Our Day | 07192018

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Jaxson waiting for his ENT appointment @ Nemours

ENT Follow-Up

Today was our follow-up visit with his ENT Doctor at Nemours Children Hospital. Jaxson had tubes put in his ears and had both his lip and tongue tie clipped back in December 2017. Today was just a follow-up on how they were healing and if his tubes decided to stay put. It was a fairly quick visit, we discussed his most recent diagnosis of DYRK1A Syndrome and what it means for us, his ears, lip, and tongue all looked great as well. We also discussed his Laryngomalacia but she felt confident that she didn’t need to check it, he’s been breathing easy and stridor free, AND thriving! We were probably in that office for a total of 15 minutes!

Panera for Lunch

We had a couple hours to kill prior to our speech therapy appointment, and this momma wanted some Panera! I’ve never had their salad before and had an inkling for it today–I went with the Southwest Chili Lime Chicken salad with a side of Baja macaroni and cheese. I was not disappointed! As always Jaxson nibbled on whatever mommy was eating: an avocado, cheese, and some of my baguette. His brother JJ ordered a ‘turkey sandwich’ but only ate the turkey slices and yogurt. 

Walking around the mall with time to kill is quite dangerous. I ended up wandering into Carters (YIKES) but only came out spending $6.97 on a double pack of pajamas for JJ. This kid loves his pajamas but he’s known at home as “captain underpants,” lol. He’s quite the character. I also ventured into Old Navy and found myself paying $6.95 on a sports bra–again, amazed that’s all I spent. 

Speech Therapy

Speech therapy went well today for Jaxson. Our speech therapist mentioned that if she brought his hands together for “more” he did it in his own way. He hasn’t tried doing it himself but I think he’s starting to understand the signs when I do it. We’ve been working on teaching him: “more,” “all done,” “eat,” “momma,” “dadda,” and “help.” One of the common features of our DYRK1A children is that a lot of them are nonverbal for quite some time. I hope that Jaxson will start signing back to help communicate what he wants or needs. It’s hard to figure out what he wants sometimes and I feel bad if it was something as simple as wanting a bottle. 

Respite Care

We found an awesome respite care provider! I’m super grateful that I reached out to one of the providers over at Eglin because if I hadn’t, I probably wouldn’t have found her. Jaxson took to her really quickly, I guess children really do have that sixth sense. He did really well with her today, he cried a couple times for me but he played with her for a couple hours and she even got him to fall asleep! I can’t wait to schedule more appointments with her, even my oldest JJ loved her–he gave her a big hug before she left this evening. 
I just wanted to take the time to thank our readers for all of the love and support. I do have a guest post popping up at Motherhood Real Deal soon, it goes live on August 14th! Keep checking back for that link!

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July 20, 2018
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  • Reply Kesi Edwin

    Thanks for sharing you journey! You and Jaxson seem to be doing great! I work in healthcare and we love offering respite to our families its such a good resource to give family members a little break! Thanks for sharing!

    July 20, 2018 at 4:58 pm
  • Reply JaxsonsMomJennie

    Thank you Kesi! I am so thankful for Respite Care especially being a military family. Having family close by is difficult so I love this program!

    July 21, 2018 at 12:52 am
  • Reply Veronika Tait

    I love hearing your story! Sign language can be a big help and I'm sure he'll catch on soon!

    July 21, 2018 at 3:38 pm
  • Reply JaxsonsMomJennie

    Thank you Veronika! I love watching Baby Signing Time with him–he teaches me a few things as well ­čÖé

    July 21, 2018 at 9:57 pm
  • Reply Unknown

    Thanks for sharing your journey. Sign language will be great for all of you! We used it for all four of our children and it's a beautiful way to communicate.

    July 22, 2018 at 6:06 am
  • Reply JaxsonsMomJennie

    Thank you! I'm very excited to learn ASL. <3

    July 22, 2018 at 3:06 pm
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