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.