Baby G & XXXXY Syndrome: Big News

Posted May 26, 2017 by Niagara Mommy in Uncategorized / 0 Comments

Raising a special needs child certainly isn’t easy. The parental worry, the guilt, the wins and losses all seem to be amplified with a kid who needs a little extra help. But sometimes, when you least expect it, the stars align and the universe sends you out some good karma. I know I haven’t written an update on Baby G in a while, but I promise there’s a fantastically wonderful reason for it! But first, an update.

 

Big news about my son's progress with 49 XXXXY Syndrome! How He’s Handling XXXXY Syndrome

Physiotherapy

Our therapist has put her foot down with Baby G, and we’re now standing him up several times a day, as often as possible, holding his legs steady, just under his bum. As he’s gotten stronger with this, we’re moving our hands further and further down, so he’s forced to keep himself upright and improve his own balance through his legs.

 

Because of this, we’ve seen immediate improvement. Baby G is cruising around, and dominating his walker like a boss! He’s even stood by himself with no hands! But alas, he’s still not walking yet. We’ve seen him get up into a downward dog position, as if to bring the rest of his body up to standing. Baby G is also lifting one leg to try to climb up onto a chair or the couch. His confidence in being vertical has increased tenfold, so we do expect to see a step very soon!

Fine Motor

XXXXY Syndrome is no match for this kid’s ability to get food in his mouth! Along with more pulling motions, pointing and participation in action songs like “Itsy Bitsy”, he’s starting to use his utensils at the dinner table. We’re also seeing him wrap his thumbs more securely around his cups, so we’ll be starting to move him away from sippy cups soon, I think.

Speech

Despite his chromosome issues, the G-man is really getting the hang of his baby signs! We’re seeing “car” regularly, as well as “cookie” (of course), “milk”, “book” and now we’re working on “bath”. But the biggest one of all? The one I’m super excited about…is “POTTY”

 

Woo! We’re in full potty training!

 

And this kid knows exactly what to do! It’s amazing how he’s able to communicate without words what he wants to do, and I couldn’t be prouder of him and of our whole family:) He’ll put his fist up in the air and give it a shake to let us know that he needs to go. The success rate, I’d say is about 50% right now, but we’re definitely on our way!

 

How We’re Handling XXXXY Syndrome

And you thought my big news was about potty training?? Nah, I’ve got even BIGGER news than that!

 

A long-awaited update on Baby G's progress managaing 49 XXXXY Syndrome

Niagara Children’s Centre runs a pre-school program every school year for kids like our Baby G; ids who require all three aspects of therapy (speech, fine motor and physio).

 

Only eight children are accepted, and our team suggested that we submit his name for consideration. I’m happy to report, after being first on the wait list, Baby G will start the progarm in September!

 

He’ll attend four mornings a week from 9am to 11am, where he’ll learn with kids just like him, and be integrated with regular pre-schoolers from the on-site daycare. He’ll also be pulled out during those two hours for personal therapy. That’s professional therapy every day! 

 

Baby G will be put in a position to develop among his peers and prepare to start school in September 2018.

 

I can’t describe how lucky we feel and how blessed we are to have been given this opportunity. Our current day care provider and the therapy team at NCC have been so great in getting us this far. The universe is certainly coming through four our little man. And while his extra choromosomes do hinder Baby G’s development, it’s giving us time to slow down and enjoy watching him learn new things, imitating a simple game, or even just smiling at his big sister. It’s like watching little reflections of our family in his beautiful little face.

 

Huh…

 

Well, isn’t that just somethin’ 🙂

 

For more on XXXXY Syndrome and Baby G’s journey, check out the full category on it. Thanks so much for reading.

 

Hugs,
Vickie

 


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