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Dallas continues to keep us on our toes as we have been at Children’s for 3 days.  I brought him in on Monday morning around 1am because his heart was racing and he was breathing fast.  When we arrived in the ER, he had a temp of 103.3 and his heart rate was consistently over 200.  This happens when babies get fevers I guess!  He was diagnosed with pneumonia within an hour of arriving at the hospital.  It was visible on his chest x-ray and lab tests showed his body was compromised by a virus/ bacterial infection or both.  Dallas did a heck of a job fighting this off, and it helped that he had great care.  They put him on both oxygen and HiFlo and this helped slow his breathing down.  He earned a reputation of being a little troublemaker after he managed to screw up two different IV’s that were placed in his head.  They gave up after the 2^nd one, and decided he could get meds through his g-tube.  He loves to pull on anything that doesn’t normally belong to him or on him. J  We just got home a few hours ago and Dallas is incredibly happy!  He does not stop talking and smiling.  Other than some antibiotics for the next week, it’s back to normal for Dallas.

In other news, sounds like I am hosting a broadcast television show, we had the "Cochlear Implant panel" last Thursday at the University. This day did not bring much new information, nor was there specific good/bad news. We discussed the device itself, the complex nature of the surgery, and the extensive therapy required afterward. The plan is to have a repeat CT scan in March and possibly schedule the surgery for one ear sometime in late spring, early summer. Dallas's surgeon expressed great concern regarding the potential success of the implant, but did not discourage us from thinking this could be his best shot at hearing.

Dallas has not had a feeding through his G-tube since December 6th. After 10 days of only oral feeds, he had gained 10oz! We are not sure where he is at now, but he will be weighed again in 2 weeks to make sure he continues to gain weight appropriately without any G-tube feeds. He certainly is getting that chubby cheeked, chunky leg, 6-month old baby look! We love it.

Here's a picutre of Dallas right after he pulled out his 2nd IV.  Looks pretty guilty!

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.