Baby G and XXXXY Syndrome Part III

I’m excited to report that Baby G’s progress and my research have come a long way since my last post on this topic. But, if you’ve missed my posts on 49, XXXXY Syndrome, you can catch up here and here.

Baby G is now ten months old and is as happy as ever.

He’s reached the lower 15th percentile for weight at 16 lbs,12oz, and as usual, is coasting along the very bottom of the length curve. I registered him to have an Infant Development Specialist come to the house to see how he’s progressing. This is a service provided by public health in my area, so if you’re in a similar situation, explore every option you can. You might be amazed at what you can find that’s at no cost to you. Baby G is progressing well, and the nurse and I both agree that he is behind, but only borderline. Aspects of his development that lead us to this conclusion are things like sitting up unassisted, self feeding, fine motor skills and stands with help. However, that he’s still not yet crawling, doesn’t have any teeth and only just has begun making consonant sounds are aspects that pull his development down on the curve.

Again, it’s all relative. I know of children who bypassed crawling completely and went straight to walking. It’s still too early to decide if these things are because of the abnormality, or because he’s just a baby, and all babies are different.

The nurse also suggested we refer him to a local centre for special needs children for an assessment.

I heartily agreed. While he really is quite young, at the very least he’ll be in the system as diagnosed and as being assessed. This centre will offer any therapies he might need: cognitive, speech, what have you. They will offer service into the first year of school, at which point the school would assign someone to be with him throughout his academic years. The assessment should take place sometime in the new year. I was able to find a suitable care provider for him, and as a bonus, she has tons of special needs experience. I’m feeling confident in our discussions as far as his care, what we might find through the assessment, and how delays might pan out.

As I mention in Part I and II, I’m reading up on all of this when I get a chance, including on whether we might qualify for any government funding for his care over the next few years.  I was able to speak on the phone with the nurse that had approached us after Baby G was born. I discovered that Baby G might qualify for some of the same opportunities she’s uncovered for her son.

She also recommended AXYS, a US-based website for more information and support. I’ll be sure to post any more links as I come across them, as well as the development activities Baby G and I work on together. But for now I’m loving working with the Infant Development Specialist. She’s so great with him and is full of great ideas on how to keep him moving along in his development. It also doesn’t hurt that he could be the cutest lil’ guppy she ever did see!

5 responses to “Baby G and XXXXY Syndrome Part III

  1. Jennifer

    Thank you so much for allowing us to follow Baby G and his journey with syndrome 49 , as my son was diagnosed with it as well. My some is 6months old and surprisingly on the same path as baby G. Everything is very similar so thank you for sharing. I will contrive to follow you and Baby G as I found it was very informative and helpful. I wish him well:)

      • Jennifer

        No thank you! Baby G story has given me hope and lightened the weight of fear I had build up. I rely a lot on my faith, but His story and your commitment as a mother in doing everything possible to help him is very encouraging and brings me much comfort😊