On Monday we drove into Philly for Elias' appointment at Shriners Hospital for Children. Elias was treated there once before back when he was 2 months old and his cast slipped off while we were home for Christmas. He had his first tenotomy there, and then they redid his cast. So this time Elias saw the same doctor he saw before, Dr. Van Bosse. I've done a lot of research on Arthrogryposis, and this doctor is one of the most sought after in the nation for this condition, so we're very fortunate to be able to see this doctor!
We arrived to the hospital on time (for once!) and were sitting in the waiting room, waiting to be called. Elias was running back and forth, wanting Kevin to chase him around (thats kinda their thing lately...Elias goes around saying "I'ma get-chu!"). Anyway, as he was running around, belly laughing, being his usual crazy happy self. As I glanced around the waiting room, tears came to my eyes as saw all the other kids waiting to be seen. As far as I could tell, every one of them in the waiting room had it worse off physically than Elias. Most were in wheelchairs, some had walkers, and other with casts, pins in their legs, etc. It brought me to my knees in thanks before the Lord that my children only have minor problems compared to most children that have their condition. But you know what? Every single one of those kids was happy and pleasant Not one was complaining or whining. Isn't that incredible?!
Anyway. So after getting called into a room and waiting over an hour, the doctor finally came in. To sum things up, he said his left foot (the clubbed one) is healing well from his surgery, but it still needs more work. He said he has great dorsiflexion, which is when you lift your toes up closer to you. However, he has almost no plantarflexion, which is when you point your toes. The way to correct this? More casts.Yep. And the non-walking kind, just like he had after his surgery. Its going to be terrible. But we gotta do what we gotta do to give him the best chance of having a "normal" foot. After the cast, he wants to make him a new brace that is not hinged like the one he has now. He says he needs one that is more sturdy in the ankle. The doctor said this doesn't need to happen immediately, but sooner rather than later. So we decided that we'll get the cast put on after Christmas.
The doctor then looked at Elias' neck and somehow managed to stretch it as Elias screamed his head off. He said he actually has great range of motion in his neck and doesn't think he'll need that surgery we talked about before to loosen the tendon in his neck. So that's some good news! The doctor took a ton of x-rays on Elias' hips (which are totally fine, he was just double checking) and his feet. I'll upload the photos of the x-rays in a future post so you can see exactly what's going on with his bones. I wasn't with Kevin when they did the x-rays, but he said it was WWIII in there. Elias hates being held down (what toddler doesnt!?) and he hates even more his feet turned this way and that.
While the were getting x-rays I had to run down to the lobby and get Gavin's paperwork, because the doctor said he would see him too! Orignally the appointment was just for Elias. Since Gavin would be a new patient, the wait list to see this doctor is 3 months long. But while in the room with the doctor, he saw Gavin's boots, asked about him, and said "thats ridiculous, I'll just see him today while he's here". Have I mentioned how awesome this doctor is?
So now about Gavin. He said his feet look great! He said to continue using the Ponsetti boots at night and that his feet shouldn't need anything else done to them! Then the upper extremity doctor came down to the room to take a look at Gavin's hands. He said he thinks its a problem involving the tendons and the webbing space. He said he might need surgery to correct the webbing, but depending on how well his fingers respond to splinting, that might be all he needs. But one step at a time. So we went to OT and a wonderfully nice woman made Gavin two little hand splints then and there. He's to wear them at nighttime along with his boots. After just a few nights of wear, his fingers are already feeling looser!
After 6 hours at the hospital, we finally were on our way home, but no trip to Philly is complete without a Pats Cheesesteak. Mmmm :)
Kevin is loving his new job! Its a little new for us to have him here with us during he evenings, since back in MA he was gone 4/7 nights a week. But at the moment, youth group is just on Sunday nights, and he has his office hours during the day, so he's usually home for dinner and evenings, which is such a great thing for us as a family right now.
We went to the bank on spoke with them about pre-qualifying for a mortgage. At the end of our meeting, the guy said he's been doing this for over 30 years, and based on what we gave him, he doesn't think we'll have any trouble getting approved for the amount we're hoping for! YAY! So we should be hearing from him today or tomorrow, and in the mean time, we've set up an appointment with a realtor for this Saturday to begin our search for our very first home! Our hope is to be somewhere by Christmas, but we're not going to rush it. That's just our hope :)
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