Henry, Dup15q

How’s Henry? A Little Update on our Super “Duper”

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My little Super Duper Henry is almost 3 years old and seeming more and more like a big kid every minute! I call him a “Super Duper” because he was born with Dup15q Syndrome – a tiny little extra duplicated piece of the 15th chromosome. For some background on Henry and Dup15q, check out this page on the blog, and for more about Dup15q syndrome, check out dup15q.org.

In many ways, Henry is developmentally younger than his actual age. He is nonverbal, he has only been walking independently for about six months, he can’t feed himself without help or use a potty or a long list of other “can’t do’s” which I won’t torture myself by listing. But in other ways he really is becoming a big boy! His walking continues to improve and slowly, he is becoming more willing to walk when we’re out and about – he’s used to being carried or riding in a stroller, so sometimes getting him to hold my hand and walk is kind of like trying to convince a cat to hold my hand and walk with me, but like I said, we’re making progress. Baby steps – literally! He wears “dinosorthotics” give him a little ankle support.

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Henry is also making progress with communication. He’s doing a lot more babbling, and even imitating which is new for him. He is doing really well with his new speech therapist! He has started leading me places to show me that he wants to do something – usually the playroom or the kitchen table :). He is still occasionally using signs for “more” and “milk” and he is starting to do some hand motions to songs, which is really exciting for me! He loves songs like Wheels on the Bus, Itsy Bitsy Spider, and  Pat-a-Cake and he usually puts his hands on mine, wanting us to do the motions together, but sometimes I can get him to do some motions on his own.

Of course, he still relies a LOT on crying and whining to communicate… but I suppose that’s partly his age, right? I mean, he’s 2 going on 3, there’s gonna be whining, amiright?? In fact, I feel like I am seeing fewer sensory meltdowns, and more just regular toddler tantrums triggered by not getting what he wants (whether it’s because he can’t tell us what he wants or because the answer was no), instead of being triggered by overstimulation. Which is interesting. Though, the tantrums are no easier to deal with than the meltdowns, so in some ways it feels like there’s hardly a difference.

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Introducing: The Chewy Tube!!! Hallelujah and thank God Henry has finally started using chewy necklaces. This is a huge relief to me because it is such a big help with the issue of Henry wanting/needing to put every. single. thing. into his mouth. I could hardly take him to public play spaces because he’d just be licking every toy he picked up! The chewy necklaces give him something safe that he can carry around and put into his mouth to satisfy his oral sensory needs. This frees up his hands to play, keeps him from getting his germs all over toys and other stuff, and helps keep him from putting potentially unsafe objects into his mouth.

Now, admittedly, the chewy necklaces are not magical, and they don’t keep Henry from putting other stuff in his mouth 100% of the time, but it’s a big improvement. When we took his pacifier away after he turned 2, I immediately tried to replace it with a chewy pendant and it has taken this long for him to decide that he likes the chewies and is willing (sometimes) to wear them around his neck. Here are Henry’s favorite chewies:

RaZ Teether – Grapes

Knobby Texture Green Chewy Tube

Yellow Chewy Tube

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Henry has also been doing great with his new occupational therapist – though I will say, he keeps getting irritable about halfway through his therapy sessions with both therapists. It’s hard for him to make it through the entire 50 minutes, but that aside, he is definitely making progress with the skills they are working on. He’s working with his OT on hand skills like stacking toys, interlocking toys, shape sorting blocks, and puzzles with large pieces. He still needs help with these toys, but he’s able to do much more than he was a few months ago! Here are some of our toys that are similar to the ones his OT brings: Melssa and Doug 3 Piece Puzzle, Green Toys My First Stacker,  Battat Sound Puzzle Box.

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Henry’s OT also brings a Sit ‘n’ Spin  which Henry LOVES. Here’s a short video of Henry on the Sit ‘n’ Spin with his therapist 🙂

Henry is doing well health-wise. We still have some trouble getting him to wear his BiPAP mask, and unfortunately I think that will only get harder as he gets older, but we are doing the best we can and his pulmonologist was really positive and said he’s doing fine.

He loves playing in the kiddie pool in the backyard now that the weather is hot. He loves the hammock. He still loves music and listening to the washer and dryer running!

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It feels like there are a lot of tantrums these days, which I assume is a combination of his age and his syndrome (sensory needs, communication difficulty, that kind of stuff). The tantrums are so hard on all of us. But when Henry is happy, when he is feeling good, it’s like the sun shines a little brighter. His joyfulness radiates. He lights up the room.

I know that the tantrums are a part of him growing up, becoming more aware, knowing what he wants and finding ways to communicate. It’s encouraging to see him making progress in both speech and occupational therapy. In just a couple of months, Henry will be switching from home therapy to therapy in the public school system. He had a big day of evaluations a couple of weeks ago and I’ve got his very first IEP meeting coming up at the end of the month! More updates to come when I find out what his therapies will look like for the school year!

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