Elin gets an A+

The week of testing is officially over. She slept for her EEG, she slept for her BAER and she didn't have any seizures under sedation and her eye surgery was a success (so far).
It was an early morning to make to Children's by 6:30 am to check in for surgery. Everything went smoothly, she was sedated successfully without incident and the surgery itself took about 45 minutes. We were able to leave by 11 with a tired but calm baby. Here eyes are red on the inside corners and will stay that way for two weeks or so as they gradually heal. Our ophthalmologist likened it to a bruise that takes time to heal. She was cranky and uncomfortable the remainder of the day on Thursday but it was nothing a little Motrin and some good naps couldn't help. Her eyes look amazing! It was surreal to have her open her eyes and look up at me for the first time after she came out of surgery. It was like looking at another baby almost. We are hoping that this one surgery does the trick. 80% of the time one surgery is all it takes to adjust the problem. BUT kids with multiple disabilities are at an increased risk for multiple surgeries. At about the 6 week post-op mark we will have a pretty good idea whether she will be good to go or might need additional surgery down the road. Right now we are happy the surgery worked as far as we can tell and it went very smooth.
The following day Elin had her BAER hearing test. I successfully sleep deprived her and she slept for the hour and half they needed to get the results. This is an amazing feat considering the girl wakes up when I walk down the hall most the time and the audiologist was messing with ear buds in her ears and loud sounds were being played. Unfortunately the results were less then stellar. Elin's hearing loss has progressed- (meaning it got worse) in both ears. We aren't ruling out the possibility of fluid in her inner ear causing some of the drop but we aren't sure if that is the cause. This is another blow to us. We really thought Elin's hearing was the same if not better then originally predicted given her uncanny ability to hear everything when her aids are out. I guess she really does tap into those other senses more then we can fathom. At this point we are applying for candidacy for a cochlear implant. We don't know if her hearing loss is severe enough yet but if it continues to drop we will be looking at options beyond hearing aids to assist her.

This week we had our last visit from our speech and hearing specialist through Listen and Talk- Rebecca. She has been with us since Elin was first diagnosed with hearing loss and we will miss her. We have a new speech pathologist thought and she seems to be just good with Elin and equally educated so we are being transferred to good hands. Also our physical therapist had her baby and we are being assigned a new PT this week. Lots of change to deal with and it's tough since we have gotten to know these people quite intimately over the last 6-9 months.
I spoke to the neuro geneticist today and we are moving ahead with a SNP array genetic test. I would try to explain it but it is super confusing and complicated. Basically we can have three results- one tells us her genes look normal, one tells us there is definitely a gene abnormality and it is most likely the cause of her issues, or there are a few small abnormalities and Myles and I get tested to see if we have them too or if they are unique to Elin indicating they might be the cause of her issues. We have to get insurance pre-approval which can be tricky for genetic testing and then move forward. Most likely we won't have any answers for at lease two months.

During our week of interminable testing Anya was happily attending ballet camp for four hours every morning. She had a wonderful time and loves to show off her pirouettes and arabesques to anyone that asks. She got to wear a pink leotard, pink tights, pink ballet shoes and a tutu everyday. The theme was Cinderella and they danced, did art projects, and got to watch ballet videos.  I swear it was her dream come true.