Our appointment with Silas’s endocrinologist went well the other day. I really like when all of us can be together for Silas’s appointments, and since Ryan was off from work Friday, we all got to drive to the hospital together. Maybe it’s more of me running over the list of thoughts I have before going in to an appointment, but Ryan and I get to recap what questions we should ask, what we think the outcome of the appointment will be and reassure ourselves that things will ultimately go the way they are supposed to, and if they don’t, we aren’t afraid to be persistent about the “why’s” and “how’s.” Otherwise, I am just talking out loud to myself the whole drive there, and that’s no fun.
Silas gets weighed and his height is checked at each appointment, but this one was very important for him in making sure it was the most accurate it could be. The good news was that he has gained some weight and grown a little taller since January when we last saw his doctor, about an inch and a pound. It wasn’t much, but it indicated that Silas isn’t growth hormone deficient, which is wonderful. Even though he isn’t deficient, he was right on the border of deficiency with how low his growth hormone levels were at the beginning of the year. We had labs drawn last week but they still were not back yet, so we are waiting on his doctor to let us know the results of that test sometime in the next week or so. In January, he was in the .05 percentile for his height and weight. Despite his growth since then, he has fallen further off of the growth chart with his growth being in the .01 percentile. Although he is a much smaller guy than is anticipated for an almost-3-year old, he is following his own growth curve and maintaining that, which is good.
After meeting with his doctor, we had a bunch of questions. Mostly about growth hormone therapy, if it seemed necessary, the pros and cons, and what we would do about it with his surgeries coming up. His doctor said that if it weren’t for his upcoming surgeries in the next 6 months or so, we would probably be starting him on growth hormone shots by his birthday in November. These are daily injections of growth hormone that he would get until he is about the age of 16 to 18 years old, whenever he stops growing. She doesn’t feel that the shots are worth doing at the time since he has so much going on, and still isn’t quite sure that his mild strides in growth aren’t due to either his sleep apnea or his heart issues, etc. So we are going to see her again next summer, after all of his surgeries are out of the way, to reevaluate the plan for growth hormone therapy. She said there is a possibility he may not need them at that time, but that it is very probable he will. CHARGE syndrome and low growth hormone or growth hormone deficiency is common, and that could be the case with Silas as far as why his levels are so low. Daily injections is not sounding like a whole lot of fun, but if it ends up being necessary then that is the route we will take. And that is a bridge we will cross once we get there.
On the drive home, Ryan and I talked about the appointment together, and agreed that not much was said that we weren’t already expecting. I am really glad we have each other as a team. I don’t know how I would manage this life without him.