Well, we met with Doctor Paley on Friday. I had planned on making a post after the appointment, but it was a difficult day and I haven't felt like writing until today. There is good news and bad to be shared, but I will start with the good. It was great to meet with Doctor Paley and to see his clinic. Carter leaned over to me and said, "I've never seen other kids with lifts on their shoes!" It was nice to see a room full of children with conditions similar to Carter's. The staff at the clinic were helpful in answering some logistical questions (insurance, housing, keeping up on schooling, etc) and they are going to help in the appeal process with the insurance companies. So there were some very positive parts of the day.
The not so good news is that Carter needs an additional surgery. As many of you know, Carter previously had surgery on his hip to make it ready for the lengthening process. However, there is more deformity in his pelvis than we had previously realized. Long story short, Carter needs additional hip reconstruction. In August he will have a surgery where the Doctor breaks (or cuts as Jason likes to say) his pelvis in three different spots and then shifts the pelvis/hip socket so that it covers his femur bone as it is supposed to do.
I took the news hard because I thought we had already done this and it breaks my heart that Carter has to have another painful procedure. I am also worried because this can't be cheap (I didn't even ask how much, sometimes ignorance is bliss even if only for a week). I had prepared myself for a hard year, but now it is looking more like a hard two years (or more). He will have the hip procedure and it will be a year of healing and physical therapy before he is ready for the lengthening process. The lengthening surgery will be next summer.
I was nice and pleasant in the Doctor's office, but I got really snapy once we were in the car. Jason took the brunt of my frustration. The drive home from these appointments is always hard because we are both upset and we feel helpless that the situation is out of our control. Jason and I would give anything to take this away from Carter, but we can't. There isn't anyone to take your frustration out on except each other. That being said, we were fine once we got back to the hotel and Jason has tried hard to listen to me and comfort me. He just hugs me when I start crying even though I know he wants to say something to make me feel better. I appreciate that because nothing he can say will change how I am feeling.
The other positive thing is that we are in the sunshine state, so I can wear really big sunglasses and no one can see my red eyes! I have tried hard to be happy and we have had some fun family time at the beach and exploring Florida (I only tear up ever now and then and I have my sunglasses for concealment). I am so happy that Colby and Caitlin have been able to be with us on the trip. I think knowing were Carter and I will be in August and where they will be staying next summer/fall will help ease some of the anxiety.
I spoke with another mom at the clinic, whose daughter has the same condition as Carter, about the emotional and financial stress of this whole process. As I did so, I felt comforted when I thought about our families, friends, and community. This is a difficult thing to do, but these people have made it possible. Just thinking about the support that has been shown to our family is a comfort. Thank you to the friends and family members who have called to see how the appointment went. And a very big thank you to the friends (and my sis, Jessica) who have gone over to our home and made it look nice and taken care of Jack when the real estate agent had appointments to show it. It will be nice to be home on Tuesday!
POSTED BY MOM