Today Haleigh had her follow up appointment at CHOP. She met with Dr. Zackai and her "team". They really are a great group of Doctors. They are communicating with NIH through all of this as well. As a whole the appointment was good. She is very happy with Haleigh's health and general appearance. She said she is well nourished and very happy. She is delayed but progressing, so she isn't worried at all. For height she is in the 50th percentile for a 10 month old, for weight she is in the 50th percentile for a 6 month old.
She took some more measurements of everything and noted what they couldn't use a year ago. For example, her hair is very short and thin for her age. Her "soft spot" is also still open. Most babies close completely by 18 months. She still has no speech but she does show an understanding of what we say and she can do some simple sign language to prove it.
They entered her in a chromosome study. This study will look at each individual chromosome and try to find any damage. Since they can't match a disease or condition they are going to find the damaged chromosome and go from there. Josh and I also gave blood for this study so that they can do some comparisons.
We are also going to do another skeletal survey when we return home. The "bone" doctor is going to take a look and meet with his colleagues to see if there is anything of interest. They didn't give us any specific tests because they are going to talk to the doctors at NIH first. We will probably do all the recommended testing there in April.
So now Haleigh is officially a part of 2 studies. If nothing else, maybe somewhere down the road, she can help out someone else.
