ENT and other updates


{Eli swinging at the park and showing off his skillz in therapy. We are so proud of him! He’s doing wonderful!}

Speaking of how wonderful he is doing, we recently had a formal private eval for OT just to see where he’s at.
The therapists at TCH were very impressed. He’s right on track with a typically developing 6mo old and getting stronger every day! Because we love our ECI OT and have so many visits a month, she did not feel that we could benefit from private services at this time. Whew!!! Huge relief! It always nice to get a second opinion. (Proud parents over here for sure. Hehe she said it was clear our therapist is good and that we work with him. Heck yes!)

She gave us some tips and pointed out a few things that we will need to work on in the future and with PT. We have private PT and ST evals coming up soon so that’s good.

His new meds seem to be working well. I know the Prevacid will be long term but I’m curious about how long he can stay on the Rescon GG. The good news is that he very clearly feels better and last night he slept the whole night.
Hopefully I will sleep a bit more sound tonight but I still have some anxiety just because your child not being able to breathe is terrifying.
Just glad to have out happy, bright eyed boy back.

We just had Eli’s follow up to the ENT. Since the ENT we found in our area is cautious about giving Eli tubes (because he has increased risk factors with Ds and has never had surgery) we were referred to TCH. They are wonderful and we love it there. 🙂
They examined Eli and then cleaned out his ears (which he hated). Once she got the wax out she could get a better look at what she was working with.
-He had fluid on his right ear but not the left.
-She had to use the 2mm scope to see since his ears are so tiny.
-She wants to see him back in 3 months to see if his ears have grown. They need to be at least 3mm and he will likely need another set as his ears continue to grow.
-We are working on scheduling an OCRG which is like an infant sleep study. She’s afraid he’s too small for a regular sleep study and that the results would not be very definitive. This is a huge step in the right direction. And with these new meds, we may see some of the obstructed sleep apnea symptoms go away. So we will see.
-We scheduled an ARB for next week to get a feel for what his hearing is. This is a huge answered prayer.

So that’s where we stand right now. I’ve been battling a lot of anxiety recently but the rest is starting to look up! Eli is feeling good and we are looking forward to the weekend together. 🙂
Have a happy Thursday and thanks for keeping up with our little man!

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5 Replies to “ENT and other updates”

  1. You are right to work with a ENT who has experience with kids with DS.

    David had his first set of ear tubes at nine months. He had the tiniest tubes put in. But wow, what a difference they make. He has had several(nine sets actually) total. He still has them at age 12.

    When he was younger, I could always tell when the tubes fell out. His verbalizations would decrease. Once his new tubes were in, he turned back into a chatter box.

    Love seeing Eli’s pics. Keep em coming.

    Hugs.

      1. The tubes need to stay in until the eustachian tubes are big enough to keep the fluid draining. Our ENT told us until David is about 11 or 12. Some kids need them forever. The tubes will fall out and he won’t need them anymore. Right now, David’s tubes are still in and working great.

        Hugs.

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