But we’re back, for reals this time.
First things first, Monkey’s hand is almost entirely healed. There were a few really gross days of lots of peeling skin but he’s much better now. It never really seemed to bother him after that first day, I guess that high pain tolerance comes in handy for some things.
For those of you who are friends with me on Facebook you know we spent last week in Madison, WI taking part in a research study at the Waisman Center. I am not sure what to say about it really. It was the first time we’ve ever taken part in one and it was really hard on Monkey. Really, really hard.
He enjoyed the plane trip, he enjoyed the hotel pool, he enjoyed the sightseeing but he did not especially enjoy the various evaluations. I did not especially enjoy my part in the evaluations (4.5 hour autism interview…videotaped! Argh!) The researchers were very nice and they tried very hard to make it as fun as possible for him but it was all too much. Being away from home, having to sit in a room with strangers for hours and take tests…blah.
To end the trip they wanted a blood sample. I had a nightmare, the night before, about what would happen and woke up in a cold sweat. For the first time in my life the actual experience was as bad as the nightmare. They only got 1/2 of what they wanted before I burst through the doors like a … I would say mama bear but that understates my reaction and demeanor by a long shot. People were scared and they were right to be. Generally, when I lose my temper I feel apologetic and slightly embarassed by it once I calm down but I will not ever apologize and I don’t feel the least bit bad about it. I only regret that I didn’t get there faster.
**OK** putting that behind me now, I hope. Tonight I’ll get the pictures off the camera and share the better parts of the trip! I also need to put together a language update b/c this kid is really talking now! He said his first complete sentance while we were in Madison! “Iwangohome!” All I could say was, “Me too, buddy. Me too!”
I’m glad to hear his hand is healing; I had missed the previous post.
GREAT communication!!! Poor little guy having to go through that, especially the blood work…ugh
Glad to have you back. I am sure you had a tremendously hard week and I am sure you are all happy to be back in your own environment. It was quite the challenge for all of you and especially Monkey whereas he does not realize why he was doing all of these tests. Great thing about children ” they bounce back better than adults “.
Glad to hear Monkey’s hand is better. Poor little guy having to have the blood work for the study. It was awful when we did that at the MIND.
Yeah, our child study in California was not great for Ian. Only it started on the plane ride. And the airports…..ARGH! They also did an MRI and put Ian out for it. He woke up HORRIBLY!!!!! We had committed to a 2 year study, so we followed through with that….just as bad, only we had 3 kids instead of 2 (thank goodness for friends and relatives coming along to help!). So, Jim decided NEVER AGAIN! It’s tough cause as FX’rs, we want to do all we can to help. But to watch our kiddos go through that….HARD. GREAT to hear about the vocabulary. Can you attribute it to anything in particular? Glad to hear he’s healing too.
We will do the second visit in 18 months, we do want to help as much as we can…blood draws are just not an option again for a while. I’m not sure when I’ll be OK with it again, really. I can understand that it’s necessary for medical trials but that’s not what we signed up for and I am not sure I will sign up for them even when Monkey is old enough. Conflicted!!
I have no idea what has started this language explosion. We noticed that he was picking up a lot of words starting late last fall and we attributed that to the folic acid therapy since it started right about the time we were told we’d see improvements if there were going to be improvements. It is now coming at an even greater rate. He says new words on a daily basis now…very exciting.