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.

Follow me on Facebook and Twitter for more updates on Baby G and 49, XXXXY Syndrome, or click over there to subscribe, and I’ll see you in your inbox. Thanks for reading.

Hugs,
Vickie


No Sick Days: Such is Parenthood.

Posted October 29, 2015 by Niagara Mommy in Mommy Stuff / 4 Comments

No Sick Days for Mom

I’m writing this post in a drug-induced state. Why, you might ask? Because after having my daughter home from school for two days, my son throwing up on me twice, and my husband soaking our sheets in sweat, my immune system finally said, “Oh, fuck it!” and laid me out.

It was inevitable. There was no negotiating it. Such is parenthood.

Usually, my immune system is the champion of the household. I hardly ever get sick, and if I do, it’s most often a paler case than that of whoever walked in the house all disease-ridden. But this is one of those rare occasions when Mommy is most definitely sick.

But even with my husband available to watch the kids, I still struggle to make myself rest the way I need to. There’s always that voice in my head, keeping me awake, keeping me aware that I still have responsibilities, and there’s no union that’s gonna push back on my behalf.

It’s all on me to get better now.

Gone are the days of my sweet mother looking after me when I’m sick, making me a grilled cheese sandwich and a hot bowl of soup to warm my insides. And while my husband would gladly take care of me, he knows that the best way for me to get better is to mind the kids and make sure their needs are met.

We’re a great team that way. 

But again, there’s that running list in my mind: Pay the phone bill, pay the credit card bill, feed the baby, feed myself, take my vitamins, have a shower, pick up B, gotta remember to drop off B’s day care registration next week, gotta contact G’s day care and arrange for a day trial, gotta do this, gotta do that…

I struggle to turn it off, even when my body is screaming for my mind to shut the fuck up. Wouldn’t it be nice if my mind would call in sick, along with my body? I could get the rest I need, without worrying, without spinning, without overthinking myself into oblivion. I gotta work on that.

For now, Buckley’s will have to do.


Try to Eat the Wind

Posted October 23, 2015 by Niagara Mommy in Uncategorized / 1 Comment

It’s been pretty windy here. It might be my favourite thing about fall, aside from the colours; that kinda goes without saying. But when a strong breeze starts blowing, I swear it makes me want to grab a throw, sit in the rocker on my front porch and sip my coffee…yup, straight out of a Pinterest shot.

But I love the feel of the wind across my skin, and through my hair

…yes, even when it blows into my face and sticks to my lip gloss…sigh.

But it’s the sound of the wind I find so relaxing. It covers the noise of traffic near by, and the crunch of the garbage truck mashing the week’s trash into oblivion. It drowns out the mechanical to make room for the natural. And it makes me breathe a little slower and relax a little deeper. It let’s me stay a little longer and sip a little sweeter.

Until the baby wakes up…then I bring him out with me,

so he can try to eat the wind.

autumn day

 

716vi9


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.:)


Attachment Issues: How We’re Learning to Let Go

Posted October 15, 2015 by Niagara Mommy in Mommy Stuff / 2 Comments

“Where’s Mommy? Mommy? MOMMY!!!!!”

“Mommy’s gone out.”

“But WWWHHHHHYYYYYY?!?!?!?!?!?!?!”

 

*sigh* I’m sure I’m not the only one who’s experienced this.

 

At a very young age, your kid decides that you’re not allowed to leave the room without them. E.V.E.R. Not to use the bathroom, not to make dinner, not to have a nice hot bath, not to blow your nose, brush your teeth, or even to clip your toenails.

But more importantly, you are not to ever leave the house for any reason, especially for some obviously unnecessary mommy time.

 

My daughter began this phase when she was about 10 months or so, screaming for me if I left the room. Not entirely abnormal, right? But as she got older, it got to the point where I would have to sneak out of the house, just so my husband could do bedtime.

 

It progressed into her noticing me try to sneak away and demanding a hundred hugs and kisses before I left, followed by tears, tantrums and finally sleep.

The guilt was excruciating.

I felt awful about leaving her, and even worse for leaving my husband to deal with what I knew would be an exhausting night for him. I felt angry that she couldn’t let go of me, to let me take care of myself. I was jealous of my husband’s ability to go out whenever he wanted, without breaking his daughter’s heart for leaving. And I felt so selfish for wanting a break.

 

Now at the time, I didn’t feel like I’d been over-protective of her, but I was definitely set in our routine.

 

I craved it. It meant that there was a set amount of time for playing, eating, and most important, for sleeping. The nap was crucial to my sanity and survival. I could eat, sleep, go online, watch crappy daytime T.V., have a shower, whatever I wanted. Whatever I needed.

 

Being away from the house, away from my mommy arsenal, was a big upset too. Rooting around in a suitcase for a soother, searching everywhere for a receiving blanket, hauling the gear to go to the cottage for a weekend…it was just so much easier to stay home, where I knew where everything was. Where I had control.

 

I realize now that while all this was normal, my anxiety about our routine may have folded my daughter into a box that I wasn’t intending to build. Insert more mom-guilt here.

 

But today, it’s a little different. Leaving the room isn’t an issue anymore, and we’ve changed up our bedtime rationale to “fighting” over who’s turn it is to take her to bed.

 

To her, it’s now a highly-coveted privilege to read her stories and cuddle up, instead of a dreaded nightmare of flailing and fighting with Daddy, while Mommy goes out to get away.

 

It’s easier to leave the house now, with hugs and kisses and “see you in the morning”‘s. She’s also responding to “I’ll check on you when I get back.” It validates her feelings, and reassures her that there’s nothing to worry about.

 

There are some new issues though, like when she tries something new. She struggles to pay attention or even participate if I’m there, but it seems as long as I’m not in the room, she does well.

 

She’s slowly understanding how important my “mommy time” is, and I’m so grateful. At the same time, I’m understanding that if I’m not directly involved in her “something new”. she’ll respond to the experience well.

 

And for now, that’s the way it will be.

 

And while it does make me sad sometimes, I know we’ll both be better off for it.

 

 

How have you managed this? What changes did you make to help ease them out of their attachment?