Jaxson Update | 11.09.18

Occupational Therapy: 

Jaxson had his Occupational Therapy consult a couple weeks ago. The therapist recommended one hour therapy sessions twice a week, which looks like it'll be on Monday and Thursday mornings. They will be focusing on mostly Sensory (SPD) with a side of Feeding and Fine Motor skills (as mentioned before). They want to strengthen his pincer grip as well.

Physical Therapy:

Jaxson had his Physical Therapy consult last Tuesday and the therapist was pleased with what she saw. She mentioned that he was at age for gross motor skills but was concerned with his feet. She felt that his ankles were extremely relaxed or loose. She recommended we see an Orthopedist to be fitted for AFO (ankle foot orthosis) to correct his feet and hopefully help with his balance. She wants to see him once a week for a few months to work on core and leg strength.

Other Therapies/Referrals:

We had to post-pone his ENT appointment because the referral fell through the cracks some how. The office got the referral from our pediatrician but the insurance didn't. We finally received the boy's medical records from the Naval Hospital in Pensacola. The lady handling their records here will be putting their information on a disc for us. I do have most of Jaxson's referrals and genetic notes but I do not have the rest.

We are waiting to get in with the Neurologist, Sleep Center, Gastroenterologist, Ophthalmologist, and Genetics over in Raleigh.

Communication:

Jaxson has been babbling more and more. Mostly it sounds as if he's saying JJ's name, it's so sweet. He usually says it the most when JJ is at school, I know he misses him a lot during the day. He was so use to JJ being home with us but now he is gone from 7:30 to 4:30 (such a long day!). He also says something that sounds like "da-da," I guess this momma is chopped liver.

The Speech Therapist from CDSA (early steps) has me being more hands on with Jaxson as far as signs. However, when I ask him to do please, all done, and eat he does the sign for "more" or claps. They will be coming by on Friday next week to see how he's responding to me teaching him.

Overall, he's doing well!

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Our Day | 07192018

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!