Baby G and XXXXY Syndrome: Progress and Surgery

Posted July 1, 2016 by Niagara Mommy in Baby G and XXXXY Syndrome / 2 Comments

Progress in dealing with the challenges that come with having a child with XXXXY Syndrome

Watching your kid reach a milestone is one of the most precious moments a parent can witness. The first step, the first word, even the first time using a utensil successfully can send you into parental bliss, professing how smart, bright and wonderful your child is. And rightfully so; it truly is amazing. But when your child has a disability, that feeling is magnified twice over. Knowing that Baby G has XXXXY Syndrome and knowing the delays and extra challenges he’ll have to overcome, just makes him surpassing them so much more rewarding.

Progress in dealing with the challenges that come with having a child with XXXXY Syndrome

In Baby G’s case, his extra chromosomes are no match for his will and determination to explore his world. We’ve seen a few new achievements over the last month that assure us that he’s on the right track.

Progress
He’s much more confident crawling, scootin’ around the house, chasing us and his big sister in a game of tag. He’s very much into playing now, and likes to pull himself up on our coffee table to sneak a quick play with B’s big kid toys. We’ve seen him push off a single knee, in his attempt to climb stairs which was a big accomplishment that we hope to see more of. D and I are working on squatting and pushing off his feet to facilitate more strength in his hip flexers and thighs. And with going to physiotherapy weekly, and our care provider implementing gross and fine motor strategies, this kid, when he’s ready will be off like a shot.

He’s still not transitioning on his own from belly/all fours to sitting up. His go-to strategy on the floor is to grab a toy and roll onto his side or stay on his tummy. We’re still working on this, and our physiotherapist says that as he progresses, he’ll naturally fill in the gaps where he’s lacking.

As for fine motor skills, I’m seeing improvement in his accuracy picking up small things like cheerios, as well as shovelling and pouring sand into a bucket on a trip to the beach. We’ve found that he’s not fond of sitting on sand though, and we think it’s because it’s not a stable surface. He was extremely timid in moving around and fussed quite a bit until we picked him up. Anyway, his reaction was very interesting.

Surgery
On a more serious note, a few weeks ago, our family doctor asked us to take Baby G in for an ultrasound on his genitals, as he was pretty sure when he saw him at his 18 month check up, his testicles had ascended. Basically, while the “wee boys” that were once descended and happy, have freaked out and snuck back up inside Baby G’s pelvis.

The ultrasound confirmed it. So what does that mean? Well, it can lead to issues with fertility if not dealt with. Now in Baby G’s case, his fertility is definitely in question already with his extra chromosomes, but if there’s even the slightest chance for him to become a parent, D and I have agreed that we want to give it to him.

So we made an appointment with a specialist in August, who will go through the procedure and exactly what will happen and what we can expect during recovery. As far as I can tell, this issue is fairly common in boys, so I’m not too concerned about the problem itself, but the idea of my little guy being under the knife just makes me anxious.

Anyway, now that the summer’s here, we’re looking forward to lots of pool time with the kids, sunny days and hopefully some serious cruising around the furniture from Baby G. I want to take a minute though to thank everyone who’s expressed interest in reading about Baby G and XXXXY Syndrome and how my family and I are tackling the challenges that come with it. It makes me happy to know that I can share what we’re seeing and at the very least, let other parents like us know that they’re not alone.

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Hugs,
Vickie


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