Happy Summer

Mya finished her last week of summer school with phenomenal report. She was so awake and alert for the whole thing, only missing one day to illness. She is vocalizing, smiling and making choices through switches, interacting with the other kids. Her new nurse was thrilled with her progress and personality, falling in love after only 3 weeks. This is by far the best stretch she has had at school and I hope we can carry it into the new year. We have made some changes to her feeding schedule with the addition of overnight nursing during the week; adding a few later feedings but skipping the overnight continuous feed to give her body a break from eating for a few hours. Also, having someone here at night to reposition and respond to her needs seems to help her sleep better. Whatever the combination I hope we can keep it up. I long to see what she can do with consistent opportunities. If we could just figure out a way to keep her out of the fog and healthy I think she would blow us away with her progress in so many areas. Her communication is coming along and I am so exited to see where that could lead. She is showing preferences for types of music, specifically the female artists. She is using switches to consistently turn pages in books even when given other choices. I love that she is getting these kinds of opportunities, with therapists that are picking up on the level of detail in her preferences. I love that we are finding ways for Mya to have a voice and I pray we can find more ways for her to influence her environment. She has so much to say if we can just find a way to listen.

Medically her time at home has been a bit challenging lately, with frequent vomiting, some congestion and a few severe apnea spells. Twice last week I found her gray in the middle of an afternoon nap. She just isn't pulling herself out of the episodes like she would in the past so I am trying to be more consistent with getting her on the monitor when she falls asleep and trying to keep her napping on her side to try and prevent these episodes. Once she starts full day Kindergarten she won't have Bipap to turn to when she drops like that in the afternoon and so I am a little anxious for how that will play out. She officially has scoliosis and kyphosis diagnoses which we suspected for some time. She is not a surgical candidate and so there is little we can do besides try and prevent further progression but I am already noticing more of a lean in her chair even since her latest x-ray. We are also starting to suspect she is outgrowing her current dosages on seizure meds and seeing some new and more frequent seizures. Unfortunately, I also think the fact that she is outgrowing those meds is contributing to her alertness and so we may have some tough calls to make there. She is my beautiful little puzzle. We have a number of appointments coming up yet this summer with specialists we haven't connected with since her last admission and so I am looking forward to their thoughts and plans of attack.