Well we had our regular check up visit at Shriner's yesterday. The drive was kinda hard with me being as big as a house, and Pj not sleeping either direction. But here's what the doctor's and therapists said:

I had been wondering about Pj and long distances. So I asked about if I should purchase a double stroller for these too or if Pj would eventually get a chair for long distances. They told me no wheelchair for Pj. Even for long distances. They said that he has the capacity to build up to it, so for now keep him in the stroller if we have to or just keep the stroller available, but that he did not under any circumstances need to start using a chair even under long distances.

Lower Extremeities/PT- Pj's AFO's hadn't fit for about 3 wks, but I could not make an additional trip down there because of the distance and time it takes. But anyhow he was still wearing them 75% of the time. Anyway they said his feet were unbraceable. We always thought we'd be able to avoid surgery b/c he reacted to well to serial casting as a little baby, but now they have decided he needs to have " lateral column shortning, posterior lateral release, adn posterior medial lengthening. " This seems to be the "typical clubfoot surgery" that we were going to have to do when he was a baby, but escaped with the serial casting, and DBB. This surgery will put him off his feet for 6 wks each foot. I don't know how were going to contain him. Especially since he just got off his feet. Also, the doctor said something weird because of his hips and knees being good they want to treat it more like an idiopathic club foot than a arthrrypotic club foot... What that means is beyond me.


Upper Extremeties and O/T- We saw a different doctor and they think Pj is a really good candidate for somethign they called a long head tricep transfer or a +/- split tricep transfer. This is the way they explained it to me- tricep has 3 heads, and 2 nerves that activate it (1 responsible for 1 head, one responsible for 2) and they would remove the head and nerve and transfer it to his bicep. Then he would have active flexion, BUT he would not loose extension as has always been explained to me when you talk about transfering the tricep. And I did not want that. They said the scarring is less than using a pec or latimus dorsi muscle adn you would loose virtually no function. They think he will be ready by this fall. They say he is a good candidate because he has 75 or 80 degrees of passive flexion in each elbow and did not have to have the elbow release surgery so there would be no scar tissue to work around. He has 0 active flexion in either arm at this point. They are wanting to start all these surgeries in September as they are book for the summer. They want to do 1 foot at a time and 1 arm at a time. They said it is a possibility to do 1 foot first, then possibly combine 1 foot and one arm, and then come back 6 wks later and do the final arm. Each surgery requires a 2 - 4 day hospital stay and some rehab besides the foot surgeries requiring him to be off his feet for 6 wks with a visit at 3 wks and then a visit at 6 wks. I am so excited for Pj and I think this is a great time because he is still so young he will not remember and he is still so adaptable he will go right into it. But I'm scared too. I'm scared to put him through so much but if he can get this done and rehabed he can start school next year and I really don't think he'd be behind kids his age at all and I think that would benefit him greatly. I know some of you are against so much surgery, but I've been the STRECHING queen plus all the splinting and O/T&P/T. We've done so much