Frustration

After two busy days at BC Children's this week I was feeling so frustrated. First off Layla had an EEG and it did not go well. She cried through the whole process of getting all the electrodes attached to her scalp, and then fought sleep for an hour and forty five minutes.. only to find out that we could've given her a sedative when they first asked me to put her to sleep... even though I mentioned to them that the only way we get her to go to sleep at night is with a sedative! Urg! Then within 10 minutes of getting her to sleep they asked me to wake her! Those drugs are liquid gold. What a waste. On top of that the results showed nothing. They were suspecting that she was possibly having seizures but it came back clear. Which is a good thing. 

I just feel like we haven't learned anything new about Layla since we left Ontario in August. I'm listening to the Neurologist and the Biochemical Diseases specialist tell me that they want to redo the exact same tests we performed 6 months ago at London Children's. I don't know if they don't trust the doctors out there or what? The one thing that did make sense is that they mentioned that they wouldn't really get any new information doing another MRI before Layla turns two. I guess the brain just changes so much in the first two years of life that it really wouldn't be much help and would not point towards any specific diseases because it didn't before (other than underdevelopment). So alas, we wait. That was one thing I really wanted to happen soon. If I could just know, if it's getting worse, staying the same or getting better I might be able to have some sense of certainty. Something that would tell me what direction Layla is going. Then I am reminded of what one of Layla's specialists in Ontario told me multiple time. "What is more important than a diagnosis is her quality of life." I know that is true. But i'm just so determined. Perhaps too determined. This transition from different provinces has been harder than I had hoped. I so badly wanted it to be seamless and boy did I work my butt off with phone calls, mail and emails to try and make it that way but it's been far from it.
I just received an email that Biochemical Diseases wants to bring Layla in to the day unit again in December. They are going to run blood tests before and after feeds.. again. But this time she is doing a very specific metabolic test. I quote "The Dr. is trying to find a diagnosis for her.." Well I'm glad I'm not the only one!