Category: Baby G and XXXXY Syndrome

Baby G and XXXXY Syndrome – Assessment

Posted December 15, 2015 by Niagara Mommy in Baby G and XXXXY Syndrome / 2 Comments

Hi everyone! I thought I’d post a quick update on Baby G’s progress as he faces the challenges of his chromosomal abnormality, 49, XXXXY Syndrome. We took Baby G in for his assessment at the Niagara Children’s Centre on the 10th. We met with our team, consisting of a social worker, a physiotherapist, an occupational therapist and a speech pathologist. That’s a hell of a lot of “-ists” to remember.

Wow, a whole team assigned to her son to help him with the challenges he's facing with 49, XXXXY Syndrome. Awesome!

Baby G laid on a mat and played with his “teammates”, and some toys that they had brought down to engage with him. He was quite tired, as he’d napped earlier than normal in the morning, but he did very well and even gave a couple of heart-melting smiles.

Each member of the team had their own questions for us, covering sounds, movements, gestures and such. We answered as best we could and discussed our main concerns about crawling and speech, and how difficult it is to decide whether he’s delayed because of 49, XXXXY Syndrome, or because not all kids progress the same way.

We’ve booked our first appointment with the physiotherapist on the 21st to cover a few things we can do through the holidays to help move him forward in his gross motor skills. I’m looking forward to working with him and seeing him progress a little faster.

In the meantime, we’re gearing up for Christmas, picking out presents and wrapping late at night. I’ll be starting to bake with B next week which will be fun, as long as she can hold back eating the cookie dough.

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Baby G and XXXXY Syndrome – Niagara Children’s Centre

Posted November 5, 2015 by Niagara Mommy in Baby G and XXXXY Syndrome / 3 Comments

I’m excited to say that Baby G has made a lot of progress in last week. While his diagnosis of 49, XXXXY Syndrome is definite, it’s difficult to tell whether his delays are because of that, or if he’s just different from his big sister.

Niagara Children's Centre is a fantastic facility devoted to helping children with special needs. So glad she's go this close by to help with her son's chromosomal abnormality

It makes me so happy to see that G has started to clap his wee little hands together, and loves playing this game with his big sister. He’s also begun to wave bye-bye and hello, and has started to respond with much more deliberateness to games like peek-a-boo and row-row-row-your-boat.

However, he’s still not crawling yet. I’m wondering if he might be double-jointed, as the research on 49, XXXXY Syndrome that I’ve read says is common. Could this be hindering crawling? I just don’t know.

In other news, I’ve spoken to Niagara Children’s Centre about his assessment. Baby G will have a full team assigned to him, including a physiotherapist, an occupational therapist, a speech pathologist, and a social worker.  I am having a home visit with his social worker next week to talk about our concerns for Baby G in these areas, as well as any financial help we might qualify for.

It was a relief to hear that because he has had a diagnosis since birth, we shouldn’t have any issues qualifying him. The official assessment is December 10th.

In the meantime, I’m enjoying the last few weeks of my maternity leave with my little guppy. While I know going back to work will be good for me…oh God, I will so miss being with him.

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Baby G and XXXXY Syndrome Part IV – Development Activities.

Posted October 22, 2015 by Niagara Mommy in Baby G and XXXXY Syndrome / 2 Comments

In my previous posts about Baby G and his development, I really only speak about where he is developmentally. If you’ve missed them, you can catch up with the links below:

Baby G and XXXXY Syndrome
Baby G and XXXXY Syndrome Part II
Baby G and XXXXY Syndrome Part III

While where G is in his early development is important, I thought I’d focus on the activities we’re doing to move him up higher on the curve.

As I said in Part III, I’m working with a development specialist through public health to help G along in some major areas of early development, such as gross and fine motor skills, and speech. He’s still not crawling yet, although is certainly moving with deliberate intention lately. To work on moving this forward, I try to lift his bum up so he’s on his knees and rock him back and forth in that position. Sometimes he’ll stay up, but usually when the back end goes up, the front end goes down. I also position him over my outstretched leg on the floor, forcing him to be on his knees and to start using those muscles to reach the toy I’ve placed on the other side.

His fine motor is starting to improve in some areas, like reaching farther, passing a toy from one hand to the other, grabbing, squeezing and banging two toys together.  He really enjoys the sounds he makes tapping his blocks together. I have noticed however, that his self feeding skills have begun to deteriorate as we’ve moved away from feeding him cereal puffs, so that will be something I’ll work on in the coming weeks. He is drinking from a sippy cup with assistance, and I believe he’ll be able to look after that himself before he turns a year old in November.

As far as speech goes, most often he’s still making vowel sounds, with a few “M”‘s and “B”‘s here and there. Public health recommends songs and repeating his sounds back to him, encouraging the sound-mimicking that’s key for speech development. We are seeing some definite sign language with him though, signs like “all done” and “milk”. We’re still working on “bye-bye”, “please” and “thank you”.

I have to admit that while I know how important all of this is for him, there are days when it feels useless. But then he flashes me that sweet guppy smile and I know he’s having fun, so we keep at it. And I guess it’s not a bad thing to be back at work when he finally crawls and starts getting into everything….but I’d still like to see the look on his face when he opens this new door to exploring the world around him.

What activities do you do with your baby to help their development? I’d love to get some fresh ideas….probably more for my boredom than for his development, but hey, mixing it up never hurt anyone.:)

Baby G and XXXXY Syndrome Part III

Posted October 3, 2015 by Niagara Mommy in Baby G and XXXXY Syndrome / 5 Comments

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!