Hello? Is anyone there? Hellloooo?
It’s been more than two months since we’ve given you an update on What We Made. Two months of wireless days and sleep-filled nights; two months of countless drafts of posts started but not finished; two months of happiness wrapped inside a no news is good news mentality.
But, despite no news being good news, there is a lot of good news that’s not being shared with everyone who loves our favourite preemie. Today we had more good news when we saw Dr. Dee, and at this point not keeping everyone updated on all of this good news has now become downright criminal. Since many of you have shed tears with us in our struggle to get to this point, it is inconceivable that we would deprive you of what we’ve all been working towards. Praying for. Trying to imagine despite however far away it seemed at the time. You’ve all been very patient and understanding with our silence recently and please just know—it’s not you, it’s us. We’ve been preoccupied with getting back to normal living, at least for a little while, and carving out and defining some new dynamics, while simultaneously getting ready for some big changes around the corner. So… let’s catch you up, shall we?
At our respirology visit back in March we were given the OK to drop the daytime BiPAP and it was spendid. All of a sudden, Nyana only had BiPaP when she slept. When she was awake, we had her on an O2 tank with nasal prongs which usually meant she had a 7m tube attaching her to a big tank. With the tank in the middle of the apartment, she could easily access most areas of the main living room, with a bit of overflow to the hallway and kitchen. She would get hung up on toys and furniture and invariably get tugged off balance, but it was a form of freedom. No mask on her face, no forced air into her lungs, just her on her own with a constant supply of the best oxygen money can buy. She did so well without Mr BiPAP that our respirology visit in April granted us the all-clear to lose the daytime oxygen as well. So, for the past four weeks we’ve been weaning her off the oxygen and she is now enjoying her days tethered to only Mr Foodpump, and he comes with a backpack. So, our good news lately? Nyana now has free access to run around the apartment without being tethered—after months of waiting, we finally have our wireless baby. Well, she’s kinda like “90’s wireless”, but still! Close enough. And now, at today’s respirology visit, we were given the OK to start trialling her afternoon naps without BiPAP, too. As long as she holds her sats and resps, she can continue without Mr BiPaP for naps. We run her afternoon nap tomorrow with a sleep study machine, and depending on the results of that, we may be able to lose Mr Compressor (no oxygen during her nighttime sleep) in about a week. This means that she will be without an outside oxygen supply entirely, for the first time since… ever (?), and from the time she wakes up in the morning until the time she goes to bed at night, she will be breathing 100% on her own—just her and the healthy lung tissue she’s spent all these months growing. We’re so proud of her. She’s all kinds of awesome in so many ways. We marvel every single day at how much fun she is, and how much she lights up our lives. It would take all night to document a list of things we love about our lives as we now watch her grow from our Babygirl into our Little Girl.
No, I bet I can do it quicker than that.
She has such an infectious laugh. I’m sure every parent thinks this, and who can’t laugh along with a toddler when you hear it? It’s a gift to have in the house, and it doesn’t take much to get her giggling up a storm these days. She’s ticklish just about everywhere, and loves raspberries on her tummy. Being forced to kiss Dad’s prickly cheeks, or getting a hardcore game of peek-a-boo on, I’m addicted to that little laugh of hers.
They really are little sponges, aren’t they? Every day we see the wheels turning, and every day she surprises us with things she couldn’t do or didn’t know yesterday. Her vocabulary is growing slowly—in addition to Dada, Mama and cat, we now have a whole host of new words including ball, dog, push, door, walk, hi and bye, nose, cheese, and a new one learned just in time for her recent trip to the aquarium, whale (adorably pronounced WAY-yo).
This girl loves the outdoors. She is forever getting into her box of shoes and socks and parading around the house with them saying “door” and “walk”. If she’s in her stroller for an outdoor adventure, she will pull her pant legs up to her knees and kick her feet happily against the footrest, or she’ll pull herself as forward as she can, and then wave and exclaim “Hi! Hi!” at everyone passing by. It can be a little startling sometimes if you’re just zoning out and then strangers just start waving at you. It takes a moment to realize that you’re pushing around the happiest toddler in the world and she’s waving hello to everyone. Sometimes we catch her trying to take big gulps of air, as if the fresh air on her face is the best thing ever. Don’t even think about putting the stroller cover on during the rain, either! She will begrudgingly allow you to extend the canopy shield of the stroller itself but will claw, scratch, and pull at the plastic rain cover if you even think of putting that on. Seriously, she broke the velcro tie at the bottom and she verbally freaks out while she does all this. It is a last resort option only, but strangers with opinions don’t see all that. We have definitely gotten more than our fair share of dirty looks for it. How dare you let your poor child get rained on like that? Why I ought to… Yeah, sure. but she’s quiet, ain’t she? It’s true, too—she sits quite happily bouncing her feet and cooing in the rain, she loves it! But even better than walks in the stroller are walk walks. Just the three of us and a pair of shoes. She loves exploring the grass and the flowers and the stairs of the neighboring apartment buildings. She’s such a good walker, and has even taken a few nasty spills with relative ease. At this point though, what’s a little faceplant when you’re fed with a tube that sticks out of your belly?
Speaking of food, this tubie has a huge palate. Mr Foodpump is still spending a great amount of time with us and he’ll be with us for a while yet. But without Mr BiPAP getting in the way during the day, we’re free and clear to practice her oral feeding at any time of day, a chore she finds most enjoyable. She’s started turning up her nose at the mash on her plate and has taken to signing “more” while pointing to the dinner on our plates. (she can sign. “more”. we’re still working with her on “help” and “thank you” but hey, it’s a start). Inevitably this means that Nyana is learning that she likes what Mum and Dad are eating which often translates to spicy food. She has passed on her own plate for mexican beef on tostadas, butter chicken, falafel with tahina, and chicken curry stew, just to name a few. We’re working through typical feeding issues now, but are a little blessed to not have the urgency to eat that most kids go through. She can play with her food and eat as much or as little as she likes without too many repurcussions, so it’s nice that there’s no pressure around eating, and she loves it
She has two favourite TV shows. I know most people will frown upon this (so save your nasty emails) but she does watch a little bit of TV. Not a lot—she’s surprisingly choosy herself when it comes to actual shows. One of the two is all about words and letters and spelling and she gets quite excited about that (emphatically so, sometimes). The other is all about playing and dancing and socializing. For all the parents in the house, we’re talking Super Why and Yo Gabba Gabba. These two shows are the only two that she will always drop everything else for, although she does have a zombie-like tendency to get intermittently distracted in general if anything else is on, kids show or otherwise. It’s not a really proud moment per se, but it leads beautifully into…
She LOVES to dance, she loves music. Shake your head and wiggle your hips! Hands up! Dance! Holey moley, does she love a good beat. She knows when Justin Timberlake is in the stereo and when it is (and so far, only when it is), she will turn on the stereo herself, get the CD playing, and just start shaking back and forth. She’s done it more than once, so it’s not just a fluke, and she hasn’t done it yet with any CD other than JT. It’s pretty adorable. She’s also pretty sick with that drum Uncle Dave got her, and if she can play a good beat that someone else can groove to, she gets the biggest smile and is in total toddler heaven. It’s a good thing Daddy likes to dance, too.
Buy Crayola stocks now. She’s not eating them anymore, she’s actually using them as they were intended! She loves to use crayons and is copying and practicing as much as we can tolerate, which seems to be at least once an hour these days. She’s a maniac.
OK, I was wrong. I don’t have all night to type things that are awesome about Nyana. I bet I could, but I gotta get some sleep or she’s going to run me into the ground tomorrow. Before I go, there is still some more news. You regulars know that the best bits are always at the end. You have to read all the way down!!
We are moving, finally, to a bigger apartment. We found a place out in Burnaby that’s a 2BR so now there will be bedrooms for both us and the kids. We’re pretty excited about it, it’s roughly the same size-proportions as the place we’re in now, except it has two bedrooms. A nice master room for Mum and Dad (finally!! seriously, Karen is asleep less than 10ft away from me as I type this) and a room for Nyana. There are two balconies which we are very, very excited about – one of them is off the master bedroom! Neither of us has ever had anything like that before, so it’s a pretty cool selling point. It’s a fresh kitchen and flooring reno, and it’s right in our budget – it’s also located between three schools and across the street from a big mall. There are big parks all over the place and a skytrain station that is literally at our back doorstep. It seems like a pretty perfect place to set up the Sunshine Brigade pennant for a little while. While we…grow.
…Ny’s a big sister.
Or, will be in December.
(Go back and read that again to make sure you got it right. You did.)