Saturday, June 16, 2007

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!

Friday, June 8, 2007

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.

Wednesday, June 6, 2007


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.