Colby snorkeled, big shock! He loves to snorkel and people like to go with him because he can identify all of the fish and underwater stuff. He was a little frustrated that he hadn't researched what species would be found in a water "inlet" because as he told me, "This is a much more different habitat then where we typically snorkel, so different fish will thrive here!" I replied with, "Like I didn't know that!" He just rolled his eyes- his new favorite response to much of what I say.
Sunday, July 18, 2010
Ups and Downs
Yesterday we went to Dubois Park with our friends, the Lengas. It was a pretty good day, followed by a hard night. I've decided that this whole process is really an emotional roller coaster. Just 'cause you have a good day, don't mean the rest are going to be that way! I heard Dr. Paley describe this as a four month surgery, not a four hour surgery. He explained that, typically the first day or so after surgery is the most difficult. Then, the patient gets better and heals with time. However (why does there have to be a however?) with lengthening you are pulling the bone apart each day- actually 5 times a day- so the worst time is really near the end of the distraction period. We are finding this to be true! So, pardon the random ups and downs of these posts, that's just what it's like around here.. I've digressed, let's get back to the outing.
What a cute kid!
We love Servando! He is one Dr. Paley's P.A.'s and he has a great connection with the kids. He was finishing a dive near where we were swimming so he stopped by to say hi. The kids were thrilled, even though it was funny to see Servando outside of the hospital. Kinda like when you see your teacher at the store.
The boys played in the sand, careful not to get any in their pin sites.
The other night Carter was having quite a bit of pain. I was rubbing his foot and looking at his leg. I know this may sound silly, but I got sad when I looked at his leg. I swear his leg would have less scaring if he'd been munched on by Jaws himself (I guess technically is would be "herself"). His knee cap is only about half the size of his "good" one, so he doesn't have a regular looking knee and his right calf is smaller, as is his foot. I know it was just vanity talking, I don't know what to say in my own defense. I guess, as his mom, I just want him to be like everyone else.
the bar is now long enough to be an arm rest!
The doctor is concerned about preconsolidation-his bone is filling in too quickly. I've been assured that this is a fairly routine complication. If his bone does indeed preconsolidate, he will have to have it rebroken so that we can continue lengthening. Right now we are trying to avoid that by turning the fixator 5 times each day-up from 4. The result has been more pain and his knee is getting tighter. We are stretching more and we're starting water therapy next week so that he doesn't lose the range of motion in his knee.
Helping Carter relax and fall asleep really dominates our evening hours. Poor Caitlin has fallen asleep, more than once, waiting for someone to read to her. She is as patient and understanding as a seven year old can be. And it's not all bad for her, she is having a great time swimming each day and searching for hermit crabs in the tide pools. She reminds me so much of my sisters and myself when we were little. We spent much of our youth playing at the beach and swimming. We used to spend hours searching on the rocks during low tide and finding all kids of critters and we'd swim until we were exhausted. Sweet Caitlin is the same way!
Carter has gained nearly an inch and a half since we started lengthening. We had to get a new shoe! We only had a half inch lift added to the new one because he is making such good progress. When I look at his old shoes, compared to the new one, I realize how fortunate we are. Yesterday I was talking to my friend, Kim (her son is in the pictures with Carter) and I asked her if she thought the boys legs would ever look "normal". She told me what I already knew, "Nope, but these boys are so lucky!" Carter will leave Florida in a few months with two legs of equal length and a hip and knee that have full range of motion. His leg may look a little different but, all things considered, we couldn't ask for a better outcome. So, when we get sad and are ready to call it quits, that's what we have to remember!