Wednesday, February 1, 2012

Sweet Relief, Happy Surprises, and Why We May Be Taking Up the Rugs

Collin is so, so much better. Giving him water overnight via his feeding pump really allowed us to space things out during the day. I slowly tweaked his meals on a day-to-day basis based on his level of retching, energy levels, and glucose and ketone levels. We haven't seen any retching for over a week now and his strength is bouncing back pretty impressively after such a rough couple of weeks. Photo and/or video proof to follow shortly.

Last week, we had our final meeting with our public school system concerning Collin and his theoretical placement in a preschool classroom when he turns three. (Which is in two weeks. Did I just write that?!) We had heard more than one horror story about this stage in the process - parents being blindsided by the evaluators' recommendations, feeling like the school system did not listen to their concerns or, worse, did not have their child's best interest in mind. So we did a lot of mental and emotional preparation in the hopes of making the meeting a somewhat positive experience, but braced ourselves just in case. The thing was -- it wasn't bad. More than that, it was pleasantly surprising. The therapists' reports (all 50 of them - that's what it felt like, at least) were very insightful and encouraging overall. We didn't feel pressured in any way and when we were offered a spot in the classroom we had had in mind (hypothetically) for Collin, we declined it for the rest of this school year but said we would consider it for the 2012-2013 school year. And we actually meant it. We're even going to go visit the school/classroom in question. Collin still may not go anytime soon, but the fact that we left that meeting even considering it is something I never saw coming.

Then this weekend, we drove to Cincinnati for Collin's quarterly NACD evaluation. The verdict? "Good things are happening across the board." Ah. Music to my ears, especially after the stress and frustration of the past couple of weeks. Collin's program will remain essentially the same for the next quarter because it was changed considerably in December when he started standing and taking steps. The only major change is that Bob Doman thinks it's time for Collin to get a TAOS walker. (Look at how those kids walk before they get in the walker the first time and then after. I DARE you not to get teary or at least smiley.) The first time we ever took Collin to see Bob, he was 11 months old and didn't respond at all to much of anything. During that meeting, Bob told me about the TAOS and told me to watch those videos and dream because he believed Collin would be in one one day. I didn't even dare believe at first. I was more interested in Collin opening his eyes. Then as he started coming out of his own head, meeting the world and interacting with it, I started to feel a twinge of hope. I thought of him as an 8 to 10 year old taking his first steps and felt so excited. Never, ever, would I have imagined that we would be taking this step (heh heh) when he is just turning three. Ah. Maze. Ing.

Speaking of turning three...we have a big couple of weeks coming up here, folks.


  1. I would like to propose a temporary tagline change to Collin the Champ to "Good things are happening across the board."

    Or at least a tshirt ;)

  2. Yay! So so glad you guys are feeling better and so excited about and proud of Collin's accomplishments! :-)

  3. Yay! Collin rocks! You are welcome to come over anytime and check out the TAOS. Kinsley HATES it most days, but it is pretty remarkable!

  4. Annie, I am so, so happy about the school meeting! I think that is awesome that you came away from the meeting feeling that way, that really makes me smile! And I did watch the video of the children in the walker, and I think it is AWESOME! I can't imagine how excited you guys are feeling about the progress! I wanted to tell Collin thank you for his potty training vibes that he rubbed off on Addie, do you know she hasn't had one accident since January 1st? I am still in shock I believe! Also, I just wanted to make sure you got the get well video Austin sent to Collin a week or two back, he has asked me about 100 times! Glad to hear of all the great things happening all around, and glad to hear he is on the mend and doing so much better! thinking of you guys!!

  5. This is fantastic news, Annie! I am so excited for Collin! He is on a roll! DO you have the TAOS yet? If so, does he like it? I am very excited to see Bertrand in his--and not just because my back hurts from supporting his steps. :) Oh and I'll have to pick your brain for potty tips with a hypotonic child when I see you in June? ;)