Tuesday Appointments

Today we went straight into the therapy department where we met with PT and OT and the upper extremity specialist - Dr. Gogola. She thinks Peyton has lots of potential too. She says she wants to splint and stretch for now to see what he's got before they look at surgeries. She said that she would want to give Peyton at least a couple of months before we schedule an elbow release surgery. Since his elbows have really not been stretched, we don't know yet if we can get any range of motion on our own without surgery. And even if we get some of the motion, but not all - it makes the surgery less extensive. Dr. Gogola says another surgery he might have to have is to remove a wedge of bone from the top of his wrists to enable them to uncurl into a more neutral position. Once again, we might possibly could achieve this without surgery so we'll see after a few months of splinting and stretching. There isn't much they can do for his fingers - other than a surgery to move his thumb out of his palm if splinting and stretching don't work. If the fingers are stiff like his are, then sometimes they loosen a little - but basically what he's got is what he'll have. I asked them what their opinion was of the severity in his case - on a scale of 1 to 10 they give him a 5. So that's good! They think he's doing wonderful right now and are definitely impressed with his head and trunk control, not to mention his leg muscles - the quads and hamstrings. They try to stretch his knee and he resists them - they really struggle to make that right knee bend because he fights them.
So we went over to the Children's Hospital to get the ultrasound of his groin area. We don't know the results yet. We'll find out tomorrow. The ultrasound tech did say she saw a lot of fluid on the right side of his scrotum. But she would not say anything further about a hernia. So we'll have to wait and see tomorrow. The Shriner that drove us to and from the Children's Hospital needs to retire his driver's license. He pulled out in front of 2 cars - nearly causing them to smash into us and then he hit and ran over top of every curb downtown. The van was all over the place. And he didn't react at all except to say that thing was worse than driving a Greyhound bus.
We went back to Shriner's for another round of therapy and they made Peyton's knee splint today. They also are going to do away with the taping of his feet by the end of the week and have him in AFO's (the ankle/foot splints that strap on). We're excited about that because we were looking at having to change out that tape every other day at home by ourselves and trust me, it is not an easy task. The taping took the therapists a good 45 minutes to accomplish so you can only imagine how long it would take us! Especially with a toddler running around trying to grab at it and rip it off I'm sure!! So anyway, tomorrow we'll also get at least one elbow splint made - we're not sure about one of his elbows because it is extended so tightly with no bend it is hard to make a splint right now for that until we get something to work with. One of his elbows will bend just a tad so they can work with that. Also they're making a strap for him to wear at night only to position his left leg correctly - knee in the front of his body.
So that's it for today. Tomorrow we report directly to orthotics first to get his AFO molds made. And then on to therapy for a couple of sessions. We don't see any doctors tomorrow other than just to get the results of the groin ultrasound.
We talked a little more today about the frequency of our visits to Houston and the therapists would like us to come back in 2 weeks. So it looks like we'd be coming here bi-weekly for now.
Also a lady from Airlift Hope America emailed me back today and said that Peyton does qualify to ride on their planes. There's an option if Angelflight doesn't work out. I think we're going to be covered as far as our airfare goes from the way it sounds - of course I could be wrong but I think they will help us. The doctor said that Peyton can ride on those small planes - she didn't see any reason why he couldn't.