It's hard to believe it has been 6 months, but the calendar doesn't lie so we went back to the DS Clinic yesterday for another appointment. This was my first solo trip as Randy has a training class this week. Justin woke up early in the morning, so he was ready for a nap on the way to the appointment. I turned his seat around last week and I just love being able to see both boys as I am driving. It is a stitch watching Justin's eyes roll as he nods off to sleep. No more asking Travis if Justin is asleep. There's no doubt! So I took the long way to the hospital to give a few extra zzzs and we still made it on time.
There was the standard weigh-in and just like at the pediatrician now Justin doesn't have to strip for weighing. He looks so little on the big scale! They have a very big scale and it's difficult to get him to sit in the middle of it and not move since I can barely reach him! But we were in a room before too long and waited only a bit for the gang to arrive. This was the smallest group ever: no interns and only OT (not PT and OT). The OT and the speech therapist were both new to me but they were wonderful with Justin. This was our second visit with the doctor, who took over the clinic after the other doctor last summer. They have plenty of notes on Justin though since this was our fourth visit. He really showed off and did a great job of "performing" for the group. He was evaluated (again!) and his development was judged at being 18 months for OT, which was in line with what Miss Caroline said a few weeks ago. Speech was about 12-15 months, mostly brought down by his lack of any recognizable spoken words, and PT was the lowest at 10-12 months because of the whole not-walking thing. But he made tons of progress based on their last assessment. OT jumped the most I think, about 7 months from the last visit. Nothing startlingly new came up during the appointment. We were advised to work on the same things we have been doing.
The most frustrating part was not feeling like anyone has any ideas or suggestions to help with some of our problems. I got shut down when I brought up Justin's sleep problems because they aren't in line with apnea, which is the most common sleep problem in people with DS. It goes back to the problem with endocrinology: it doesn't fit in my area so you'll have to find some other answer. I feel like I have to diagnose the problem myself and then find the way to get to the right doctor and subtly suggest ways that they can come to the same conclusion and save the day. The doctors we see are concerned with ONE aspect of Justin and not the whole boy. One doctor for his eyes, one for his ears, one for the heart, one for the extra chromosome, and one to make certain he has all his shots. That leaves me to care that the whole boy is healthy. Sometimes that is too daunting! Yesterday was one of those days. Because I was really counting on some help and it didn't happen. I am starting to hate the word "phase" because lately it hasn't been very "phase-like". It feels like a rut. And I don't have the momentum to get us out. I have been getting sharper with both boys and it makes me mad at myself, both for feeling inadequate to correctly handle the situation and also for being too harsh with them. I am holding on to the past faithfulness of God to get me through this because right now, I can't see much past the end of my nose.
We have one more trip to the Medical Center on Monday to see the cardiologist. We may or may not have an echo, but we have to prepare as if we were having one, so that means no food for Justin and an early wake up because we have to be there at 7:30 am. Thankfully Travis agreed to spend the night with Randy's parents so that's one less thing to arrange that morning. Please pray for him (and them!) since it's been before Justin's surgery that he has spent the night with them. Popcorn and root beer floats have already been requested!
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