Friday, September 8, 2006

Three Cheers for Good News!!!!!

Cheer #1: John's GI appointment in St. Louis today went very well, great in fact! He is now 22 1/2 pounds, 33 inches tall (he was only 31 at GI but relaxed for the next appt so 33 is the figure) and is now NORMAL height/weight ratio. He's still a little bitty squirt, but a growing and doing fantastic little bitty squirt. He started to cry in the office because he couldn't get in his gait trainer until Miss Sandy was done, but once he was in his gait trainer he was a happy camper. He walked all over Children's, went to see friends on the floor and walked out to the jeep to leave. That's a pretty big trip for little short legs, probably equal to from one end to the other of a good sized mall. He is getting so much better at controlling the gait trainer, and is doing very well at getting between people, not running into stuff and finding his way without much and often time no guidance other than one of us walking with him. For labs he started to cry when I took him out of the gait trainer, but I told him that as soon as the lady was done taking his blood he could get back in, so stopped pouting and stuck his arm out and gave the lab lady a get-on-with-it look, he winced a bit when the needle went in but never cried or fussed and just patiently waited until she was done then 'jumped' off my lap and was ready to get back in the gait trainer. Ah the freedom of self-determination, it's a good thing, for this we cheer!

Cheer #2: By the time we got to John's nephrology appointment the lab results were in. John currently has NORMAL kidney function for someone his age and size, NORMAL! The doctor was thrilled with his progress and amazed at how well he is doing.

Cheer #3: Today's nephrology appointment was in part a regular check-up and was also time to discuss surgery for bladder re-sizing, and some other pretty major stuff, a big big surgery that everyone has pretty much been assuming would come at about his 3rd birthday. Well, are you ready to cheer, here's the news, because his kidney function is NORMAL, because he is doing so well, there is NO need for surgery in the forseeable future!!!!! We are celebrating!!!! He will still need to have periodic labs done and be followed by the nephrologist, but NO SURGERY as long as he continues to do well.

Of course since all these cheers meant that we spent the entire day in St. Louis we are all exhausted and in fact the little silly man is sound asleep in his bed. He has really decided that he is going to do things his way though so we've already had to go back in there and fasten his diaper closed ;-)

This picture was taken earlier this week. If you look close you will see a pair of pliers in John's hands, those were what he was helping daddy build the train with. He had a great time and just loves to get to help!

Pool Physical Therapy this past week was much better, much less screaming involved, actually none at all after the first minute and he seems like he's starting to like this. Mr. Paul, the physical therapist, told us that we would see his strength grow exponentially from the pool therapy and we are seeing just that. John's new favorite thing to do is take his gait trainer and ram it against the front door until you take him out for a walk. Mind you this means that he has traveled across carpet, which he was unable to do even a couple weeks ago. He is now able to go all the way around the block under his own power with just a little, less all the time really, help in staying in the road and out of the weeds and such.

Occupational Therapy with Miss Desiree was great too! He is now sorting colors flawlessly when he actually looks at them for her too. She played around with him talking to him and such to see what kind of directions he would follow and what he understood, she's fully convinced the time has come for letters and is returning next week to start pre-reading, as in learning those letters!!! She told us that we should understand that John's muscle planning issues will make it very hard for him to actually write in the traditional methods, at least early on, and that we needed to start investigating assistive technology to let him express himself 'verbally'. So we are starting to look into this, we have heard that there are keyboards and such made for little kids to help them with this. If you've ever read Dean Koontz's Watchers you know what we are talking about, only instead of a typing dog, we're looking at a typing toddler!

All news from here is good! I can't remember everything, but know that each and every day brings a stronger, more determined and even happier, if that's really possible, little boy.