It Must Be Brushed!

In our house John is very insistent, your teeth and your hair must be brushed, no matter how short that hair is!

New Haircuts!

John and I both got new haircuts this past week so we thought we would share. John is doing GREAT, he is getting stronger and faster every day, believe me the dogs are scared. His new trick this last week was feeding himself with one hand. John has fed himself cocoa puffs and cheerios and a variety of other things for a good long time, but he mostly has put them to his mouth with his left hand and then used his right to help get them in. Well the other day at his IEP meeting we were talking about he just didn't seem able to eat one handed, he was obviously listening and decided that we should know what he was capable of as that night at dinner he started feeding himself one handed like he had been doing it forever. He amazes me at how determined he is to prove that he is a big boy despite his tiny stature.

John's IEP, individual education plan, went great, beyond great it was perfect. This is the plan written between the parents and the school district regarding special needs kids and what they will be provided with. It can be a rather intimidating process and we have heard horror stories about school districts that are just bears to deal with. Not ours, our school district not only set out to make sure that John is getting all of the therapy that he needs but went further and wrote in his plan that his overall diagnosis that most affects his education is systemic ataxia, unsteady muscle movements. They did this to make sure that everyone who sees this kid knows that he's very smart and will push him to excel and overcome what limits his body has. We were thrilled! So often people see John and just see the cute and the disabilities and the people that did John's IEP saw the abilities and the potential and the amazing little boy that we know, and the cute too of course, but we are most thankful that they saw that our little guy is a big smart boy in his head, even if his body holds him back some.

So we've met John's new physical therapist, his new occupational therapist is even taking a continuing ed class on eye/hand coordination, an issue that John has particular problems with, he will continue to see the same speech therapist and still have pool physical therapy with Mr. Paul. He will also start going to the preschool at the MOOG school this next year, he will get to spend an hour each day we are there in the classroom during their music and social time. That will be cool as John only gets to see other kids when we visit family, occasionally go to the country church or passing by us in hospital or mall.

Before I go I have to tell you another of John's latest coolest new skills. Mr. Paul has been trying to teach John 'daka' for a while, hold your hand up in a classic Fonzi pose and say 'daka' and you got it. Well John not only can hold his hand that way now, but has even said 'daka' a few times. I knew the kid would speak Chinese first, I just knew it.

Not my usual thing...

...but http://www.discoverytoyslink.com/esuite/home/wrentoys is a fundraiser for the Prune Belly Society, so if you're into buying toys at the moment and looking for a good cause to support give them a look see. They are the people who we talked to when John was first diagnosed and we were reeling, searching and looking for any info that we could find. They were very kind and helpful and have been a great source of info and support to us and I'm sure other families too!

A Long, and Long Awaited Update

Phew, sorry it took so long to get back to this. Finally a phone call from my cousin reminded me that there was something that I had been forgetting to do, thanks Susie!

Let's start with a picture...



This is John opening his Easter present from one of the kids that is on one of the Ebay boards that I'm on. The kids, mommies, did a swap so we sent presents to a little boy on the east coast and got this cool box in exchange. John loved it. Even today he had the carrot madly waving it at the dogs babbling something, I'm sure it was some kind of incantation to make them stand still until he could run them down.

This update has taken so long, not because John has been sick or in the hospital, quite the opposite, John has now made all of February, March and April with no hospitalizations, this is a record for him. Actually right now is the longest he has been out of the hospital for the entirety of his life and you can tell just by looking at him that he's feeling great and doing awesome.

Holy week normally finds us in the Hospital, this year we not only were home for Holy Week but in church for most of it. Papa came to see us the next week and oh what a time we had. It's always great to get to visit with Mark's dad this time John especially loved it and even stood by the door and cried when Papa had to go home. Every so often he still tells us that he's calling Papa on the phone and is always glad to hear his voice when he's really on the other end. Sure is cool to see him start to remember those who love him so dearly.

Amy, John's speech therapist tested John earlier last month to see where he was with his receptive and expressive communication skills. Remember John has only been hearing for a little over a year and prior to that as far as anyone could tell John never heard speech before. We were delighted, albeit not really suprised, that John is very close to age level for receptive language, meaning the little silly can really understand everything we say. Expressive communication is much harder for him, he is way, way behind, like at 12 months until you start looking at sign language and then he is catching up. Amy expects that John's receptive language skills will go off the chart and that his expressive using sign will match it soon, but that the verbal communication is going to take a good long time to get there. She thinks that we should never say never, we agree, but that most likely if John is going to be a verbal communicator that it will happen by the time he is 6 or 7. Of course the time after we had this conversation he showed that he was listening to us very well and showed us that he could immitate lip movements and sounds better than he had ever done before. He still struggles with this but somehow he seems to be trying harder lately and that is a vast improvement.

Time for more pictures...



John loves modeling for the little sets that I make and this time even daddy got in on the act at the very end. John is always excited to see a new shirt on the mannequin and tries to rip his off so that he can go and do pictures. Of course pictures used to be easier before he got to be more mobile, now he can do things like try to run his little push bike into the footlights, but even that is just too funny to pass up.

The last set that I did is the very first time that John was able to stand long enough for pictures without Mark supporting him.



He was so proud of himself and actually turned himself around in the gait trainer a couple times before we were done. He has gotten so much stronger. He even has asked, on a couple of occasions, to have the seat removed from the trainer so that he could walk without it. The last time was when we took him for a walk last week and he actually walked a good half block or so with no seat for support. He was very proud of himself and so are we.

Of course with more mobility comes more bruises, but they are nice normal 3 year old bruises so we are happy with those too.



This pic was pre-bruise, but if you check out the knee on the off side of the bike you'll see that it is near the ground. Once he got it there he decided that he was a big enough boy to turn himself around on the bike without help. Earlier he slid off the bike onto the floor without help and did great so we watched to see what he could do. Plop, right off the bike, fast first into the concrete. A big ouchy bruise on the forehead and a nice bloody nose to go with it. Poor kid. It did prove that his clotting factors are much better though because that bloody nose stopped on it's own before we could even get him upstairs and do more than wipe it off. The nose isn't broken and the bruise is fading, but he's still excited and ready to get on that bike.

We took John to St. Louis for checkups Friday and he did great. He is now officially 34 inches long, his head is growing and poor thing he's gaining no weight whatsoever so we're taking him to the pediatrician again in a week or so for another weight just to keep an eye on him. John changed from baby formula to junior formula a couple months ago and a couple weeks ago had finally progressed to where he was getting 1000 calories a night from the formula. Of couse that meant he totally quit eating, oh he might eat a bite of chocolate or ice cream here or there but other than that forget about it. We talked to his GI nurse and we all decided that he needed to eat, so cut his calories in half and viola guess who's hungry. John is now eating like crazy, he loves pork and is so wild about it that the other night he kept reaching over and stabbing the pork steak with his fork while we were trying to cut it up. He has also developed quite a taste for fruit and loves beans. Tonight he even managed to eat a few noodles, he doesn't normally like noodles, and ate his grilled chicken after we told him that it was pork chicken, he smiled signed pork chicken and proceeded to eat what before would not be touched because it wasn't pork. You would think that the kid watches a bunch of Emeril but really he doesn't.

One last picture for the night...



So even though the update has taken a long time to get here, the boy is doing great, he's signing to us all the time, chasing the dogs, reaching out for stuff and even falling off his bike, but all in all he's just amazing us every day!