Aero Digestive Clinic

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Look at that double chin

Sunday we left for Birmingham, Alabama to see an Aero Digestive Team at the Children’s Hospital. The ride was AWESOME, Jaxson did not scream for hours and did not throw up all over himself. We always dread driving with him but since switching him to forward facing it’s been a lot more bearable lol.

Our appointment was SUPER early, 0745, so we decided to leave the afternoon before and stay at a hotel.

JJ had his Kindle Fire 7 Kids tablet and portable DVD player and as long as Jaxson had snacks and his bottle we were golden.

Eating some crackers

Left the hotel at 0700 and stopped for the essential… Dunkin Donut coffee with a turbo shot. Coffee has been a staple since the day this little peanut was born, lol.

Parking is ridiculous at UAB, if you ever go to see a specialist–GET THERE EARLY! Allow enough time to park and PLAN TO WALK A LOT. I brought my carrier this time and carried Jaxson through the hospital as my father in law pulled a Radio Flyer wagon (they provide these) with my oldest in it.

Thank god for family! I don’t know how I would do it without them!

When we checked into Clinic 6, they had us go up to Imaging to have an x-ray of his chest done prior to the appointment.
Afterwards they took our little peanut’s vitals and I should say that he’s no longer a peanut.. he’s a chunk chunk. He’s a whopping 22 lbs now! If you would’ve told me he would go past 10 lbs this time last year I wouldn’t have believed you! He’s still on the short side, 29 inches, but that is to be expected in children with DYRK1A syndrome.
We saw a team that consisted of a Pulmonologist, Gastroenterologist, and two Speech Therapists. We mentioned our concerns and that we wanted a second opinion on his sleep apnea and gastro problems. Jaxson has been sleeping terribly for months now and I have been worried it’s related to his diagnosed sleep apnea. It’s probably more behavioral but I wanted to rule out the apnea to ease this momma’s mind. 
Found that with his current weight that his dose of Zantac is TOO low so we will be adjusting that dosage to help with reflux. Sleep study will be scheduled for when we move up to North Carolina and possibly done at Duke. The chest x-ray came back normal as well!
Swallow Study
They sent us down for a swallow study to rule out aspiration for his choking and gagging on solids and his almond milk. He hadn’t had a swallow study done since he was a month old so thankfully they put in for this.
The barium swallow study showed no penetration when he consumed thin liquids, puree, and crackers. GREAT NEWS! I’m so relieved. The Speech Therapist who did the test thinks the choking and gagging is more Sensory related so I’m hoping I can expedite his Occupational Therapy referral with this information. 
I might look into this more thoroughly to ensure that it’s indeed Sensory related.
Now I just have to worry about our flight on July 3rd, Jaxson has NEVER flown. 
Send good vibes please!

June 26, 2018
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  • Reply Wendy Lynn

    Have a safe trip tomorrow (July 3)!

    July 2, 2018 at 11:49 pm
  • Reply JaxsonsMomJennie

    Thank you. I'm anxious as hell!

    July 3, 2018 at 1:19 pm
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