Wednesday, July 24, 2013
Ellie is absolutely in love with Ms. Kaz, her new speech therapist. So much so, Ellie was distracted and unable to fully participate lol. I like her as well. I'm very satisfied with our first official therapy session with her. Genetics called. Evidently all of Ellie's tests came back negative and clear. No spot growth hormone problems, no thyroid issues, and the Cornelia De Lange was negative. Should be good news, right? *BUZZ* Wrong. The geneticist, the pathologist, and even myself are convinced she still has it. The test is only 60% accurate and only tests 2 markers so there is a very real possibility Ellie still has it, as we all think. Now we have to go back and meet with an expert to see if we need more labs and/or blood drawn. Good times, good times.
Saturday, July 20, 2013
We upgraded Ellie to a used toddler bed from Craigslist. At first she loved it but then went back to sleeping behind the door. *sigh* Yesterday we spent 4 hours in clinic. It's a long story but the short version is that Ellie's perfectly fine. Here's the long version. The appointment was scheduled for 9:10 a.m. and Atlanta traffic is extremely fickle so we left around 8 a.m. We made it there by 8:45. I remarked to Cheryl, the lovely receptionist I always talk with, how it was going to be a long day since we were here for clinic and not our usual speech therapy. The woman behind me remarked that clinic isn't so bad and it would be fine. I told her that had never been my experience at CHoA with clinic. The waiting area began to get overcrowded with people sitting on the floor, backs against the wall, and just standing around. Sure enough, a PA comes out stating that the surgeon, our surgeon with whom we were scheduled to meet, was in surgery running at least 30 minutes behind. All rooms were currently full, but once he arrives and rooms began to empty they would begin bringing people back again. *sigh* That meant it was truly going to be another clinic day- an all day annoyance where various people poked and prodded my tired toddler who had an annoyed and tired mommy. We got weight & height checked and then sent back to the waiting room. Ellie made a new boyfriend named Liam. His whole family was funny and wonderful, so I offered my email since they live in the next town over (Snellville). We finally got a room and waited. The dentist stuck his head in to say he'd clean her teeth last since kids tend not to enjoy that process. So we waited and waited and waited. I turned on the TV but Ellie wasn't terribly interested in it. All she wanted to do was slam the door and push the phone buttons. Finally the speech pathologist and the new speech therapist (not that stupid girl we got last time) came to evaluate her. They felt she was on track (for her, not for regular 3 year olds). The new speech therapist did a pretty good job of getting Ellie to repeat some words. Ellie had kept her hands in her mouth (along with trying to eat the chair and the window sill). Between being tired, sucking on her hand, eating foreign objects and having a hoarse voice because of her cold, I think she did great. The surgeon came in. Ellie wouldn't open her mouth for him and he said if she's not snoring and talking fine, then she's fine. We can come back in a year. He left, Ellie set off the emergency alarm for the room. Finally it was the dentist's turn. Ellie did amazing! She was unhappy but no tears and would repeat "AH!" when the hygienist or I asked her to do so. Her teeth, while crowded, looked amazing. She did so well, in fact, she got TWO prizes AND a new toothbrush. Even the hygienist said to call daddy and tell him what a good girl she was. Nearly everyone asked about the genetic testing, and I explained that we were still waiting so I imagine the geneticist is going to have several emails from people asking about it- the speech pathologist, the surgeon, the dentist....