The time just flies by, Thanksgiving is over and Christmas is right around the corner.  Dallas has remained healthy through “Round 1” of the holidays, although his sister managed to catch quite a cold.  She has been pretty good at keeping it to herself so far!

Dallas had his 3-week post-op appointment this past Tuesday and his nasal passages have remained open.  This same surgeon that has done all of his airway surgeries, is the same person that has been discussing cochlear implants with us as well.  Up until this appointment, he has expressed guarded optimism (but optimism nonetheless) relative to the surgery.  He has always felt that he would try one ear and see how it went.  Now he is feeling like Dallas may not have the anatomy for this surgery.  He previously said no further CT scans would be needed, but is now mandating another CT before the surgery.  Additionally, this was always planned for 9 months of age, approximately March, and is now being pushed out until Dallas turns 1.  In the end, we certainly don’t want the surgery to take place if there is not a good chance of it being successful, but it was a little disheartening listening to this new found pessimism.  In any event, we are having a group meeting in 2 weeks to discuss the implants further.  The implants have to be approved by a state medical board of some sort and the approval takes 3 months.  A repeat CT scan is being planned for late February.

Last Thursday night we stayed at Children’s for a follow-up sleep study. This was to confirm that Dallas’s oxygen saturations were adequate without air support at night.  GOOD NEWS!  He PASSED!  Of the 9 hours he slept, he only had 14 minutes where his saturations were below the acceptable range.  So, he is officially off air at night for now.  We continue to monitor his levels every night, so that if there is a change we can address it.

Dallas is eating well!  I would say he eats 80% of his food orally, and the other 20% via G-tube.  He has another swallow study next week to see if he can now tolerate thinner liquids.  As of now, he still drinks his bottles at a “honey-thick” consistency.  He weighed 15 lbs this past Friday.

We are still keeping very busy.  We have 2 appointments next week and 3 the following week.   Also next week, I am getting the opportunity to meet two other mom’s that have sons with CHARGE syndrome.  It makes me a little nervous, but I know it will be good to meet other parents who have been through this before.