Feeling Better Again

Kaitlyn has been feeling much better the past two days! We are back to normal bi-pap times and secretions are much more manageable. I can finally carry her around on my shoulder again and boy is she taking advantage!!!

Kaitlyn goes to get her TLSO tomorrow. A TLSO is a body brace (like a rigid corset) that hugs Kaitlyn's torso so that she will be able to sit up without slumping all over!! It should help make it easier for Kaitlyn to breathe and make positioning her easier. It will help us keep Kaitlyn's back straight to avoid or prolong any surgeries to correct displacement in the spine! Currently Kaitlyn has NO noticeable curvature of her spine :) Our OT/PT is finally convinced that she needs the additional support when they tried her in the new floor sitter they are having made for her! She just collapsed into the seating...they have never dealt with a child with such low tone before! We are all learning as we go.

We are also trialing a couple of options for drive controls for a powerchair tomorrow. One is the mini proportional joystick. Kaitlyn hasn't done extremely well with this joystick :( They have left it so long that now she has lost almost all function in her little hands :((( The second option we are trialling is fibre optics :) The fibre optics are little pinpoint sensors that can be placed anywhere that Kaitlyn has predictable movement. The biggest problem with driving a powerchair like this is that it could take a LOT longer to learn.

The biggest problem by far is not having a proper chair for Kaitlyn to trial this sensitive equipment. They are having a really hard time figuring out how to position Kaitlyn's hands to give her the best function to be able to access the drive controls! Wish us luck that we can figure this all out. I am getting really tired of listening to Kaitlyn cry everytime Alex or Owen gets up and leaves the room and she cannot follow!