Appt with Dr Williams

Lydia saw Dr Williams (Opthamologist) this morning. She thought her tracking looked a little better than last time. She also diluted her eyes again to look for some type of pigmentation in the back of her eyes. She did find one little patch of pigmentation in one eye. From what I understand, this will not affect her eyesight at all and may not even mean anything. She said that with some mitochondrial disorders, kids will have some type of pigmentation...but usually covers the whole eye....not just one patch. Basically, usually this would just be a sign to get other things checked out...she said that mitochondrial disorders are not usually diagnosed in infancy, so this pigmentation might be a sign that a child needs to be tested for disorders. We, of course, are already in the process of testing so the pigmentation doesn't really mean anything to us right now. She wants to see her again in four months.

We also saw Susan (PT) this morning. Lydia did very well...lots of smiles...she tolerated therapy for a long time. Susan found that she spends a lot of time loosening Lydia's muscles when we start each therapy session because she is usually tense...then she has to stimulate her to use her muscles because once she gets her to relax, Lydia turns to mush. Today was a make-up session from last week, so we'll see her again on Thursday. We will soon be ordering some braces? (not sure exactly what they're called) for Lydia's feet...trying to get her feet to keep from turning out and hopefully also help to hold her big toes stay down. I had told Susan that I remember when Lydia was in the hospital last time...she had an IV in her foot, so her whole foot was taped up. Shortly after the IV was taken out, I noticed that her big toe on that foot didn't look as significantly turned up as before. I'm thinking that these new braces may have the same effectd...that's an easy-enough fix, if it helps. A few weeks ago, when Susan first introduced the idea of getting the braces for her feet, we talked about the importance of looking "cute." It is not something I had ever considered, and I kind of dismissed it at first...but, after I thought about what Susan was telling me, it started to make some sense. She said that no matter how significant the disability...even if a child is in a wheelchair, if they look cute...well-dressed, well-groomed, wearing a smile...they will get more positive attention than if they don't "look cute." And the more positive attention that they get from other people, the more social interaction they'll have...the better their quality of life will be. I'll definitely keep that in mind. It's funny...she seems like a little celebrity right now...especially when we go to Brusly. We went to watch a ball game this past weekend in Brusly, and it seemed like almost everyone there knew who she was and a little about her story...a lot of people gave her lots of attention. I told her, "I think you're a little star!"

Tomorrow, we see Dr Wood to recheck her ears...I think they'll be fine...she's been so content lately. We will also see Teresa (OT). Hopefully, she'll be in a good mood for that too. :)