The Week at Riley

This was another week of therapy coordination and doctor's visits. Brendan had to go the Cranial Facial Clinic at Riley Children's Hospital to see a specialist because at his last neurologist visit she was concerned about his head growth. She wanted us to get a second opinion. The reason is that they can do surgery to correct this if it is going to be something that is impacting his development, not for cosmetic reasons. We saw the specialist and he did not feel that it was significant enough to do surgery, but just wants to him to continue the helmet therapy and see him again in 4 months. It was good news to know our little guy is not going to have surgery on his head because he has already been through so much.
I turned around and went to Riley again on Wednesday morning with Aiden. Our pediatrician was concerned about his size, so probably for the last 3 visit she has mentioned seeing an endocrinologist and wanted to look at getting growth hormone. I was very hesitant to do this because he is still so young to even begin growth hormone therapy and he has been behind the curve since he was born at 3.3lbs!! After rescheduling 2 appointments, I finally broke down and took him to the endocrinologist. She actually was not concerned about his size and just told me to keep adding calories to his meals where we could. She wanted to do a routine blood test to make sure there were not any issues. Just our luck, the blood tests came back showing a possible growth hormone deficiency so further testing was needed. The test is a 3 hour test where they stimulate his pituitary gland. The tough part is that it involved not being able to eat after midnight and a blood draw every 30 minutes. It was not a good procedure to start because he his veins are so tiny they had to put IV in his foot which met he could not walk and that made him mad from the beginning. By the end of the test he was so upset that the nurse decided that 5 blood samples were enough and we could let him eat. I think she did not like the fact little Aiden was disrupting all the other patients around him!
After the test as a special treat we met dad for lunch at Champps. Aiden devoured a entire grilled cheese sandwich in record time!!
We get the test results back in a week and I will post an update.