Okay…yesterday’s post was a bit of a downer, so I thought I’d share some good stuff. First of all, thank you to everyone who reached out with stories to make me feel better about Connor. He decided to cheer us up the next day by being much more engaged with playing while sitting. I think a few things just came together in the last week that caused us to bum that night. One was that his physical therapist expressed concern that he’s not as engaged with his toys in a sitting position. Honestly, I’m not sure what to think about that. If he’s lying down or in his bouncy chair he’ll bang the suspended toys around for hours, so it’s not like he doesn’t play. Once a toy is in his hand while sitting he can develop a death grip that likely matches Charlton Heston’s around his gun collection. But he tends to need a little prodding to reach out and grab his toys when sitting up in a chair. That day we were upset, he was particularly disinterested in doing so. The next day he was far more cooperative.
Another piece to the puzzle was that Connor went in for a followup hearing test. His hearing is perfectly fine, but when they did the part that tests his cognitive response to sound, meaning checking to see if he would turn and seek the sources, he didn’t do so hot. He didn’t seem particularly interested in seeking out where the noises were originating from. The thing is, Connor never does as well with this stuff with people he doesn’t know well. I’m not saying he isn’t somewhat behind, but I think he does far better with us than in a testing situation with total strangers. I couldn’t help but notice that afternoon, when he tagged along with me to the salon, that his head was turning all the time. He was between two stations, and the blowdryer would come on to the right–TURN. My stylist starts to talk to his left–TURN.
Then this morning was very exciting. Connor has never showed a whole heck of a lot of interest in rolling over. This was of slightly less concern to me because I’ve had many people with chunky babies tell me their kids didn’t care to do so either. He has previously rolled over from front to back before, but him doing so required that his arms happen to be in an awkward position that lent to him doing it. He wasn’t repositioning his arms to make it happen. If they weren’t already where they need to be, he didn’t bother. This morning, when Chris went to get him out of the crib, he decided to put Connor on his stomach. Connor reached out with an arm bent at a 90 degree angle and pushed himself back over. Then he did it three more times! This is so exciting! He was truly making the effort to find a position to turn himself without waiting for us to position his arms for him.
So moods are elevated in the house again.
But this wouldn’t be my blog if I didn’t complain about something, so…that EEG paperwork? Still don’t have it. Today is day #4.
I’m very excited about a trip I’ll be making in February to Washington D.C. I’ll be tagging along with Wendi Scheck and some other ladies of the North Georgia TS Alliance for the annual March on Capitol Hill. We will be joining the headquarters of the TS Alliance, as well as people from all over the country to meet with senators and representatives and advocate for federal funding for TSC research. And mark your calendars, Atlanta peepz. The 2013 Step Forward for the Cure is taking place on Saturday May 18. We had a huge team last year, and everyone is welcome back again, as well as anyone new who would like to join us. There is no minimum to raise and I will post when the online sign up is ready. We raised over $6,000 last year!
For my readers who aren’t local, but are interested in taking part in a walk, here are the other walks (and other events) that have been scheduled thus far:
Jan. 26- Singing for a Cure at Paddy Whacks Pub, Philadelphia, PA
April 7-Comedy for a Cure at Lure, Hollywood, CA
April 27- Mountain Brook, AL Walk
April 27-Scottsdale, AZ Walk
May 4-Houston, TX Walk
May 18-Chicago, IL Walk
May 18-Atlanta, Ga Walk
May 18-Long Beach, CA Walk
June 1-Noblesville, IN Walk
June 22-Washington DC Walk
Oct. 5-Des Moines, IA Walk
Orphan Drug Act
- Sequester will have a devastating impact on America’s research enterprise (eurekalert.org)
- Drug shrinks brain tumors in children with tuberous sclerosis complex, study suggests (sciencedaily.com)
- Novartis Cancer Drug Gets Another EU OK (dailyfinance.com)