Bye Bye GI

Clare had her follow-up GI appointment yesterday. Again, I was a little nervous not knowing what her weight was going to be and what the GI would think. Before going to the appointment, though, Shawn and I agreed that we were not in favor of any further supplementation or medication - no added powders to her food, no appetite stimulants, no high-calorie drinks, that kind of stuff. Maybe that sounds like we don't care or don't want to put the effort in, but that is absolutely not the case. We feel that Clare is doing so well, slow weight gain or not. We have accepted the fact that she is going to be a peanut and not put on the pounds as quickly as Jamie did. I know there are many parents out there who are struggling with these same feeding and weight issues and concerns regarding their children and are doing everything they can to find out if there is something wrong or to bulk up their kids. And I don't think that is necessarily a problem. But, to me, Clare is a different case. We know what is "wrong" with her. We know that babies and children with WS struggle with feeding and weight. We know that individuals with WS do not grow to be very tall people (I think the average height for girls is around 5 feet). We know that Clare herself had a slow start with eating solids, has had multiple hospitalizations, and other factors interfering with her gaining weight. We also know that Clare is healthy. Her hair is growing long and curly (and strawberry-blonde, like Auntie Chrissy! On a sidenote, both my sisters are a varying shade of redhead, but I am blonde with no hint of red. So I love it that Clare is showing some of that red!). Her fingernails grow longer than we can clip them. Her skin is a beautiful color and her cheeks are rosy. She is rarely sick with colds or viruses. She is obviously not a little girl who is starving or lacking nutrients. So that was our justification for putting our foot down to any added measures!

The good news is that the GI agreed with us! Clare gained 11 ounces in two months (up to 16 lbs, 12 ounces now), and he was pleased with that gain. I asked him point blank if we had to continue seeing him since there really was nothing he was doing for Clare right now (I put it in a nice way and we have a great relationship with her GI, so he understood where I was coming from!). He said that cardiology likes to have him involved in Clare's care just so something is not missed, but he agreed that Clare was doing great. Clare does not have to return to the GI for six months. We were happy to (almost) knock another doctor off the list!

Clare also had her regular hearing test yesterday. She has made progress in her hearing skills, but is still a little behind. Hearing is developmental as well, so that is not a surprise. The audiologist wants to see Clare again in another three months and hopefully, at this visit, Clare can be discharged from her care. It really is nice to see our long list of doctors and appointments slowly dwindling!