Sunday, September 19, 2010

A Waiting Game...Again...



Well, it seems we are apparently not in the "clear" with the muscle biopsy...yet.


After multiple phone calls with both our Neurologist and his nurse last week, we are in a holding pattern again. Kendall's muscle biopsy pathology report came back normal (with the exception of the Type 1 Muscle Fiber Atrophy.) Apparently the enzyme testings were not sent where they were supposed to be right away. So, yesterday they were sent out again. And we will have more specific results based on those results in around two weeks.
Kendall and I spent Friday morning at the zoo with our friends Aileen and her son Reece, and Holly and Caleigh. We bought zoo passes so we can return again this fall whenever we want. Kendall is pretty opinionated on the animals she likes. Fish and birds are in the lead, while anything that has fur and is bigger than her she turns her nose up at. For obvious reasons, we didn't even attempt to visit the horses at the zoo!
Friday afternoon she was pretty fussy. But she and I had a big break through. Her communication with the iPad is going well, but she definitely prefers the guessing game instead. (That is where I guess what's wrong and she answers me with a smile, a nod yes, or a firm "uh uh" for no.) I put her in her swing because she told me on the iPad that's what she wanted to do. After about 2 minutes, she was saying no, so I took her out. Then she pointed (with her pointer finger) at the stuffed animal. She wanted to push Tigger in the swing. So we did. She laughed, until it was boring...then I suggested we take him out and put her baby in the swing. She enthusiastically nodded yes...so we looked for baby. She was on the supply shelf in the corner of the room. I knew that, but we walked around the room looking for her. Under the bed, under the covers, in the closet. Then, I walked by the shelf and Kendall started squealing, and reached out to grab the baby. My heart sang!
So, no matter what those results say about her having Mito, I have to keep myself in the mindset I had on Friday before the call from the Dr. Kendall's health hasn't been declining, and her development has been soaring! I need to live in the now. (for Kendall's benefit and mine!)

4 comments:

Cjengo said...

I am so impressed with the communication that Kendall and Caleigh are giving via their ipads. I would love to have dinner one night so we can discuss more. Would you guys be willing to come over if I cook?

jocalyn said...

sure, but you should read holly's latest post about communication...she re-capped the entire journey...including links that go back to the very beginning with her speech therapy. there are videos and a ton of information :)

Val said...

Love the headband! look at those curls, so stinkin' cute! The communication development is exciting too.

Barbara said...

So fun to read your story of how she communicates!