Tuesday, February 23, 2010

In a perfect world....

....children would not die before their parents, particularly not when they're tiny.

One hard thing that comes of being the kind of special needs parent who faces life-threatening medical issues every day is that you meet people along the journey, fighting similar battles to keep their children alive and growing and healthy....and sometimes those children lose the fight.

In November, it was a child here close to home that we shared nurses with - a little boy sent home with a trach and vent at 11 months to die, who lived to be almost 7.

In December, it was one of our trach friends from the trach board - one minute fine, the next minute gone (literally).

In January, a member of our local attachment parenting group went in to the hospital, and her little one died a few days later (a full term birth, but with complications they didn't know about ahead of time).

And today....another of our trach friends A little guy who'd been fighting for a while, and who was, to all appearances, getting better day by day after his most recent round of surgery (which took several months of recovery), and then another illness.

Days like this, I look at Acorn, and all he's been through, and the odds stacked against him.

By gestational age, he had a better than 90% chance at survival, but he also was super small for his age because of pre-eclampsia, and if we counted by weight.....it was closer to 75%. We dodged that bullet, though there were times we came close to losing him.

The risk of major disability in babies born at 27 weeks who survive is about 10-15%, and it appears we've dodged that bullet too, even with a small brain bleed early on, and his numerous low oxygen moments.

The risk of "minor" disability (attention span, coordination issues, vision problmes etc) is on the order of 50% for kids less than 3 1/2 pounds. Given the family history of poor coordination, needing glasses, and ADD, I'm guessing for him it's closer to 99% :)  - but these are all manageable things.

He had no retina problems, no hearing problems (believe me, we've been through nearly a dozen tests). He has caught up on all but a few of the adjusted age milestones for OT and PT - the things that worry me these days are, I'm told, almost all within normal limits for his adjusted age, though his overly pronounced preference for his right hand isn't normal, and kids his age ought to be running and dancing and kicking balls and jumping, and he's just learned to walk.

I'm not sure where a trach falls in this major/minor disability thing. But...days like this I frequently feel guilty about complaining about it at all, because, as far as we can tell....

Acorn will eventually be one of those kids that you'll never knew was a preemie.
  • His breathing issues are resolving as he grows.
  • His pulmonary hypertension is completely controlled with a steadily decreasing amount of meds/weight, and is suspected to be resolving on its own as he grows.
  • His hypospadius will be repaired surgically this year.
  • He's catching up on phsyical things through lots of therapy
  • He's still not talking, but he's making plenty of sounds with his PMV, and with two speech therapists, he'll catch on quick.
  • His teacher, therapists, and nurses all comment on how smart he is, and how he watches carefully first, but then knows exactly how a new toy or activity works - once he gets the idea behind a physical motion he needs to do, he's off and running with it, and showing improvement with the task at the next session.
I'm not gonna say he'll be normal - we're not normal, and I'm sure living with us warps his sense of reality every day :) But, really, by the time he gets to kindergarten, he'll be as typical as any other kid there. And while I thank my Gods and Goddesses every day for that blessing.....I wish everyone else could have the same gift.

Tuesday, February 16, 2010


Seriously, this not wanting to sleep thing is out of control.

I want my sweet sleepy boy back, who we could sit and read a story with and tuck him in and have him fall asleep peacefully.

Instead, evenings have become a war zone, and because we can't get him to sleep, we adults aren't getting any time to wind down or spend together before we have to go crash for the night.

If we take him upstairs and do jammies and a story, he cries...and we're so not into the cry-it-out philosophy, especially since Acorn is non-verbal at this point, and crying is one of the few ways he has of communicating.

Our current working plan is that when it gets to be bed time, we turn down the lights, one of us picks him up, we turn on some soft music....and we wait. I'm not sure what Big Oak really does, other than the daddy version of swaddling, but he usually falls asleep about the same time Acorn does.

When it's my  turn....I pull out all the stops. We snuggle, and we limit the thrashing about because it's painful to me. And then the energy work begins.

I use reiki - or at least, I use it as best as I can, since I've never been super comfortable doing it. I use my own methods of energy work too - when Acorn is in this fighting sleep phase, his energy is orange and ragged and sharp points...and what I want him to be is a deep blue, with gentle waves. So, over and over, I lay that deep blue over top of his orange, and he slowly starts to match. Every so often, he startles himself, and the oranges and yellows break through again, but I just go back to modeling my energy and molding his.

It's not uncommon for it to take me an hour to get him to sleep. It's exhausting.

On the plus side, it's also a good reminder about being mindful and present - doing anything else while getting Acorn to sleep basically means he won't sleep. There's a part of me that is glad we have to take that time out of our  crazy days to be absolutely 100% present in how we interact with him, but I wish this wasn't it.

We've tried other things - talking about deep breaths, and showing him deep slow breathing, just makes him more upset. He doesn't mouth breath much anyway, so most typical meditation techniques are out.

Day shift nurses seem to just wait for him to be too tired not to sleep to get naps in. Night shift usually gets here after Acorn is asleep on weeknights, but on weekends they get to try to get him to sleep, and they're considerably less successful than we are. I know they don't do energy work on him, so we know that's helping some.

Now if I could just find the magic wand that makes bedtime less stressful....

Monday, February 15, 2010

rewarding ourselves

Today I stopped on the way home for a candy bar - a Payday, to be exact, with it's yummy sweet and salty combination.

I was reminded of years ago, the many evenings I walked "home" to my great-grandmother's house after math team practice.

Obligatory side note: yes, I'm a geek. I'm an engineer, for Pete's sake, remember? I was captain of the math team my junior and senior years, and I have an armor-plated letter jacket (covered in medals won at competitions) to prove it. Math team was my main extracurricular activity from 7th grade through graduation.

A fair number of those walks were accompanied by a Payday candy bar, hard-won by being first to answer some crazy complicated math question.

Our coach was Mr T, originally from Japan, and something like a cross between Mr Miyagi (Karate Kid) and Jaime Escalante (Stand and Deliver). One of his favorite training methods was "board races" - 2 or 3 teams of students competing, each team sending a person up to the board to work a problem. And sometimes these came with tangible rewards.

Candy bar questions were frequently difficult, and commonly pitted a smart underclassman against a seasoned upperclassman.  There were soda questions too, and sucker questions got you a Tootsie Pop.

The young man who was captain my first year had a thing for orange Tootsie Pops, and there's usually not many of them in the bag anyway. Truthfully, I had a bit of a crush on him, seeing as how he was teaching me triganometry. And orange Tootsie Pops have been my favorite ever since.

Thing is though, there's no problem in life that you get soda money for solving; no bag of Tootsie Pops in the file drawer to reward a particularly clever answer.

So sometimes, you have to go buy yourself the candy bar when you've done a good job.

Saturday, February 6, 2010

Educating the Home-bound Toddler

When Acorn first came home from the NICU, we realized we had a challenge ahead of us. He'd never seen real food. Never experienced any weather other than "indoors." Never seen another child. Never heard a car or stroked the fur of a cat.

And here we were, about to drag him out into the wide world of experiences....with the limitations that come with needing to take 50 lbs of medical gear everywhere you go, and a complete paranoia about germs.

All things considered, he did pretty well. In the beginning, he was easily overwhelmed, and we did a lot of babywearing to keep him in a nice safe space while we did all that exploring. Besides, it kept people at a distance, all the better to keep the germs away.

Once we got him into early intervention, we weren't really sure what to expect, but we heard that he was getting a teacher. We were told that "normal" kids went in to school one morning a week for their class. And since Acorn wasn't quite "normal" (and our pediatrician was adamant that he not go *to* school this year due to germs), he'd get "the same" stuff at home.

I think in my mind, I assumed this class was like a daycare center's class stuff - that there was some structure, some "readiness" things. But it appears that all it involves is playing with different toys, without much in the way of direction.

To be fair, we have a major personality conflict with Acorn's current teacher, and she's been afraid of Acorn's tubes from the very beginning, which has led to a major disconnect between him and her.

Don't get me wrong; at 20 months, Acorn learns a lot from play. But there's something to be said for exposing kids to various subjects at an early age, and there's play that has educational value, and play that involves banging toys on the window. And given Acorn's lack of speech, the more language we introduce, the better things will be when he actually gets around to talking.

Besides...we have these nurses here all day, trying to figure out what to do with Acorn between therapy sessions and naps. They want suggestionns on what to do with him. They all think (and even the horrible teacher agrees) that he's a pretty smart cookie - which isn't surprising, really, given how geeky we (his parents) are.

Over the last several months, we've been looking at homeschooling ideas for toddlers and preschoolers. I like the idea of tot boxes and lapbooks....but we need something more tolerant of stretched-too-thin parents and a round-robin of nurses.

This fall we tried a pre-packaged daycare curriculum. Each week had a theme, and had various stories, music, nursery rhymes, and coloring pages. It was interesting, but still relied on creating more toys for activities, rather than offering ways to use what we have already.

So....since we're running out of options here, we decided that creating our own plan wasn't such a bad deal.

We came up with a monthly "big picture" theme, and two sub-themes. We feel like a weekly theme is too quick of a change for Acorn, since he has so much other stuff going on as well.

For each sub-theme, we have a featured color, body part, shape, number (1-20), and letter. We also are listing out books, toys, and videos we currently have (or can get from the library). We did purchase some coloring books, and we'll be downloading coloring pages online too. We're also featuring a sensory experience - everything from dry rice to playdoh to pudding to marbles.

On the plus side, working out a matrix like this months in advance means I can do planning when I have time, and have things ready to go as weeks pass by. It also means I can adjust the activities and sensory things to match Acorn's abilities as they change, on the fly.

I'm sure there will be points where I'm completely overwhelmed by doing this, but I don't really see any other options.

Friday, February 5, 2010

A giveaway you'll love

Have I mentioned that we've met (well, met in the online sense of the word) some really fabulous people by virtue of Acorn having a trach?

Tammy over at Praying for Parker is one of them. She's amazingly sweet, and one tough mama who has been through far more things than I hope we'll ever have to do, all in the name of keeping her little cutie, Parker, alive and well. Parker has a trach, just like Acorn, and pulmonary hypertension, just like Acorn - though Parker's is far worse.

Tammy was one of the first trach moms I ever met online. She was super friendly and helpful when we were first getting started, and reading about Parker's journey has taught me so much about dealing with medical stuff, and interacting with the rest of the world - both as the mom of a medically fragile kiddo, and as a "normal" person who is often out in places where I run into other families with special needs kids.

So....all that aside....

Tammy and Parker have reviewed Melissa & Doug's grocery store/lemonade stand, which is really neat. They're giving one away for free over on their blog this week. And while I'd really rather win it myself for Acorn....you ought to go read their blog and enter too.