Hello and welcome. My name is Kaitlyn Anne and I have Spinal Muscular Atrophy Type 1. Children born with SMA 1 gradually lose strength in their nervous systems and die, usually by the age of two. There is no known cure or long-term treatment. SMA not only affects the muscles that help me move, but it also affects those that allow me to breathe, swallow and clear my airway.
Thursday, January 15, 2009
Second Casting Appointment
We took Kaitlyn's first set of casts off Wednesday night before her bath. They are the soft form of casts...NOT plaster casts. Hers were made of fibreglass. They are very light-weight. Anyway, we were really hoping that she didn't have any breakdown, but alas! She has pretty severe bruising on both her heels. More on the right side. I'll put some pics at the bottom, but don't look if this sort of thing bothers you!!! Let me tell you that the bruising doesn't bother her at all! I can rub my finger across the breakdown and she doesn't even wince. Let me remind everyone too that Kaitlyn has perfect sensation.
She is such a trooper. She didn't mind having the casts at all. She could still lift her knees to center and squeeze them open and shut. She could still use her slings and is probably what saved her heels from completely breaking through! We have decided not to recast today, but rather wait until next week and recast then, if her heels look better.
So fa the gain from even one casting was HUGE! SOOOO worth having it done. She went from a -25 degrees on the right foot to zero, and she went from -30 degrees on the left foot to a -7!!!! Zero degrees is a 90 degree bend, the negative side of this is when the toes point away from the body. I thought this was pretty good. The other awesome part is that her feet are in better alignment and her toes are no longer curled down and to the side. I’m really happy so far!!!
We should be able to maintain what we've gained with proper physio over the next week, and hopefully we'll be able to recast again next week. If everything goes as well with the second casting then it may only take one more casting. Then we get temporary splints while we have AFO's made. (Ankle foot orthosis).