A busy life

Life. It’s a beautiful, trying, evasive, immediate thing.

We’re heading into an adjustment for all as I return to work from my mat leave next week. E has started attending a nearby home daycare and is totally settling right in. A relief. And A will be going up to 4d/wk at his daycare and also moving into a preschool room. The leaves are changing colour.

The wood is piled, the nights are cooling, the wind smells like apples. Every meal somehow incorporates tomatoes and/or zucchini.

Every hour seems dedicated to streamlining. How to smooth down each task, like rocks in a river, so that they eat up as little valuable time as possible, run smoothly and efficiently, feel satisfying instead of draining. In itself, an endless fight against entropy, lack of sleep, the propensity of small children to create endless messes.

To fit in things like visits with friends, strolls along the river, baking seems not yet attainable, but someday, once we all settle into the new normal.

A broke his Kidwalk walker with all his wild jumping – a large, substantial spring literally broken in half! We’re waiting for a replacement to be sent from the States. We’re all really missing his independent, upright time. He’s tirelessly throwing his head back – from kneeling, sitting, standing, being carried, etc. It’s quite exhausting to police and cringe-worthy to watch. Might try a sensory suit and some exercises that encourage flexion vs. extension. A and all his different facets of struggle. Struggle or substance? He’s beautiful always.

We hired a private speech therapist for extra communication help. It was SO HELPFUL to get her input. Working on implementing her recommendations. More on that later.

Still daily seizures for A, but less lately. We decreased the clonazepam and think that might have helped. Maybe it’s giving the ketogenic diet more of a chance, or maybe it’s just not helping period. EEG and neuro appt in a couple of weeks.

Currently half way through my first four hours of child-less time in… almost a year? It feels comfortable, quiet. But I miss my kids. But it’s time. Time for us all to do things apart, receive the richness of life that comes from leaving one’s house, and then come back to each other and share all that we’ve learned.

Giddy up

Lately when I sit down to write here, tedious updates about A’s medical stuff spews forth. Life with A is so, so much more and yet still, every moment is tethered to how that medical stuff is going. Every seizures, and every minute between, is weighted. I hold my breath for the former, and my breath holds me for the latter.

Some crappy ones lately – long and scary. I rock him and coo, “hang in there bud, almost over.” I stroke his hair and coax, “take a deep breath, relax.” I know these words are more for me tho, that I am speaking to myself. A listens but he is busy managing himself in his own way. Then a seizure grasps him, his eyes dart to mine in panic, and I try to smile, I confirm he will be okay. It is for both of us that I keep steady. It is for us both that I soothe, comfort, smile. Together we wait for it to be over, and together we savour the time in-between.

E has started taking steps! He stands, steadies, makes sure someone is watching, and steps forward. Beautiful, courageous, confident, joyful. It is just fabulous, every time. Soon, I’m sure, he will be running. A few days after his first steps, he turned 9 months. Unbelievable, really.

A has enjoyed his own fabulous milestones. At a few months shy of turning 3, he has figured out how to get himself into sitting. Previously, it was something we would plop him into but now he transitions! Beautiful, courageous, confident, joyful. From sitting to all fours and back again.

He also had his first (of 8) horse-riding lessons. Too sedated and ill to attend last session, he was moved to the Aug/Sept round – so thankful he is so much more aware and awake and happy to enjoy it. Dude rocked it – so excited, unafraid. So open and free. I panted alongside, simultaneously holding him up on the horse, resisting his tendency to throw himself backward, yet still encouraging him to sit up straight. I tired to let my muscles celebrate his joy vs. tense from worry. We’ll both get stronger, I’m sure.

Back to CHEO on Monday, to meet with the Metabolics clinic this time. Apparently his poor reaction to valproic acid might indicate… something? Will know more soon. I’m not looking forward to more testing, but definitely interested in whatever more can be learned. Not sure we’ll ever discover “an answer” or anything, but always great to get more clues and find out new things that help him feel well.

Bits and bytes

Sometimes I wonder what I would write about, all these words, if I didn’t have A. Gardening? Web Accessibility? Juggling? Juggling gardening and web accessibility? I’m glad I have my little dudes. They inspire, delight, and amaze beyond anything else in my life.

I brought E to the doc for his 6 month shots and checkup today. So strange having a “typical” child (more like super baby – he’s already crawling, sitting, rolling when most I think are just rolling?!). Everything is just… fine. There are no red flags, or gasps in my heart, or deep-seeded worries. E is just fine, and I feel like he might always be. It’s so… relaxing. Is this what it’s like for other parents or do I feel this way because I have A to contrast?

I bought two of these protective headbands from a curt and unfriendly woman over the phone today (she loosened up at the end, surely corroded by my insistent charm… or was it my mention of epilepsy?). Hoping it could be enough, cos mang, the seizure helmets are not cute. Or comfy? Alas, we might spring for one as well, as A reaches new heights, literally. A jerk into the floor from all fours is one thing, but a fall from walking is another. Fucking seizures! Ahem.

I found an ABM practitioner nearby (i.e. 1.5hrs away), which I’m sort of excited about. Our first session will be on Thursday. They actually recommend doing an “intensive” which = 2 sessions/day for 4 days in a row. Cha-ching! But I believe it when they say it’s the way to go re: neuroplasticity. That brain sure can be stubborn sometimes. Alas, that would be too much of a commitment to start, I think. We’ll see how this first one goes. Or should I at least make it two in one day (one at 10am, one at 2pm)? It’s the beginning of a new THING in which I must JUGGLE (wink) the needs of two childs at once while being away from home and without hubs. E is still exclusively breastfed (with foods starting this week-ish), crawling and into everything, and A is A. Will manage, just processing the details of what this type of day might look like.

Horse-riding starts June 5th, which I am also totally excited about. It is also another THING to process logistically.

Tonight at dinner I thought about Anat Baniel’s recommendation to “start where they are now” and instead of having a regular chat with everyone (A & E, hubs away), we squealed, babbled, shrieked, and giggled at each other. It was ridiculous and I’m glad there was no one around to witness it, but the boys DUG IT. I think they might’ve thought, “uh, what happened to mom? she’s losing it” but it was hilarity. I thought A might want to chime in more if we were speaking with his sounds. It worked a little – he had some things to say. E was in stitches.

Another early bed time. Props to the single mamas out there. Hubs home Monday night. Zzzzz.

E on the move

Spring check in

I haven’t given an explicit update in awhile so here’s where A’s at, spring 2014:

Gross Motor

  • still crawling/bunny hopping
  • using a stander at daycare (about 1/2hr in the morning and same in afternoon)
  • using walker pretty well daily (and now we can go outside!)
  • practising side-sitting from all fours (he gravitates toward “W” sitting which is a no no apparently)

Fine Motor – no real changes but we’re working on:

  • isolating the pointer finger
  • controlled/intentional release of objects
  • picking up finger foods with pincer (he’s still raking)

Communication

  • PECS when he’s in the mood, but he seems willing to make choices more often than before
  • practising “chatting with mom” using Speak 4 Yourself ipad app… he hits whatever buttons he can and we have a chat around it. Ex. him: “fireworks” me: “Oh fireworks are beautiful lights in the sky, and they make loud BANG sounds! We’ll probably see some this summer on Canada’s birthday” etc. I think he enjoys the back and forth – I’m hoping it’ll somedaaaay grow into real pointing at real words he wants to say.
  • still reading a lot of books, which he is always into
  • I’m trying to do a better job of answering possible where/how/whats re: our surroundings, after talking with moms of other 2yr olds and finding out that these seem to be the questions of interest. So I do lots of rambling like “Oh, dad’s at work” “that’s Luna outside barking at someone walking by” “this is called a blender and we make smoothies like this…” etc, imagining A might be asking questions and wanting answers about anything and everything.
  • I’ve tried doing a little RPM stuff with him, talking about a book and getting him to answer questions or make choices

Sensory – another avenue of stuff-doing that I’m paying more attention to

  • cuddle swing (chillin’ listening to music, spinning, bouncing, hands on the floor, etc)
  • dancing with mom and/or dad (he LOVES this)
  • little stretching sessions where I try to tune A into his body (super primitive and totally made up/intuitive, using Anat Baniel’s nine essentials)

I’m likely missing things but this is of course a general list, and leaves out all the wonderful in-between stuff a day might hold. Yesterday I took A for a stroll in the rain, and ended up running fast down the road like a crazy person, squealing and swerving wildly, much to his enjoyment. Today we crawled around the grass. Saturday morn he watched cartoons (after grabbing the Dora picture card)… you know, real life stuff. His seizures around 3-4 times daily, often just one or two jerks each (though they’re strong and sudden enough that we’re getting him a protective headband soon). New neurologist appointment in June.

Making waves

It is strange to have a 4 month old who has skills that surpass those of our 2 year old. It is very strange indeed. Incredible to watch how quickly E advances, from day to day practically, in the way he moves, how he interacts socially, how he plays with toys. Each day he seems to be playing with a little more complexity, picking up subtle nuances in behaviours around him, inching his way closer to a choice destination. We watch him in amazement.

A has been crawling for the last couple of months. I think I forgot to mention it before so I’m mentioning it now, since it’s a big enough deal to be documented! He rarely army crawls now, and is mostly up on all fours. Although you could call it 4-point crawling, it’s more of a hoppity-hop adorable water-spider method, so we’re working on getting him to do the side to side thing by encouraging one knee forward, then the next.

The detail with which we need to breakdown a movement for A is… sometimes astounding. Literally every muscle needs to be taught how to do something, specifically, over and over and over and over. What’s amazing is that it works. Given enough time and practice, he can do what we’re teaching him, and do it well. Just this past fall, when I started this blog, we were excited when A would do a push-up. It’s easy to lose sight of his progress, as it comes at such a slow pace, but when I stop to look back, it is actually amazing how much he has accomplished.

There is no reason for me to think that his next something couldn’t be anything.

A good reminder for me as I stumble along attempts at meaningful communication with A. So far, no dice. His PECS word book isn’t much of a hit, and he doesn’t seem interested in using pictures at all now. Not that he really did much before, but he got the gist and gave it a go. Now he does his “yeah I’m not going to participate in this” type behaviours (closing eyes in absolute boredom, throwing head back, or wiggling away).

The AAC app that I’ve been modelling with is still only that – he’s not interested in interacting with it on his own. I was doing some hand-over-hand pointing with him, but have since learned that’s probably not a good way to go as it encourages him to be passive about yet another thing, an important thing. So I keep on hitting that “more” button before each handful of eats, and the “drink” button before each slurp. ZZzzzz. Maybe we’re both bored of the monotony? Perhaps I need to turn on some better buttons and sit and chat with him instead. I dunno.

I just need to keep in mind that A’s journey is not a quick one. We’re on a rowboat, not a highspeed train. Being on a rowboat is beautiful if you let go of the rush around you, forget the destination, and dip your feet in the water. This is how it will be for awhile. Once he reaches something, there’s always something else. He’ll make waves in his own, quiet way and they’ll reach the shore.

So while E zips by, A will be lolling, but both will be happy.

Good things in the making

Ok, I’m almost well. Hope to get back to posting more regularly now. Seems like there’s a lot to write about – A has been doing really great lately! An updatey post:

Walker
I feel much of his progress should be attributed to the walker. I’ll be sad to see it go once our loan is up, but we’ll likely get funding to buy one of his own… it just might take months. In the meantime, we’ll probably borrow some different walkers, to keep him happily touring around upright.

It’s beautiful to watch his brain start to blossom a little more. The walker’s added a new, needed perspective and I think he’s starting to appreciate the opportunities it’s opened up to him – choosing where to go, standing in front of something to play, opening kitchen cabinets, pulling on blankets, etc. In addition to actually physically walking, he gets to EXPLORE further, and we all know how essential this is to childhood and development. He’s always been observant and curious about things, but now he gets to better interact, and with this his confidence in moving and trying new things has also grown.

iPad
Our household got an iPad for Christmas, mostly to try AAC (augmentative & alternative communication) with A. So far we’ve been doing very basic stuff with him, to get him used to this new friend. There are some free Peekaboo apps that require just one-touch interactions to make stuff happen, which is good for A as his fine-motor is quite delayed and currently his touching-the-screen is more like batting-at-the-screen. He doesn’t seem super interested yet, but I’m guessing it will grow once he becomes more familiar. In the meantime, looking for some basic choice-making apps he can try, for the communication start.

PECS (picture exchange communication system)
A’s infant development worker printed out and laminated some picture tiles for us to try using with A. She also gave me a little velcro strip that I can stick tiles to, so we can create an array of choices. Will be starting with this in the coming week, likely starting with two basics like eat/drink or more/all done.

Integration at daycare
A particularly exciting development is that A will soon be going to daycare 3 days a week instead of just 1. Though I will miss him terribly, I’m stoked for all he will get to do. They’ve finally received funding to hire an extra worker for A, and interviews will be starting next week. The way it works in Ontario is that the government funds an “integration worker” to help out with a special needs kid in the room. It’s not a one-on-one thing – A’s experiences will be inclusive – but extra support, and a point person for keeping things on track regarding A’s development goals, safety, and needs. As well, his plan at daycare will align with what his therapists are working on – everyone keeping in good touch with one another to all strive toward the same goals. The daycare’s programs are adapted if need be so that A can succeed in the activities of the day. Awesome.

As well, daycare and OCTC (ottawa children’s treatment centre) have together funded some special equipment for A at daycare: a chair and a stander. Currently, A sits in a stroller at daycare (sad face) – the little chairs don’t contain him, so it’s the only way to strap him in and get him at the little table. He’s fed in the stroller as well. The new chair will make a huge difference – it will have an adjustable footrest and safety straps and he’ll be better able to sit and do stuff. The stander is basically a platform he can be strapped into, standing, with a tray. Just another position he can work in, to get him off the floor. We might also see about getting one of the lesser-borrowed walkers from therapy to leave at the daycare.

So far, I’ve been SO impressed with how the all different services communicate with each other and just how much support is readily available. It makes a huge difference! I love that there are so many capable, smart, friendly people involved in A’s care, genuinely enthused to help him progress. What a relief.

Physio/med update

Part of the reason for this blog is also to keep tabs on changes/progress for ourselves, so we can look back and say “oh yeah, that was happening then!” As a result, I’ll be including some kinda boring factual updates vs. musings. Here’s one:

We’ll revise our focus for the coming month to… WALKIN’! On Tuesday we borrowed a very cool walker called the “Kidwalk” and so will be practicing with it while we have it. A has backwards down pat, so we’re working on taking steps to move forward. He does a cute fluttery-feet thing now but think he’ll get the hang of it soon. The advantage of this walker, compared to others, is that there isn’t anything in front of him so he can walk right up to a table, etc. and be able to reach stuff easily. It also has a bit of bounce (A loves to jump) and is quite sensitive so moves/turns easily. Pics to come. Oh, and for added coolness, the back wheels light up with pretty colours!

Re: our neurology appointment, which was also on Tuesday, A’s med situation will stay the same as his weight hasn’t changed and he’s at the max dose of clonazepam for his size. Adding valproic acid was recommended, to treat the new drop seizures, but we decided to wait on that as the drops don’t harm him and aren’t happening that often. Adding another medication has its own set of cons so it’s always weighing one against the other – treatment vs. symptom. It’s hard to read a list of possible side effects and come out the other end saying “sure I’ll give that to my kid.” We’ll at least wait to see if things settle into any kind of pattern as right now the seizures are relatively new and inconsistent.

A also had an eye test, just for the heck of it, and all is well there. The Dr. was over 2hrs behind schedule so our day in the big city ended up being…. looong and waiting-roomy. Twelve hours later, we were home.

Seizure update

I email A’s neurology nurse updates semi-frequently, and thought pasting some of those notes here might be useful.


An update on seizures – we’re a bit confused! He generally seems to be doing much better off the Keppra (he’ll be completely off of it on Monday) – some progress developmentally as well as seemingly less/shorter myoclonic seizures. He used to have 2-4/day, each lasting 30s-1min but lately he has maybe 1 or 2 (sometimes none!) and they are often only a couple jerks. Sometimes the usual 30s-1min ones but those are definitely fewer.

However, as I said before, the drop seizures are new. We’ve seen several more since last updating you – they are only a 2-5sec in length, roughly, and he is aware/happy afterwards. Didn’t see any for the last few weeks, but this week I’ve noticed one every other day or so.

We’re expecting the clonazepam dosage to be increased on our next visit (he’s had a growth spurt!) and are hopeful this could be enough of an improvement, but please advise. It’s seems like there are so many variables, it’s hard to tell what’s what, and if the changes are Keppra related or something else – teething, growing older, weaning adjustment, the progression of his epilepsy? etc!