Milestones

At 14 months (er, 16.5 adjusted – is it strange that I NEVER think of them in terms of their actual age?):

Bumbo
I can play my keyboard, pick up a spoon and chew on it, and sit with support (though I do find it tiring after a few minutes)

AFOs
I can also roll from front to back (and probably from front to back, except I hate to), pout when my therapist comes, and laugh at my brother’s silly jokes. I can stand if my waist is supported. In my AFOs I can also stand if you are just holding my hands.

Toy Car
I can also ride in a toy car (but make sure you lock that door!) kick in the swimming pool and I am starting to babble lots more.

Bubbles
As for me, I can sit independently, climb stairs, crawl (though I prefer the bunny hop), say Mama, Dada, Mah-go (Margot) (a few other words too) and sing along to Roly-poly

Ride on Toy
I can also have tantrums, pull apart my mother’s purse and scream louder than anyone in the house

Swing
Oh, and I can steal my sister’s toys or sit on her play tray, but I also give her lots of zerberts and pats.

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Sweet Little Shrug

Okay, this is a bit of a cheat, because I knit this months ago when I was on maternity leave, but I finally got around to sewing buttons on, and I don’t think I ever posted it, so here you go! A sweet little short-sleeved cardigan.

Shrug

This was a super easy knit, basically made because I wanted to use up some Cascade I had kicking around from my aborted attempt at a blanket. But it’s a practical little item, and I think it would even fit Miss M as a little shrug over a dress. Oh, and without sleeves it knits up so quickly!

C in her baby shrug

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Crochet

The pop blanket continues…

Pop Blanket Progress

Also, I’m learning a new needle art – crochet.

Crochet

It’s a bit of an adjustment for me. I’m at the point in knitting where I can “read” my stitches – recognise mistakes, purls, increase and decreases. I can count rows and can figure out how to get where I want to go. With help from Youtube, I feel pretty competent at most projects. But I can’t do that with crochet, so this is a challenge for me. If I make a mistake, I just rip it all out. Casting on is much harder than in knitting, at least if you want to make sure you have the right number of stitches. I recognise now that this may be a function of the yarn, which contains merino, and has a tendency to stick together. It is not very forgiving. That said, once you get going, it’s very quick, so that’s appealing.

I originally wanted to learn to so I could use it to seam my pop blanket, and also to do edgings and stuff. But now I’m starting to be intrigued by stand-alone projects too.

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Pop Blanket Update

Well, I’ve got nearly enough little squares for a baby blanket, but I don’t have much use for a baby blanket. I’m thinking I want it to be at least throw size, but that would mean, by my calculation, about 80 squares to make it 50″ by 60″. Which means I have a lot more knitting to do.

Also pondering whether I should do it rainbow-styles, or random. Decisions, decisions.

These squares are upside down as I was drying them in the sun.

Blocking the POP Blanket

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Summer

I’ve been off knitting for a while – hard to deal with bulky wool when it’s 30 degrees. But I have a new project perfect for summer. The pop blanket! Wee little colourful squares that are fun to knit, knit with Noro so you never quite know what colour the next square will be.

Pop Blanket
Okay, these two look kind of like boobs, but imagine more! In blanket shape!

What else is up? The garden is growing.

Garden - July

The big kids took horseback riding lessons, which Miss M in particular adored.

Riding

C and I had fun in Stanley Park. Not sure why my hair looks so ’70s unwashed here, but since the Coco-monster looks cute I will post anyway.

Fun in Stanley Park

B learned to climb and torment her sister. Darn, thought I had a better picture of her riding in my new front-bike seat, but I can’t find it.

Bea climbing
And since it’s late and Flickr is being finicky as usual, more later!

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Difficult Questions

A few weeks ago, while we were at C’s physiotherapy session M wrapped her arms around me and said “Why are C and B different?” I couldn’t think of a quick answer, but M is nothing if not persistent. “Why are they different????? WHY???” I can’t remember what I muttered, but I didn’t do a very good job since we were in a session with three therapists, and two cranky babies. When I tried to return to it later that evening she seemed to have forgotten.

I’ve been open with the kids about C’s brain injury. We tell them that part of her brain that helps her move got hurt. It’s possible that her cognition or vision or other things are affected as well, but we don’t know that, and so we haven’t gone there yet. To me she seems as intellectually aware as any other baby, and that’s how I treat her and wish her to be treated. Sometimes I wonder if I am too open, as P happily blathers about it with random strangers. Other times it comes up in a nice way – like we watch a show called Signing Time. I explained to the kids that the lead little girl’s sister also has an “owie” on her brain like C, and that she appears in lots of the segments. M was very pleased by that. Sometimes I wonder if “owie” is an appropriate way to describe it, but it is an injury and I’m not sure it’s useful to get overly technical.

Last night as M was brushing her teeth, and I was putting one of the twins down, I heard her ask “When will C’s owie get better?” Then I overheard a very calm, patient and lovely explanation of neuroplasticity, aimed at a four-year old. The broken part won’t heal over. Other parts of her brain may try to take over what the injured part would have done, but they might not do quite as good a job. P came up from the bath spluttering “NEVER?” “But won’t skin grow over it?” asked M. “How big is the part that’s hurt? Show me on my hands.” The truth is we don’t really know, and J never saw the scans, but I think he went with “thumb.” Probably more, but thumb is good.

“You mean she might never run as fast as I do?” Probably not. “Even whens she’s SIX?” We hope she’ll walk by then, but maybe she’ll need a walker, or even a wheelchair if we’re going far. But she might be very good at other things. Then later, M putting on her pyjamas, she was singing, “But I want a wheelchair. I want to be the one in the wheelchair.”

These are the questions adults don’t ask – but kids get right to the heart of the matter. These are surreal conversations, and they are difficult ones. But they are very healing in their own way.

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Sitting!

We were feeling a little low earlier this week because we felt like things were kind of static. Today Miss C prop-sat for over a minute!! This is a huge milestone for her as conventional CP predictions are that if a child can sit unassisted by age 2, they will be able to walk unassisted, at least at times. She’s done it before for short periods but never as long or with as much control.

Today we start swimming lessons!

Big girl Cora sitting on her own!

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The Juggle

You know, I don’t write in here as much as I should, but it’s not for lack of things to say. There are always flowers growing, things I contemplate knitting, adventures with the kids, sadness, happiness, the whole gamut.

It’s just that there is so little time. I get home at 4:30 and make dinner, feed them, do C’s exercises, try to stop B from eating Lego, watch the older kids bicker or make potty jokes, yell too much, maybe drive someone to soccer. After they’re down there are dozens of dishes to do, e-mails to therapists, school forms or camp forms to be filled out, plants to be watered and maybe, just maybe half an episode of Orange is the New Black.

It’s a juggle. I often feel like I don’t have the patience for my older kids that I wish I did. A trip to the beach or the aquarium would be such a breeze with the two, but when you add two infants it feels more like trek in the Himalayas. Storytime is often drowned out by tears of a baby going to sleep. The babies are easier in some ways because it’s impossible to get mad at a baby. I know this time is temporary, but C will always need me a little more and I’m still figuring out what that will look like and mean for the other three. They do love each other a lot though. All four of them have these interesting little relationships with each of the others, and I’m grateful for that because there’s only so much of me to go around.

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Jogging Along

A year ago, we were still hoping we’d get out of this whole CP thing, perhaps with it not being too noticeable or too obvious. Based on what we’d been told, we knew that was probably unlikely, but we were still hoping. At that time, the thought of a kid who needed a walker, or a wheelchair, was kind of terrifying. Four months ago I bristled at the idea that we needed supportive seating – I still want her to sit independently, ASAP.

I’m learning patience. I still do want those things to happen – walking and sitting. We still work very hard, several times a day, to get her sitting, rolling, bringing things to her mouth, touching her toes. And we see results from that. Today she grabbed the curtains as I went past, which she could not have done a month ago. But we are getting referred to a centre that will provide us with “equipment.” We are talking about getting her a walker. Except now I’m excited about a walker. I still hope this equipment is a stepping stone in helping her eventually walk and sit independently. But I see how much C wants to sit up and be part of things, and how lately she gets left behind on the living room carpet while the other kids move from room to room. The possibility of equipment is no longer scary. I’m actually relieved that her therapists think she may be capable enough to move with a walker.

And that’s me, jogging along the path of acceptance. I still strive to be like one mother I met who said, without pausing, “I wouldn’t change it.” I can’t say that quite yet. I’d love things to be easier for her. But I do know I can’t change it. I still find I have triggers that bring me back to the NICU and birth and reliving it all over again. There is still a boatload of uncertainty. But I’m learning that instead of suppressing those feelings, I need to just RUN INTO them full force. Let them wash over me like a wave. Then I can take a break and say “Walker, here we come!” At least I hope we’re coming. Like everything in this place there’s a wait list. If it takes as long to get a walker as it did to get someone to give me some advice on feeding, we may be waiting awhile.

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11 months

One of the things I like to do with C’s therapist is talk about the small changes we see each week. Because, big picture, development is slow. At 6 months I thought C was close to sitting. At 9 months I was positive she was nearly there. Now, at 11 months (adjusted! I never think in “actual” terms.) we aren’t really that much closer. By focussing on the little changes, we keep momentum.

C has made enormous progress in many ways. Months ago I wasn’t sure if she’d ever use her fingers and hands as her arms were often just pinned to her side. Now she can move them, spread her fingers, and she works very hard to guide things to her mouth. Months ago she used to lay on the carpet, barely moving (but always smiling at everyone!) Now she wiggles up on her side, rolls from tummy to back, kicks her legs and arms, reaches for things, and can sit for a little while with just a little support. On your lap she will wriggle and move.

C can prop herself on a tray for quite a long period. Propping on the floor is much harder for her. Her hands still fist in this position as most of her energy is working on keeping up her head.

This is what she looks like when she gets tired. She’ll start to lay her head down.

Oh, and I had a crazy idea recently. A family friend pointed me toward some research on kids with CP and getting them moving earlier in modified toy cars. I see how B is learning to navigate her space – to move around chairs or crawl over items. C, being immobile, doesn’t get that education. I was trying to think how we could encourage her to do a crawling movement. I think I had seen a video of a child on a scooter board crawling around somewhere. So I ordered one and tried her on it. We’ve only tried it a few times and she wasn’t too impressed, but an added advantage is that it gets her propped up into a sort of “hands and knees” position and encourages her to lift her head. You can see here how her left arm is more involved than her right. The right one, which is less prone to spasticity, is relaxed at her side. Her left arm is fisted and twisted with the wrist facing out slightly.

And then she’s tired of being man-handled.

B is always ready to help. Or steal a toy.

Miss B needs an update too. She is army-crawling around right now, dragging herself very quickly. She is starting to bring herself to knees, but hasn’t quite got the true crawling down yet. She hates to bear weight on her feet. She also has five words, which is crazy for a tiny thing. My others didn’t talk until past one.

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