Appointments for Miss Laynie

We headed down again to Salt Lake for some appointments for Miss Laynie. She had an appointment with an Endocrinologist to talk about her missing olfactory bulbs and talk about her lack of growth hormones. He just ordered some blood work and we will just get her labs drawn once a year until she reaches puberty. At that time she will need to start growth hormones to help her go through puberty. So all in all, a very low-key appointment besides the blood draw:(

Next up was a modified barium swallow study. They do this in radiology and mix barium with some thin liquid, nectar, and honey consistency. She did surprisingly well during the study. She stuck her little tongue out and happily ate everything they fed her, besides the thin liquid where they had to use a syringe to squirt it in her mouth. She is VERY protective of her mouth and doesn't let a sole inside it!!! She ended up failing the thin liquids and passing the nectar and honey. I was so proud of her. Since she is so inexperienced with eating we will start her with honey consistency foods. We now have the go ahead to start with oral feeding. This is a VERY slow process, but it is exciting to start letting her experience real food.

Last, she had an appointment with the dysphasia (trouble swallowing) clinic where she saw the GI doctor and a dietician. The dietician was NOT impressed with our new blenderized diet. She was all about using formula, but the GI doctor was fine with it as long as she got all the nutrients she needed. She weighed 18lbs 4oz which is still not as much as they would like her to weigh. We are going to continue on the blenderized diet, but up the calories in the formula. Hopefully this will help our little gal gain some more weight. They try to compare her to a normal healthy 17 1/2 month old on a growth chart and most kids with CHARGE syndrome are small, so it isn't fair to compare her to the normal chart. I think she is doing great, but I will do my best to fatten her up a bit.

Our poor girl was sooooooo exhausted after a long day of driving, appointments, and a blood draw. She zonked out on my lap during our last appointment. She is a trooper:) We are proud of our girl and happy with the results from her appointments.....

Oh, and she also had an appointment with orthopedics last week and her hips are doing good. They still want to monitor them as she grows, but so far so good! (She has hip dysplasia)

And her little conjoined toe is fine. He says he doesn't want to separate them unless there is a problem. One of the toes is missing a little bone actually so it is better that they are together!

Geez, this girl keeps me busy.