Time to Slow Down!

This past week has been one of interesting and in the end good developments.

Therapy on Monday was good, and John did so well, we're so excited to see all the progress that he makes. Wednesday, well that was another story. I took him to therapy by myself and he seemed excited and ready to go, he was good on the car trip there and even getting into the building he seemed ready to go. But well, all good things must come to an end, and this one surely did, and quickly too!

John ran right into the school and actually stopped and acknowledged a few people with a little wave, but when he got to Amy, his therapist, well he wouldn't look at her and instead of coming to her he wanted to run off into the supply closet to play. Now I'll spare you all the details, but suffice it to say that he spent his entire hour of therapy showing himself to be a very smart, very stubborn and very burnt out little boy. Instead of playing nicely at the table he tried to climb out of his chair to get in the toy box. Instead of telling us what the little girl in the pictures was doing he was only interested in the doggie. Instead of doing anything that he was supposed to do he did the opposite and then grinned and gave us the thumbs up sign. Amy was frustrated, mommy was frustrated and John well he had already taken out his frustrations on mommy and Amy and still had some more to go.

All the way home I thought and thought about what was going on with this child. I've joined an email list for LCMS Lutheran homeschool mommies and when I came home I asked them if they or their child had ever just hit the wall on therapy. Several mommies there have special needs kids and they were very helpful, very supportive and well all of them really helped us think through some stuff and make some decisions. First off it finally gave Mark and I the impetus to really sit down and discuss John's schedule and therapy and what we wanted to see and expected, and low and behold we were both thinking similar thoughts, like 'why are we driving an hour to therapy so that someone else can play with our kid when we could do this at home', we just thought we were the crazy one.

Well through much discussion, prayer and supportive input from friends we made some decisions regarding John and the various therapies and such that he has the opportunity to be in. Our determination has always been that he was a little boy first, and a special needs kid only when that interferred with little boy, and somehow we just got ourselves and our little boy lost in the therapy jungle. It's hard when people tell you things like 'I know a couple who took their child to therapy all the time and that kid is doing great' to then say "STOP" this is all too much and we have to slow down. It's hard to buck the authorities on anything, but we've finally decided that just as important as listening to our own selves when it comes to his health care it is important that we listen for therapy as well.

Mark called the Moog school and let them know that we were taking Friday off and starting vacation early. We're headed to Montana on Tuesday. He also let them know that we are only going to be bringing John in one time a week for the remainder of July and August and hasn't told them yet but when we get to setting the fall schedule he's only going one day then too. We have seen for quite some time that John makes great progress on the days that he comes back to school after several days out, and well it's just time that we take our homeschool ideals and apply them to therapy as well.

So we are off on a new adventure in our house. So far it's been fantastic. We've had time to relax, play Uno - which John loves and is getting better at, and draw and read and go for walks and all those things that our little boy loves and that he learns from too! Mark and I have started really working on learning more sign too, and hoping that as summer progresses we can get to the point that we can sign most of what we speak, that way John can pick up language expression naturally by watching us and repeating. Even tonight he was copying the way that Mark would hold his hands and fold his arms, it was funny.

Tuesday we are off to visit my family in Montana, where John will get to meet his aunt, uncle and cousins and see grandma too, get to ride a horse, pet some chickens and ride on a four wheeler and who knows what else. We'll update and post lots of pics when we get back!

Little Kicker

Today was not our typical Friday. Usually we all leave out of here at about 10:30a for speech therapy in Columbia, then lunch, then off to Sedalia for pool therapy and all get back home after 7p or so if there are errands to run. Today therapy times were different so our whole day was different too, and so was John!

Little boy went with daddy to speech this morning an hour earlier than normal and did really well. By the time he got back home he was ready for lunch and a nap. He woke up in time to get ready to go to pool therapy late this evening and was so excited that he hugged his swim diaper several times before he would let it go. He jabbered all the way to Sedalia and when we got there he was eager to get in now.

Usually Mr. Paul has to do a lot of encouraging and such to get John to put out a few measly little kicks here and there, as John loves to float and really looks like he's on vacation as soon as he's let go. Well today he had a bigger audience and therefore, true to John's personality, he performed much better. When he realized that perfect strangers would cheer for him if he kicked he went crazy and kicked and kicked and kicked. He kicked while floating on his back, and on his stomach and even kicked hard enough on several occasions that his toes peeked out of the water. The more they cheered the more he kicked, it was fantastic to see, and well worth all that cheering.

Botox?

Yep, botox. John had his first appointment at the Developmental Clinic today and they want to do botox treatments and some pretty agressive neck therapy to give him the best chance of getting his head up straight. All in all they are extremely impressed with him and all the stuff that he can do and how fast he is learning, etc. They did answer for us why he is so little and growing so slowly that it seems that he's hardly growing at all. It's his kidneys, well we kinda suspected it, but it was nice to hear a doctor who has dealt with these things before confirm that it was that and not other issues. So we looked it up and Gary Coleman of "What'cha talking 'bout Willis" fame is 4'8" tall. John is currently 34" tall or 32" tall depending on who measures him and how, so he's got a long ways to go even by Coleman standards. The doctor who told us this and prescribed the botox is the very first doc that we've dealt with that has seen a lot of prune belly kids in her practice over the years. She was very encouraging and said that John is doing amazingly well! We did find out that all the conjecture about one leg being shorter than the other is just conjecture and his hips and spine are fine. He'll be monitored in this clinic every 6 months for the forseeable future and they will be able to keep a sharp eye on his spine, which could easily go into scoliosis because of his lack of stomach muscles, and do something about it before it gets bad. John is going to go and see an opthamologist for an eye check-up, no one seriously thinks there is a problem but it's time to make sure, other than that he got all thumbs up today from everybody.

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!