Jaxson Update | December 14, 2018

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Jaxson Update #Dyrk1aSyndrome #Laryngomalacia

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Hello friends!

It’s been quite a bit since I last updated you all on Jaxson! It’s been such a busy couple months with school, settling into our new home, and establishing new specialty doctors. I’ve also taken part in a December Blog Challenge as well so that’s been keeping me busy!

Mommy and Jaxson

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Speech Therapy:

Jaxson has had a Speech Language Provider come by the house every few weeks to check his progress and come up with a new plan. On his second visit I had mentioned that Jaxson hasn’t learned any other signs. Therefore they were contemplating on starting Jaxson on pointing at pictures to communicate.

Well, great news friends! Jaxson recently started to point at his mouth for “eat,” which is similar to the American Sign Language for “eat.” He does it in his own little Jaxson way like he does with “more.” Since he picked that up we were focusing on teaching him how to sign for: pleaseminemusicwant, and all done

We will be seeing the therapist mid January for an update.

Physical Therapy:

We drove out to Wilmington a couple weeks ago to be fitted for a pair of SMO’s, supra-malleolar orthosis. With the hoops we’ve had to jump through with Tricare it has taken a bit longer to get. The team at the orthopedic clinic have been helping me out with that headache. 

They called me a couple days ago to notify me that they received the diagnosis codes from the Physical Therapist and will be sending them out to Tricare and his Primary Care. We picked out this adorable monster pair with black straps!

Crossing my fingers!

Occupational Therapy:

Jaxson has been seeing an Occupational Therapist twice a week for the last couple months and seems to be doing quite well. He’s able to take a piece of yarn and put it through one of the Melissa & Doug toys. He also loves the Melissa & Doug puzzle pieces, we asked his Aunt Laura to snag some for Christmas! 

He also likes to play with this peg board, which is awesome because it helps him work on his fine motor skills! I asked my Father-in-Law and Ms. Beth for the Learning Resources Spike the Fine Motor Hedgehog! I’m excited for him to open it on Christmas.

JJ and Jaxson, December 2018

Lastly, our visit to Duke:

This momma felt like such a bad ass, I drove out to Durham, North Carolina by myself with little Jaxson. It took about 2.5 hours to get there and I did not get lost! Go me! Like University of Alabama the place was huge! I ended up parking in the farthest parking garage from the Pediatric Clinics so I had to ask for some assistance getting there. 

The staff member walked me all the way to the Pediatric Clinic, I checked in, and waited for the appointment. Jaxson loved the little play area, there was a table to play out and one of those Fisher Price cars. We ended up waiting about a couple hours before being seen by his ENT, no biggie. Jaxson did well so I wasn’t stressed out. 

They took all of Jaxson’s history because they weren’t given anything other then he needed to be seen for Adenoids and Tonsils. After the demographics the doctor came in. At first he wasn’t concerned about a sleep study because he thought it was very recent, August 2018. However the last test done was back in August 2017. We are scheduled for a sleep study in February and hopefully we can get an EEG done at the same time to check for seizures in his sleep.

They also scoped him in the office to check his adenoids, tonsils, and to see if his laryngomalacia resolved on it’s own. All looked great! He doesn’t need additional surgery to remove his adenoids and tonsils, and his laryngomalacia has pretty much resolved itself!

I thought I would get lost finding the parking garage where I parked but I found that easily…

I got lost for an hour!

I was able to locate the parking garage I parked at that morning however I couldn’t recall what floor I parked on. I started from the ground level all the way up, and kept looking for a good 45 minutes before I started freaking out and crying. I felt like such a baby but I was tired and just wanted to go home and it was 2.5 hours away. 

Thankfully a couple people offered to look for my car as they drove down the parking garage. One man even offered to walk with me up and down the parking garage. I wasn’t aware that if you turned a certain way it would take you in a circle, up, or down. I ended up parking on the B1 floor, but didn’t think it was the basement because it had openings to the outside. Oh my, I felt so silly!

I’m so thankful for the good Samaritans! 

As always, thank you for reading! Please feel free to share our progress!

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1 Comment

  • Reply Sonila

    I love reading your updates!! The picture of the two of them in the couch is adorable!!

    December 15, 2018 at 1:10 pm
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