Tuesday, July 30, 2013

Testing, testing

Elin turned 1 and the flood gates of testing burst- poor girl. She spent her birthday day at Children's too in a hearing loss clinic. Here's the update:

During the hearing loss clinic we attempted another behavioral hearing test and Elin couldn't do it yet. Again- going into the clinic I knew they were going to attempt the test and was 99% sure she wouldn't be ready to be conditioned. She just isn't developmentally ready for it yet. It didn't help that she was 2 hours past her normal nap time, sleepy, cranky and hungry. Needless to say it was over quickly and we move onto a non-sedated BAER this week. 

I met with the geneticist again and found out what tests had been completed. I was interested to find out what tests we would be attempting next. Unfortunately there seemed to be some sort of miscommunication within the genetics department and I am still waiting for that answer. Hopefully we will be delving more into the neurogenetic realm now since we have eliminated many "normal" causes of genetic hearing loss. 

Elin had her 1 year check up with our pediatrician and had two shots last Friday. This was the same day we had her little birthday party with the grandparents. She was a mess from the shots and didn't make a very happy birthday girl . That's what I get for having her party the same day I guess. She got a good nights sleep and was back to normal the next day. 

Onto this week. We had a pre-op appointment with her ophthalmologist on Monday and her eye surgery is scheduled for Thursday. We have to be at Children's at 6:30am which is good since Elin can't eat anything in the morning. It should be a quick surgery with her out of the hospital mid day. The surgery itself is very routine and shouldn't cause much discomfort afterward. It is the sedation part that makes everyone nervous. Please send all your positive mojo our direction this week- we need happy healthy thoughts for a speedy operation and quick return to normalcy. 

Today- we went to Children's and Elin had an EEG. This was at 8am which was a terrific time because she needed to fall asleep for it. I was skeptical about her really being able to sleep on command but she cried so hard when they attached all the stuff to her head that she passed out on me and the test went perfectly. We will get the results later and I will pass on the news at that time. At least I know they captured a good chunk of her brain activity while she was asleep which is exactly what they were looking for. 

Finally- on Friday this week Elin has a non-sedated BAER (brainstem auditory evoked response). I tried to orchestrate the BAER test while she is sedated for the eye surgery but it was too last minute and an Audiologist is not available. Major bummer. This is the same test she had when she was 2 months old and her hearing has not been tested since. The kicker is she has to sleep for it. If memory serves- she had to return for 3 visits to get the whole data set AS AN INFANT because she wouldn't sleep long enough. Our goal (which is lofty and almost asinine) is to have her fall asleep at 1 on Friday for an hour and a half and test her the entire time. Hmmmm- we shall see how this goes.
 So I can't wait until this week is over and hopefully we will be a few steps closer to a better picture inside her sweet little head. 

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