, I am amazed at Max's strength and spirit. I feel the same about our new MPS friends as well -- Alli, Sammi, Jacob, Austin and Ryan (just to name a few.) With all Max has to deal with, he is still always smiling, always laughing and is always upbeat. I don't know how he does it. As parents, we have no chioce but to be strong for our kids. But Max constantly reminds me who the strong one really is.

Paul

Thursday, July 3, 2003 8:22 PM CDT

Hi everyone!! Max made out well today with his infusion. It looks like we don't have to worry about any reactions for now. He has a consult on July 31st for the surgery to have his central line put in. This will make his infusions a lot easier. He is also having his full psychological evaluation on July 8th. I hope everyone saw the 60 minutes episode on Ryan Dant last night. If you missed it, you can download from Ryan's website. The link for it is below. Talk to everyone soon!!

Thursday, June 26, 2003 8:17 PM CDT

Hello Everyone!

Max did very well with his infusion today. He slept through most of it. The doctor doesn't think his seizure on Sunday had anything to do with his treatment and he is all better from the stomach virus. We'll be keeping an eye on belly!!! I've learned from reading other MPS family websites that one of the first noticeable signs of treament is a reduction in belly size. (Which means he won't be able to show-off his big belly to his Pop-Pop anymore!!)

Tuesday, June 24, 2003 8:25 AM CDT

Hi everyone!! Max is feeling much better today!! Kim thinks he may have had a stomach virus and his fever spiked. Today I wanted to share some websites of other children with MPS. They and their parents have been extremely supportive and given a lot of insight into what to expect.

www.caringbridge.org/ca/slawson: Jacob and Samantha are a brother and sister who started Aldurazyme treatments a few days before Max. Their mother Tami has been great about sharing information.

www.caringbridge.org/nd/allison: Allison May, or Alli is a beautiful little girl who will be getting her fifth Aldurazyme treatment this week. The Restemayer's have also been very gracious to us.

www.caringbridge.org/sc/cjpace: CJ Pace is a little boy with MPS that had a Bone Marrow Transplant. We wish him well!!

I'll try to add more periodically, but I wanted everyone to see that Max isn't going through this alone. I hope one day he'll get to meet some of these children!!

Goodbye for now, Paul

Sunday, June 22, 2003 7:58 PM CDT

Hey there everyone!! Just wanted to leave a quick note to thank everyone for writing and/or posting. I love hearing from other MPS families. I hope that one day Max could meet some of the other children that also have this disease.
On a medical note, Max had another seizure today. It's been 8 months since he's had one, but we hope it's not related to the Aldurazyme infusion. Kim was at the zoo with him and Amanda today, and he started to not feel well. When she got him home, he had a fever. Right after she gave him tylenol and cold compresses, he seized. It appears as though it wasn't as bad as the last one, but we'll keep a close eye on him anyway. He seemed back to normal tonight. I'll keep everyone posted.

Paul

Friday, June 20, 2003 9:07 PM CDT

Max made out well with his first infusion yesterday. There is more of a chance of allergic reaction the second or third time, but it's usually just a rash or hives. We should see a decrease in his liver and spleen size over the next six months. We'll keep you updated on his progress.

Wednesday, June 18, 2003 6:14 AM CDT

Hey again!!! Max will be starting his Aldurazyme treatments this tommorrow. I'll let everyone know how he made out and keep you posted on how it's affecting him. He should start feeling a lot better soon!!!

Thursday, June 12, 2003 9:21 PM CDT

Good News!! Max's insurance finally approved Aldurazyme!! He should start his infusions the week after next. Kim and I are very excited. Right now, this is the only viable treatment for Max. If you'd like any more info on Aldurazyme, go to www.aldurazyme.com. They have a lot of info on the treatment there.

Goodbye for now, Paul

Saturday, June 7, 2003 6:38 AM CDT

Hey everyone!! Sorry I didn't write the other day, I've been pretty busy. Max's ear appointment went well. The doctor said his tubes are not clogged now, but they're dirty. He is going to have a special hearing test that has to be done under anesthisia, so the doctor wants to clean the tubes then. If that doesn't work, he'll need them replaced. We didn't schedule anything because we want any procedures under anesthesia to be done at the same time. Anesthesia is very risky for kids with MPS. The reason for this is the intubation (they put an air tube into your throat) which can cause swelling in an already restricted airway.
So hopefully in my next entry, I'll know when Max is starting his Aldurazyme treatments. It should be in a couple of weeks. Talk to ya soon!!

Paul

Thursday, May 29, 2003 9:40 PM CDT

Hi and welcome to Max's web page. We wanted to put up a site where everyone can get updated on how Max is doing. First, I'll give a little background on what has happened so far.
Max was born on April 16th, 2000. Over the next three years, he had a lot of "little" health problems (2 inguinal hernias, umbilical hernia, febrial seizure, cronic ear infections, tubes in ears, tonsils and adnoids taken out, and almost always having a cold.) Then, earlier this year, Max's fingers started to "lock up". At the same time, his pediatrician thought that he may have some type of syndrome. So we went to DuPont to see an orthopedic specialist about his fingers, and on the same day we saw Dr. Gripp, a genetic specialist. She did several tests, and right before Max was to have his hand surgery it was cancelled and his mother and I were told to come in to talk to Dr. Gripp. On March 31st, we found out about mucopolysaccharidoses, or MPS-1.
Mucopolysaccharidoses consist of a group of inherited metabolic disorders caused by a deficiency of the specific lysosomal enzymes needed to break down mucopolysaccharides. Mucopolysaccharides are long chains of sugar molecules used to build connective tissues and organs in the body. When mutations occur in the genes for the enzymes involved in the normal turnover of mucopolysaccharides, excess amounts of them are stored in the body, causing progressive damage and, in most cases, eventual death. Because some of the excess mucopolysaccharides are excreted through the urine, diagnosis often can be made through clinical examination and urine tests. Although each type differs clinically, generally, people with mucopolysaccharidoses experience a period of normal development followed by a decline in physical and/or mental function.
Obviously, we were devestated when we found out what had been wrong with Max, and what would follow afterward. Max is the sweetest little boy, and it didn't seem fair that he would be put through this. I immediately set out to learn all I could about this disease. In the mean time, Dr. Ellen Arch at DuPont took over Max's case. She has had experience with storage diseases, and she began to consult with Dr. Joe Meunzer at the University of North Carolina. Dr. Meunzer is one of the most knowledgeable on this disease in the country.
So our next step was to decide on treatment. We visited the Bone Marrow department at DuPont, and also at Duke University. DuPont has never done a transplant for MPS-1, but Duke has done almost 30. We were told the survival rate for these children was 80 percent. So then we met with Dr. Meunzer at UNC. He really enlightened us with his knowledge and experience with this condition. He also gave us the opportunity to visit with Edy, the first patient to receive Aldurazyme since the FDA approved it in May of 2003. Her and her mother were very gratious to us and answered many questions. We hope all the best for Edy and her family.
Aldurazyme is a cloned form of the enzyme Max is missing. The clinical tests have been very promising. So Kim and I have decided to go this route upon discussion with Dr. Arch and Dr. Meunzer. This will involve Maxwell getting infused with Aldurazyme once a week from now on. We felt going through a bone marrow transplant was much too risky. He should start his infusions in a couple of weeks, so I'll keep you posted.
I hope I didn't go on too long, but there was much to cover. Please feel free to email or post on the guestbook if you have any further questions. And thanks to all who have been so supportive of us through all of this.

Thursday, May 29, 2003 9:11 PM CDT

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