Clare had her first physical therapy session yesterday. We met Kelly again, who was the PT for Clare’s evaluation this summer. Clare will have one hour of PT every other week. Kelly’s schedule isn’t set yet, so we don’t have a definite hour scheduled right now, but hopefully we will soon. In the meantime, we’ll work on a week-by-week basis.
Clare liked Kelly right away, and they went right to work. Clare lasted a little over half of the session, but worked very hard during those 35-40 minutes, so she was exhausted when done. Kelly mainly concentrated on getting Clare through transitions – from laying to sitting and sitting to standing. Clare does not transition at all independently, so Kelly showed me some techniques for helping Clare that we can work on during the week. I am hopeful that PT will give Clare that extra boost towards crawling and walking.
During Clare’s PT session, Shawn and I did get an eye opener into something else going on at home. Jamie, of course, is around during Clare’s sessions, and he usually wants to be right in the middle of everything. During Clare’s OT, Jamie and I often stay in the kitchen (within earshot and eyesight so I can get an idea of what Clare is working on), but it allows Jamie to have some special one-on-one time with me. When we go to the sensory room at Easter Seals, there is plenty to keep Jamie occupied. This session, however, both Shawn and I wanted to watch the session so we could see what PT was all about. Jamie was fascinated by Kelly’s equipment, big bag of balls, and new toys. He wanted to touch everything. A number of times, Shawn or I had to tell him to let Kelly play with Clare. Finally, Shawn brought him out of the room to talk to him. He explained that Kelly was here to help Clare with her boo-boos so she can learn to crawl and walk. Shawn admits it was the wrong choice of words because Jamie started crying. He had boo-boos, too, he told Shawn. He had three boo-boos, more than Clare did (pointing out his three cat scratches on his hand where Jack surprised him the other night), so he needed to play with the toys, too.
I am not surprised that Jamie is sorting through these feelings. He still remembers Clare's hospital stays. When we went to the zoo, he wanted to buy this loud crocodile toy, which we steered him away from. Partly because it was expensive, partly because it was annoying, but also because it scared Clare. A couple weeks later, Jamie asked me when Clare was going back to the hospital so he could have that toy. He explained to me that if Clare was not at home, then she wouldn't be scared by the crocodile. We do everything we can so Jamie knows he is every bit as special and important as Clare. I think that, in many ways, we go overboard sometimes with Jamie to compensate what he misses out on because of Clare sometimes. Not like it's really that much, but it's hard for him to understand why we can't do something because Clare has to go to the doctor or has therapy or needs a nap. Or that certain things scare Clare more so than other children. Part of it is the adjustment of having a sibling as well. I think it's a good lesson for Jamie in many ways that the world doesn't revolve around him and there are other people to consider. But sometimes it's also just one more thing that's not fair about having a child with special needs. There's my pity party for the day!
In other news, Clare has her first Synagis shot (the RSV-antibody) scheduled for November 1. The clinic is awaiting insurance company approval still, but Clare’s cardiologist recommends the shot for Clare as well as her pediatrician, so we’re hoping approval will be granted. The shots start up in a couple weeks, and Clare will receive one every 28 days until April. The dose of the shot is according to weight. Last year, Clare was just under the threshold for the dose being put into one shot. This year, I fear that Clare will get two shots per visit. One of the cons of gaining weight! Clare has her GI appointment right before the shot (one of the perks of having all of Clare’s doctor’s in one location), so we’ll see what he has to say. Shawn and I both feel that Clare does not eat a lot. She loves to drink milk and will drink and drink, but just picks at her meals lately.
Clare also has her sedated echo scheduled for November 17. Originally, her cardiologist wanted an echo in late October/early November. When the clinic called to schedule it, however, the earliest they could get Clare in was December 15. Since she requires anesthesia for her echos, she has to have them performed in the ambulatory surgical center at our clinic, which is a tight schedule. When I was told the December date, I asked the receptionist to please double-check with the cardiologist if that date was okay because it was six weeks past when she wanted to see Clare. Sure enough, we got a call a couple days later that they were able to squeeze Clare in on November 17. I guess the cardiologist didn’t want to wait that long! Of course, it is a 6:30am time slot and Shawn is in Houston on business all that week. Thankfully, my sister Erin is able to come down the night before so she can stay with Jamie while we go, and Shawn’s boss is letting Shawn leave a day early, so he can be here for the echo.
I knew fall was going to be a busy time for doctor’s appointments. But I would rather get them over with and enjoy the holiday season!