This visit was our third trip to Dallas. Our first visit we went to meet Dr. Fearon and develop a game plan. The second visit he had his MRI, and this visit he had a sleep study.
We had a lot of time to kill between his sleep study and our appointment with Dr. Fearon this time. We started off the day getting some breakfast from the cafeteria. Afterwards I popped him in my wrap and went for a walk outside. He passed out about 5 minutes later and slept for 2 hours. Then we got some lunch and went to play in the lobby of the Children’s Hospital. Jameson had a great time. I think he enjoyed having all me all to himself!
We finally got to see Dr. Fearon and got his sleep study results. They were great! His O2 saturation was at 94, and there were zero obstructions in his airway. Dr. Fearon said he was actually surprised Jameson’s results were so good because of how recessed his mid-face is. I was surprised because Jameson only slept for 4 hours during the study, and I was worried that wasn’t enough time, but Dr. Fearon said he only needed to get a picture of what was going on when Jameson was in a deep sleep. So, good news!
Second, he took pictures of Jameson’s head and took his measurements. Unfortunately, his head isn’t growing. And when it’s plotted with his previous measurements it is actually getting smaller. Luckily, he isn’t worried about Jameson’s development – he clearly is crawling, playing, doing everything normal babies do. The original plan was to wait until 12-15 months to do his first surgery. The plan now is to do surgery at about 11 months. So, we’re looking at sometime between mid-November to mid-December.
Hopefully we’ll have a date in the next few weeks. We have to go in and see his pediatrician here. Once we have the date for surgery Jameson will need to go in once a week for 3-4 weeks before surgery and get a shot of procrit. The reason for this is it builds up his supply of red blood cells prior to surgery and he won’t have to rely on blood transfusions as much during the surgery.
I wasn’t surprised or shocked when Dr. Fearon said we were going to have to move up the surgery date. I knew that he was going to have surgery one day. It just feels so much more real for some reason. I know Jameson needs it. Driving home I wasn’t mad, or angry, or sad. I’m not worried about Jameson – I know we have the best craniofacial surgical team in the country. I can’t describe my feelings.
Driving home I had this enormous lump in my throat, every time I swallowed I could feel it. I just thought about how proud I am to be Jameson’s mom. He has an ability to put a smile on everyone’s face, and brings out the love and compassion in everyone he meets. I just love his smile, it lights up a room – and he never half-smiles, it’s always a whole, huge grin that is bigger than his entire head!
Here are pictures from our trip: