We were in to see PT a few weeks ago to have Kaitlyn's legs casted so a mold could be built to make Kaitlyn a pair of AFO's. Well they called us back and said that they didn't feel that AFO's were going to do anything for her. They also felt that her feet were too far out of neutral position (the bottoms of her feet were starting to turn up while the toes were pointing down). PT figured that she would never be able to stay in a pair of AFO's. Their suggestion was to put Kaitlyn through another surgery to have the tendons released.
Tim and I had a hard time with this decision for some reason! I think that we were both afraid to have to put her through ANYTHING else too invasive! But in the end we both felt that surgery might be a little in the extreme if serial casting could be tried first. PT is really doubtful that serial casts will give us the stretch that we need, but we just couldn't justify doing surgery before we tried. They have humoured us and the first set of casts were placed last Thursday. She will go in next Thursday to have the next set placed. We know some children with SMA that have had serial casting done in the past and have had good success with it! Sometimes it has to be redone in time as even with regular stretching the tendons can still get tight. This is a risk we would rather take than to have to put that poor girl through any more surgeries or pain!
While serial casting can be painful it hasn't been for Kaitlyn so far. Sometimes she fusses a bit at them, but more like she just wants them off or that she's tired of the new game we're playing! She is still doing all the same things she did before we had them put on. She can still swing her legs around in her slings. We still bath her, but we have to be extra careful not to get the casts wet. We tie her casts together (this makes them too heavy for her to lift or slide) then we place her legs up on a low stool in the tub. She can't make her frog legs anymore and squeeze her legs open and shut and lift her hip off of the bottom of the tub. But at least she can still get a nice warm bath, move her arms a bit and splash! The warm water is so good for her too before bed. it really helps get her lungs nice and clear before going to sleep.
On another note it would seem that taking Kaitlyn off of the Enoxaparin injections for her blood clotting condition has also gotten rid of her increased thickened secretions that she's had all Fall. I read something about Enoxaparin causing hayfever symptoms. This is SOOO nice for us. She doesn't need constant suctioning like she did. She can spit out most of the saliva now. She still requires constant observation and frequent suctioning, but not like before. When we have something to sit her in she should tolerate sitting up for longer periods now. She is back to her old games of bouncing on the edge of the bed on somebody's shoulder (this never gets old!!!), from the edge of the bed we then rock back and fall onto the bed (followed by hahahahaha), blanket pulls through the house (huge grins), and lots of other rough-housing games. She hasn't been able to partake in these activities as she would choke on saliva and we were forced to run for the cough assist, and/or more suctioning. We had to stop playing all her favorite games. The girls a rough-neck, and I have NO doubt would have been a severe tom boy!!!
After rough-housing on the bed. Kaitlyn's cheek is red from being on a shoulder. She gets red easy! I cannot believe how big Kaitlyn is getting!! It seems like she should look a lot smaller next to her big brother!
Enjoy this pic!!!! I don't often get all three still at once. This took a bit of doing to keep Alexander in one place long enough to capture a pic!
Turns out he just wanted to kiss his Sissy!! AWE! The boys can't go anywhere near her without stopping for a quick snuggle or mooch!