We had appts at Riley on Monday. Tyler had an ultrasound and the urologist said there were no changes. Then, we met with the developmental pediatrician, Dr. B. I love this man more every time we see him. He is my favorite doctor. We told him about the changes in Tyler we saw while he was on the steroids. He was doing things he had never been able to do before. Prior to the steroids, Tyler didn't have the muscle strength to reach out and grab an object. He was doing this and more much to our amazement considering he had lost weight in the hospital. Dr. B agreed that the high dose of steroid was what had caused this. It isn't an option for Ty to be on these but we questioned if there was any other options that we could consider that would have the same effect. He told us he would do some blood work up on Tyler's hormones, thyroid, etc. If it came back that he had deficiencies in any certain area, we could look at replacing those hormones such as growth hormone therapy or some other options. He is going to do research on growth hormone therapy on children with Wolf Hirschhorn Syndrome. We would consider options not based on the fact that we want Tyler to be taller or bigger (because we don't) but if it would be beneficial in helping with muscle tone. We will get the results of the blood work early next week. We also discussed Ty's weight gain. He continues to trend downward on growth charts in the area of weight. We already boost his formula to add calories but are now boosting it even more. He basically told us that if this didn't work then we would have to start considering other options which is codeword for feeding tube. We will revisit this when we see him in April so we have about 4 months to beef this kid up! Please pray that Tyler will gain some weight.
In other news, we were able to get the appt in Louisville with the neurosurgeon moved up. We now go December 7th.
PS Can you believe Tyler is now 8 months old?!