Thursday, February 16, 2012

Two Years

This is the third important day in a row. After this, we're taking a break from days of significance.

Two years ago today, we drove to Cincinnati Children's Hospital in a snow storm for an unrelated appointment and ended up having the chance to initiate the ketogenic diet on the spur of the moment.

It was not an immediate miracle for us. I had read all of the stories about kids who had stopped seizing immediately and started walking or talking on the second or third day. It was a dangerous kind of hope that I thankfully didn't allow myself. We were only looking for some seizure control, which would allow us to wean some seizure meds. And it's a good thing I wasn't expecting a miracle, because Collin spent our whole stay in the hospital either seizing or passed out from meds. His tummy was a wreck from the ketogenic formula after spending his whole life on breast milk and he was painfully constipated. By the time we left the hospital, he was still seizing and was on more medicines than he had come in on. Talk about discouraging.

Most doctors told us that we would know within a couple of weeks whether or not the diet was going to work for Collin. Thankfully, we didn't listen and stuck it out. You know the story by now.

The general rule of thumb is that after two years of seizure control, it's time to start talking about weaning off the diet. For us, that would mean June if things continue as they are. We're in no hurry to wean, though.

In fact, the diet is so much a part of our lives now that I usually don't even think about what a colossal pain it is. And then when I do think about what a colossal pain it is, I look at Collin, laughing or standing or using his vision, and I keep my mouth shut.

Wednesday, February 15, 2012


Today we're celebrating and thanking God for one more red-letter year with the person who has made our lives infinitely more complex and beautiful.

Tuesday, February 14, 2012

Graduation Day

Today was Collin's last day in First Steps, our Early Intervention Program. It feels like the end of an era, and here is our tribute.

Monday, February 6, 2012

The Big Head

I'm worried that Collin is going to get the big head over all of his awesome feedback recently. Well, not really. Ego isn't one of his weaknesses.

Last Thursday, we visited Collin's geneticist-slash-neurodevelopmental-pediatrician. (We're in doctor season right now.) He confirmed that in addition to increased strength, Collin's muscle tone has improved significantly (strength can be built with exercise, but tone is neurological). He was impressed with Collin's increased use of his vision, commented on how alert and interactive he seems, and summed up by saying, "He looks better every time I see him."

Speaking of the big head, though, it got a big boy haircut this weekend. People who are turning three in the near future need to look the part.

This is his Blue Steel look.

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.