Update | He Keeps Us On Our Toes!

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He definitely does…

This little boy definitely keeps us on our toes! Yesterday morning I turned our bedroom light on to wake JJ up and get him ready for school. That is when I noticed blood on my pillow–I freaked. I quickly got JJ dressed and went to check Jaxson in the living room. He had some dry blood caked on his ear.

I took JJ to the bus stop and waited for the Pediatrician’s office to open and walked in. I’m thankful they worked us in as quickly as they did. Apparently Jaxson had ruptured, or perforated, his ear drum. How I’m not sure. I don’t recall him sneezing too hard or coughing too hard. He does pick at his ear from time to time but she said his fingers wouldn’t have been able to puncture his ear drum.

She prescribed us 10 days of antibiotics and we scheduled a follow up in two weeks. I’m praying it heals on it’s own because I do not want to have to do any type of surgery intervention… however if it calls for that, it is what it is. Just praying the little man doesn’t have to go through more hell.

Orthotics Update:

I picked up Jaxson’s SMOs (a day early) last week and he currently LOVES them. I was afraid he would want to take them off, but nope. The doctor stated that he probably knows that they’re to help him walk and it is giving him stability. I have noticed that he is falling a little less while walking and running down the hall. Less bruises on his head.

Even our Speech Pathologist mentioned how more stable he was on Monday. He did something to make him a little unbalanced and he was able to catch himself without falling. PROGRESS! I hope it helps with his pigeon-toe as well.

Sign Language Update:

Currently we see the CDSA (early steps) here in North Carolina once a month. He hasn’t made much progress in the last couple months. He is doing “more” and I haven’t seen “eat” in a long time. He tries to do “please” but takes his hands together as if he’s signing for “more.” The new game plan for Jaxson is to start speech therapy at the same location as occupational therapy.

Related Post: Jaxson Update | Baby Signs

They want me to sit in with him for the weekly 30 minute sessions so I can watch what the therapist is doing and integrate it at home. I’m hoping to hear back soon about that. Fingers crossed!

Sleep Update:

His sleep is still very sporadic. I’ll have a couple good nights (like last night) and then have a few terrible nights. Last night he let me sleep a whole 7 hours–hallelujah! He’s been wanting to wake up at 4 – 4:30 am and it’s exhausting. However, I’ll take it over waking up at 2 and not going back to sleep until 5.

We have a sleep study scheduled for the end of next month. I’m hoping that it’ll come back just as good as his second sleep study. They are also going to do an EEG to see if he’s seizing at all throughout the night.

Related Post: AuCuTee Review

Overall he’s doing outstanding. He’s starting to grow such a personality and he is babbling a lot more. He’s able to communicate by pointing and handing us his bottle when he’s done. He usually does a little “eh” as he does it to get our attention. He’s also starting to point at the TV to let us know he wants to watch cartoons–very, very smart little boy.

I can’t wait to see where he will be at within the next six months.

Jaxson's Progress #Update #SpecialNeeds #Dyrk1aSyndrome #RareDisease #Awareness #ASL #Development

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3 Comments

  • Reply Sheila

    This is so encouraging. I find myself catching my breath when you report a problem and then I exhale and root him on in his progress. I love all the “checkups”

    January 11, 2019 at 8:18 pm
    • Reply Jennifer

      Awww, thank you so much Sheila! I’m so proud of him and his progress and enjoy sharing it with everyone!

      January 13, 2019 at 9:46 am
  • Reply Lorraine

    If nobody told you this lately, you are a great mum! Hope your days get easier for you and your little one!

    January 16, 2019 at 10:06 am
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