Sunday, October 24, 2010

Grand Slam

Wednesday night, Collin went trick-or-treating at the Zoo Halloween Party and dressed up as a baseball player. His costume was a huge hit and he really enjoyed the whole experience. When we were filming our traditional State of the Candy address, we took a minute to recreate Collin's favorite part of the night.

Halloween Disco from Annie Kratzsch on Vimeo.

On Overdoing It

This week taught me that I still have a lot to learn about maintaining a feasible schedule in our home. Aside from three doctors appointments for me, having friends over to our house, and the typical everyday paperwork, phone calls, ketogenic diet preparation, therapy work, and the fact that he (and, therefore, Mama) was sleeping very poorly, here is what Collin's week looked like:

Monday: Collin did a great job in his vital stim therapy and showed signs of faster swallowing. He still has coordination issues that make him freak out whenever a spoon or bottle enters his mouth. He also spent time with his new speech therapist for the first time, who will be working on feeding and language with Collin. She proposed some new strategies - mainly to support and strengthen Collin's respiratory muscles - and was very helpful and encouraging about our struggle to teach Collin to eat.

Tuesday: We visited Cincinnati for Collin's quarterly NACD evaluation. Bob Doman was once again pleased with Collin's improvements, particularly his quick responses and interaction. I haven't had time to sit down and look through our new program in detail yet, but it looks like it includes a few new activities to support feeding, cause and effect, and rolling.

Wednesday: A great session with Collin's OT confirmed our decision to focus on his respiratory muscles for a while and then a marathon poop session kept us home from play group. That night, Collin went trick-or-treating with his cousin Ila at the Zoo Halloween Party. More on this later.

Thursday: Collin's chiropractor and cranio sacral therapist both had great sessions with Collin and gave us even more ways to support his respiratory muscles, including exercises and taping methods (think athletic tape). He went straight to aquatherapy, where he wowed the crowd with incredible head control, kicking, trunk control, and especially his ability to follow verbal commands. We're really working on 'yes' and 'no' with Collin in the water, as well as starting to make choices.

Friday: This is the day that broke me in terms of stress. We were lucky to get moved up by more than a month for Collin's growth hormone stimulation test. It was explained to me as an easy test that would take a few hours, so I should bring something to read because it might be boring. Ha. Ha ha. For the sake of your stress level and mine, I won't relay all of the gory details, but Collin basically complicated every aspect of the test with his practically-impossible veins and his ketogenic diet. The test is a very precise one that requires blood samples and drug administration at very specific times and the nurses had trouble handling all of the complications. The result involved a squeezed and meddled-with but useless IV line, five pricked and squeezed fingers, multiple last minute calls to the endocrinologist, and ultimately a Collin who was so scared and in pain and worked up that he was rigid with unconsolable screaming and crying. This from a kid who stopped crying at four months old and has only recently started crying a bit when he's uncomfortable. The whole experience was unnerving at the least and slightly traumatic at the worst. Then, in my infinite wisdom, I had scheduled an ENT consult for the afternoon, thinking that our morning test would be so easy. It was a fairly uneventful visit aside from the fact that Collin still hadn't recovered from that morning. I liked the doctor and we decided that the best thing is to leave his tonsils and adenoids alone for now and see what happens in the next six months.

So. Lots of good things, new things, helpful things. Some bad things. But generally just way too many things. Every once in a while, I think I forget the whole sprint versus marathon analogy and end up having to temporarily stop the race altogether while I sit by the road recovering and trying not to throw up from over exertion.

Friday, October 15, 2010

Baby Einstein

I take back all the snooty things I ever said about Baby Einstein.

Baby Beethoven from Annie Kratzsch on Vimeo.

Sunday, October 10, 2010

Behind

So, what happens is this:

We have a few busy days -- lots of appointments, phone calls, new developments -- and either I'm exhausted or processing or whathaveyou, so I put off posting about it. But then another few days just like the first few happen and by that point, even if I'm not exhausted, I'm overwhelmed by how much I have to explain, so I put it off some more. And weeks go by and I have people contacting me asking if something's wrong.

In lieu of a detailed explanation, allow me to sum up and get us more or less caught up.

1. Sleep: Collin has started oxygen at night and during his naps if we're at home. It seems to have made a pretty big difference in his sleep overall, though it still takes him quite a while to get to sleep most nights. We had a debacle involving Dr. Snarky wanting to put Collin on caffeine citrate for his periodic breathing. It definitely fixed the issue, but it did it by never letting him fall asleep. As in, all night. Imagine a 19-month old on a double shot espresso. It took us three days to get him back to normal. Next step is to do another sleep study in a couple of weeks. Gag.

2. Ketones: We wrestled with Collin's ketones for weeks, sometimes having to bring them down with juice three times a day to get him to snap out of his high-ketone daze. Finally, after calls and emails to 2 neurologists, 3 dieticians, and numerous other keto parents, we pieced together bits of information and cut his carnitine in half for a few days and everything righted itself. And I will take this opportunity to quietly point out that I KNEW IT. The spreadsheet doesn't lie, people. (I really will remember to post on Collin's massive health spreadsheet one of these days.)

3. Michelle P Help: Our two Michelle P helpers have been working for 3 weeks now and we're all getting more used to the arrangement. They are both so wonderful with Collin and love him. Collin gets to go through his NACD program even more than normal and I am feeling less like I'm fighting a losing battle against paperwork and our house.

4. Development: This section is also known as the land of capital letters. COLLIN PICKED UP HIS HEAD WHILE LAYING ON HIS TUMMY FOR THE FIRST TIME. COLLIN TOUCHED SOMEONE'S FACE ON COMAND TWICE. COLLIN IS SOMEWHAT CONSISTENTLY LOOKING FOR KYLE AND I WHEN WE SPEAK. COLLIN IS MAKING NEW SOUNDS. COLLIN IS STARTING TO PLAY WITH TOYS WHEN SUPPORTED IN HIS NEW CHAIR.

And that pretty much brings us up to date. I will try my darnedest not to let it get to this point again. I have also jumped back on the Twitter wagon to take off some of the pressure to do an entire post for every new thing.