Just thought I'd post a little update on us...
We spent the morning at Rehab Center for Children. Our physiotherapist has been trying to get us in there for a while, and there happened to be a cancellation today. Noah saw the new orthopedic doctor to assess his weight bearing issues. His left hip and knee are very, very tight, which is what is keeping Noah from progressing to fully standing on his own. The xrays showed that his hip is slightly out of place, but not enough to do anything about it...the good new is that it's more of a muscle issue. Because it is only on one side, it is very difficult for him to even try and compensate. So the best thing we can do is to work on stretching and positioning. They decided to fit him for a stander...a device in which Noah will be forced to stand and weight bear. Ok, that sounds a bit barbaric...actually, they do look a bit like some barbaric torturing device, but it's really not that bad. It will have a nice tray in front, so basically like a high chair, only he will have to stand rather than sit. I'm thinking this will probably be a challenge to confine him. We will have to think of some fun activities to do when he is in it.
He was also fitted for AFOs (ankle foot orthotics, or braces) to help position his ankles better. This involved casting both of Noah's feet up to his knees to make molds. This was NOT fun. Noah was VERY mad about this procedure and it was quite the wrestling match trying to get these casts on. Wish I'd had my camera...we were quite the sight, with Noah kicking and screaming...plaster EVERYWHERE! So in about 4-6 weeks, we should get the stander and braces. The stander he will spend short periods each day in, and the braces he will wear as much as possible, even for sleeping if he will tolerate them. Just another thing to add to the mix! We did get to pick a custom design for them which was fun...Noah's will be blue with cars, trucks and airplanes on them.
CPAP is going much better. At our appointment last week, we got a different mask to try, which has different pressure points. It fits him so much better and his nose is healing, with no further skin breakdown. We are now getting very little leak in the mask, which means much fewer alarms during the night. The way things were going when we first came home, I did not know how we could do this long term. But things are so much better and Noah is getting used to his nightly ritual.
Off to work on my next trip update...gatorland!
We spent the morning at Rehab Center for Children. Our physiotherapist has been trying to get us in there for a while, and there happened to be a cancellation today. Noah saw the new orthopedic doctor to assess his weight bearing issues. His left hip and knee are very, very tight, which is what is keeping Noah from progressing to fully standing on his own. The xrays showed that his hip is slightly out of place, but not enough to do anything about it...the good new is that it's more of a muscle issue. Because it is only on one side, it is very difficult for him to even try and compensate. So the best thing we can do is to work on stretching and positioning. They decided to fit him for a stander...a device in which Noah will be forced to stand and weight bear. Ok, that sounds a bit barbaric...actually, they do look a bit like some barbaric torturing device, but it's really not that bad. It will have a nice tray in front, so basically like a high chair, only he will have to stand rather than sit. I'm thinking this will probably be a challenge to confine him. We will have to think of some fun activities to do when he is in it.
He was also fitted for AFOs (ankle foot orthotics, or braces) to help position his ankles better. This involved casting both of Noah's feet up to his knees to make molds. This was NOT fun. Noah was VERY mad about this procedure and it was quite the wrestling match trying to get these casts on. Wish I'd had my camera...we were quite the sight, with Noah kicking and screaming...plaster EVERYWHERE! So in about 4-6 weeks, we should get the stander and braces. The stander he will spend short periods each day in, and the braces he will wear as much as possible, even for sleeping if he will tolerate them. Just another thing to add to the mix! We did get to pick a custom design for them which was fun...Noah's will be blue with cars, trucks and airplanes on them.
CPAP is going much better. At our appointment last week, we got a different mask to try, which has different pressure points. It fits him so much better and his nose is healing, with no further skin breakdown. We are now getting very little leak in the mask, which means much fewer alarms during the night. The way things were going when we first came home, I did not know how we could do this long term. But things are so much better and Noah is getting used to his nightly ritual.
Off to work on my next trip update...gatorland!
...
Seems like they need some turkey dogs! 
until I realized where she was standing.
