We went to PCMC back at the first part of December, for some follow up checks.
We saw Genetics, and Comprehensive Care Clinic. Both were great appointments, and even though we didn't leave knowing much more than we did before, it was nice to talk with the Doctors and have all our questions answered.
Genetics did some blood work and a urine test, to further us along on some genetic testing we are currently doing. The blood work came back with some high levels, which didn't mean anything to me, but I guess it lets the Genetic Doctors know a little more the direction we need to go. We will be seeing a metabolic specialist in January to get more in depth with our testing.
The Comp care clinic is a clinic of several different doctors, that you are apart of if you see more than 3 specialists at PCMC, and have a life long illness. These dr.'s were great! I even was given their personal work e-mails, and their direct lines...talk about amazing! They switched up his medications slightly, they removed one and increased another. They also want to get him AFO's, which are splints for his legs. As well as a stander, which will help him learn to hold his own weight. This doesn't mean that he will ever be able to stand alone, but if he's not able to have his hips hold his own weight before he's 3 then the chances of his hips growing out of socket increase.
We also have had him fitted and are pre authorizing a wheelchair for T to be able to be apart of everyday life a little more. Exciting things are happening, and knock on wood T is doing great these days and has stayed healthy for quite a while! This couldn't be better, and we truly know how blessed we are for his health!