Daniel update

Every 6 months I have a meeting about Daniel’s IFSP, how he’s done on his goals, what new goals we want to set, and how often we think he needs to see each of his therapists. That meeting was last week and, long story short, Daniel is doing GREAT. He’d met almost all the goals we’d set at the previous meeting (we’re still working on the food throwing issue, but that’s more of a behavioral thing than a motor skills thing) and at the moment there is nothing that stands out as Thing He Should Be Doing But Isn’t. Obviously he’s still delayed, but progress is being made on all fronts at a good rate. Here’s the latest on his progress:

He is now a full time walker! Aspen Grove was a big final push here because he wore shoes all week (something he doesn’t do much when we’re just at home.) Plus it gave him lots of opportunity for walking longer distances and walking on uneven terrain (again, something he doesn’t get when we’re in our house.) So WOO!

He signs about 25 words these days. I’m going to try to come up with them all here for my own record, so just skip down if you aren’t interested in which words. He signs: milk, more, eat, book, bath, car, out, water, done, baby, daddy, play, toy, Elmo (he signs an E), cheese, banana, nap/bed, please, poop, thirsty, up, prayer, and diaper. (I’ll probably come up with more as soon as I publish this, but that’s the majority of them.)

He mimics signs pretty well and tries to say the word with a few of them. (He’s pretty good at the “b” sound, so book and bath always get a “word” with them.) He’ll also say “YAY!” and “hi da” to Brian. He has no name for me and pretty much refuses to sign “mama.” Brian is definitely the favorite. He can point pretty well these days and will often accompany a point with “dat!” when he wants something.

He is getting better at fine motor stuff too: putting the shapes in the right place in a shape sorter, using a pen/pencil/crayon to scribble, pointing with one finger out and the others in a fist, stacking a few blocks on top of each other.

He loves to play “where’s Daniel?” and if you sing him ANYTHING (even made up nonsense) he will wait for you to finish and then applaud and yell “Yaaay!” So, if you’re in need of a self esteem boost, come on over.

He had a sleep study done a couple months ago. Did I write about that? I don’t think I did. Anyway, we went to see an ENT to check on his ear tubes (out, no need for new ones right now) and see about his tonsils (which are big) and then ENT recommended a sleep study before considering a tonsillectomy. Also, apparently the American Academy of Pediatrics recommends that all kids with Down syndrome have a sleep study done before the age of 4. (Sleep breathing issues are common with Ds.) So: sleep study.

Side note, here’s a little amusing story from the ENT visit. We had a conversation at the end of the visit that went something like this:

ENT: How’s his speech?

Me: oh, he doesn’t say any words, but he’s getting speech therapy through Early Intervention.

ENT: So…does he have any other diagnosis?

Me: Ummm, no he’s a pretty healthy guy. We saw a geneticist after he was born and things look fine.

ENT: Oh, so you’ve seen a geneticist?

Me: (Thinking, “Obviously. Don’t they always have you see a geneticist if your kid has Down syndrome?”) Yeah, at Children’s in Denver right after he was born.

ENT: Well he’s got a low palate, so that could be partially obstructing his airway when he sleeps

Me: Right, probably because of the low muscle tone.

ENT (as we’re about to leave): So…he doesn’t have Down syndrome, or anything, does he?

Me: Well, YEAH he has Down syndrome.

Then I laughed because he’d been trying to figure out if Daniel had Down syndrome and I’d been answering all these questions assuming he KNEW Daniel had Down syndrome and was asking about things IN ADDITION TO. Read the file dude. Anyway. *I* was amused.

But back to the sleep study. Brian stayed with him overnight at the clinic where Daniel got to sleep all wired up and looking like tiny Santa. See?

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Results came back fine. His sleep is good quality and since he didn’t have any episodes of apnea there’s no reason to take his tonsils out right now.

He had his 2 year well visit (back in March, slacker blogger here) and he weighed in at 23 lbs 9 oz (10%) and was 33 3/4 inches tall (45%.) He and Will are close enough to the same height that they can wear a lot of the same clothes. Since this visit we’ve also seen a pediatric ophthalmologist and got the same recommendation as his last visit (which was in GJ): he’s slightly farsighted, but it’s mild and he’s still young enough that trying to keep him in glasses would be more of an effort than it’s worth. So! Recheck at age 3.

He loves baby Lydia, but is not very good with “gentle” yet. He wants very much to be allowed to touch her, but his version of that is usually hitting her in the face. Sometimes with a toy. He is also a big fan of taking her pacifier out, sometimes to suck on, sometimes to try to shove it back into her mouth. The other day he walked over to her in the bouncer, smacked her in the face with a toy and then when I picked her up he laughed maniacally and climbed into the bouncer himself. So he’s adjusting to the big brother roll pretty well 🙂

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He continues to be a mostly happy little dude. He’s not always happy, of course, but he is just So! Exuberant! when he is happy. His emotions are all pretty unfiltered though, so when he’s mad we KNOW. It’s fortunate for us his temperament is generally good. And of course, he’s always making new friends.

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4 thoughts on “Daniel update

  1. He looks JUST like Will in that bouncer photo!! Pacey’s main style of interaction with Brighton for the first year or so was to bop her right on top of the head. I can’t believe Daniel is so tall!! And your ENT story cracked me up. I hope that doctor was really embarrassed. I had a weird ENT surgeon experience when Pacey went into get his tonsils and adenoids out. It was super stressful, Pacey had been having O2 sats in the 80s chronically and this was a surgery that NEEDED to be done. It was six weeks before we were due to move states, two weeks before our insurance ran out and Chris had gotten stuck in Denver on a business trip so I had to manage all of it on my own. Anyway, fast forward to the moment they should be taking him back and the ENT appears and declares that there is no way they can do the surgery that day, “look how low these O2 sats are!” I’ve never been so furious at a doctor for not reviewing the patient data before. It ended up fine, the surgery went ahead and it was life-changing for him, but SHEESH. Oops, I just hijacked your comments. Anyway, so happy Daniel is chugging right along. 🙂

    • I was like, how can he not TELL? He’s a doctor! An ENT at a Children’s hospital! He must see lots of kids with Down syndrome.

      That’s crazy about your ENT! How do you not read a file before surgery?!

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