Always knew she was an angel

I hesitate to write this since we aren't for sure, but I think that Paul and I diagnosed Delaney last night. For 3 1/2 years now we have been searching for a label to what has been holding Delaney back and no one has been able to find that answer. Until now. I really think we found it. I was going through a humungo file of her medical records last night because I needed some info for the application we're filling out for her talking device and I came across a report from a genetic doctor that we took her to about a year ago. I read through it, happy to recognize all of the progress that she's made over the past year, but in the section where she indicated some different syndromes that she was going to test for I saw Angelman Syndrome. I read it out loud to Paul and neither of us knew what it was and don't remember seeing this in the report before. Without knowing it, both of us looked it up on our laptops and at the same moment said "Oh my gosh, this is Delaney." I feel like time literally stood still for a few minutes. It's like someone had written a description of our daughter:

-Severe developmental delay
-Minimal use of words or nonverbal; receptive skills higher than expressive skills
-Movement or balance disorder including, wide based gait with feet turned outward, and uncoordinated movements
-Behavioral uniqueness such as frequent laughter or smiling, happy demeanor, easily excitable often with hand flapping movements
-short attention span
-Microcephaly (small head)
-Feeding problems in infancy
-Hypopigmented skin and eyes (maybe that's why her eyes are SOOOO blue and beautiful)
-Uplifted arms when walking
-Wide mouth/wide spaced teeth
-Protruding tongue and frequent drooling
-Excessive chewing/mouthing behaviors

And if that wasn't enough to sell us....
-Fascination with water, photographs, and television

She's lacking the seizures that usually appear between the ages of 2 and 3, but I'm so hoping that she's part of the 20% tht won't get this aspect. I really don't know how to feel about all this. It's all so overwhelming because of this fact that I read over and over...there is no cure. It isn't likely that she's going to catch up one day like I've been hoping. Having her involved in therapy is all that we can do and we've been doing that since very early on. My heart is still broken even though she hasn't officially been diagnosed. I know this is the answer that we've been looking for. What's really ironic is that we have an appmt with a neurologist this Friday and have had it scheduled for months now. I believe there is bloodwork that can be done to confirm this. I'll keep you posted on what we hear Friday.