Saturday, February 26, 2011

OMG! We're not alone!

I met another family with a little boy with a trach today.

Another *PAGAN* family, with a little boy with a trach.

How cool is that?

Convocation updates coming eventually, when I've had a bit of sleep and am not hurting quite so much - I taught three workshops today, and stood for most of two of them, and my hips are protesting greatly. In the last few days, I've seen fabulous artwork, cute t-shirts, amazing gemstones and crystals, and piles of books. I've gotten hugs froom many old friends, and I attended an interesting workshop that was, for me, rather surreal. But for now, I think a soak in the bath tub is in order, and a substantial snack before I head for an early bedtime.

Thank goodness for an early nurse tonight.

Thursday, February 24, 2011

a sense of belonging

Sometimes I'm not sure where I belong.

I'm too attachment parenting (AP) oriented for most mainstream moms groups.

I work full time, which apparently means my kid doesn't need playgroups.

I'm usually too mainstream for most Pagan parenting groups (and the one group I know of locally requires moms to be stay-at-home-moms to join).

Apparently I'm not mainstream enough for the local AP families group (poly & Pagan) *and* too mainstream (I work full time and I give my kid antibiotics when he's sick).

My child's needs are too specific for most generic "special needs" parenting groups, which I frequently find are...overrun...with parents who have kids with Autism or other spectrum disorders. Don't take this the wrong way, but if your "special needs" group only ever talks about ASD, it's an ASD group, and ought to be advertised as such.

I've got a few special needs parenting groups that I'm a part of, but every once in a while the less mainstream aspects of our life get me in trouble (AP in particular).

And sometime this year, we will lose most of the things that have made Acorn special needs and medically fragile - both the trach and g-tube are going, unless things go haywire. While that will leave him with some complex medical history, and a few minor special needs....he'll no longer be classified as medically fragile.
How strange that we're not really going to fit in with that crowd either...

Wednesday, February 23, 2011

Why I love our PMR doc

A week and a half ago, I took Acorn to his PMR (phsyical medicine and rehab) doctor for a follow-up. We've seen this gentleman twice before, and he's been great with Acorn, even with all the medical anxiety issues. He's patient, engaging, and he pays attention to Acorn's cues.

At our last appointment, reading through Acorn's MRI report half out loud, he stopped mid sentence and said, "unremarkable? Acorn, they called you unremarkable! How rude - they don't even know you!"

Acorn would not shake hands today, but that was ok. 

He asked how things were going with the AFO, and I explained that while he walks much better with it on....he's recently gotten considerably faster than before with it off. Before the AFO he tripped every time he started going fast, because his foot turned out. Dr D had been watching Acorn wander around the room, and asked us to take his shoes and AFO off - and then get him to walk around the room.

Dr D stood there, mouth agape. He went back and re-read his notes from 2 previous appointments. He picked Acorn up by the armpits to check his shoulder tone. He again looked confused and re-read his notes again.

Finally he turned to me and said, "whatever you're doing, it's working, because I can't believe this is the same kid that was here last summer. Most kids I see here don't make that kind of progress."

Score one for the home team!

We'd gotten a second x-ray to check for scoliosis - the first said he had a 10 degree curve, which Dr D said was within the measurement error, which was why he wanted another check. He wanted to make sure Acorn wasn't getting any worse, because the low tone issues he's had, particularly the mis-match between right and left, make him at high risk.

He read the new report, and again came to a screeching halt.

This time, the curvature measured only 1.5 degrees.

He said, "I don't know what you did. I was just hoping it was no worse. This though...This is phenomenal"

I told him that we've worked hard on strengthening trunk muscles, we've been seeing a chiropractor weekly, and that I really think walking better now that he has the AFO has been a big help too.

He said that was all good....and to keep doing what we're doing.

Thursday, February 17, 2011

Well, the secret is out, sort of.

I told my boss. He's happy for us, but sees how complicated this makes his whole situation (our group is short staffed right now; I'm doing my job plus trying to keep things rolling for one of the empty jobs that he needs to fill).

I gave up today and put on maternity pants. I'm down to 2 pairs of slacks that are sort of kind of comfortable, and it's just not worth it.

Tonight I'm doing our longest ever solo drive with Acorn - we have to pick my dad up from the airport, and my spouse has other commitments. I wasn't worried about it until I learned that last night's nurse couldn't get him situated with his cap on this morning - she switched to a speaking valve to give him a little bit easier time breathing. Because there's air still moving through his trach with a valve on, he still has to be suctioned pretty regularly, unlike the cap which means virtually no suctioning. We went in to the doctor on Monday, and after looking him over, the guy said, "well, he doesn't really seem sick...but clearly he's not at baseline."  Gee, thanks. I said that when we walked in, so why am I paying you to parrot my statements back to me?

Anyway. Pregnancy dreams have gotten disturbing - that can stop any time. So can the morning sickness, though it seems to be a bit less this week. Last week was horrible again though, so I don't want to pin my hopes on apparent improvement just yet.

And I need to write about our amazing appointment with the physical medicine & rehab doctor, but that's another story for another time...

Sunday, February 13, 2011

there's nothing here to be sad about

Note that while the first trimester is supposed to be the point when you're exhausted, now that we're on to the 2nd, I seem to have finally caught the "OMG pregnant must sleep" bug, so I apologize if this is incoherent...I'm a nap short today with a sick kiddo.


My father is coming to visit this week. He called to discuss arrangements, and to ask if Acorn would be afraid of him, like last time he was here.

Keeping in mind that "last time" was Acorn's birthday, during the summer, and that it was the 4th time Acorn had ever been around him (at birth, the summer he turned 1, my brother's wedding at 18 months, and then last summer)....and that we were at the height of Acorn's anxiety about everything, and that my dad is not the most cuddly or socially skilled person in the world, you can see why he'd be wary of this man showing up and wanting to play with him.

I told dad that it was hard to say - that the anxiety is a lot better, and that I had figured on finding some things they could do that were Acorn's favorite things, which would pre-dispose him to being more open.

My father was upset by this. More to the point, he was upset by "all this crap that Acorn has had to go through" because clearly, that's what makes him afraid of strange people.

Right. Because more typical kids without our medical history are never shy, wary of strangers, or afraid of doctors. Because normal toddlers remember people they haven't seen in 6 months (frankly, it wouldn't surprise me if Acorn does remember him, but has already made a judgement about him and filed it away).

I just wish that people would stop looking at what has been, and look at where we are. Clearly, Acorn does not feel that his life is a tragedy. He's happy, as healthy as any other toddler we know...granted, he has a couple extra pieces of hardware, but it's not like he lets them slow him down. Life is what it is, and focussing on the past doesn't gain us anything at this point - we've done what needed to be done, what seemed to be best at the time, and we've moved on. I just wish everyone else would too.

Tuesday, February 8, 2011

13 week updates

Today marks 13 weeks of this pregnancy. Theoretically that's 1/3 of the way done...but for Acorn, it was just a few days short of half way. I remember getting to 20 weeks with Acorn and thinking, "wow! half way done! That went so fast!"  If only I'd known how quickly the rest of the pregnancy would go....

Anyway. Still cranky. Sinuses are still a problem, and I suppose I ought to go back to the doctor. Still miserably sick, off and on - clearly my body doesn't read the calendar, because morning sickness is a first trimester thing (ha!)...but then, it couldn't read the clock either, and stick with only being sick in the mornings. No, lately it's been after dinner.

Acorn appears to be coming down with something too, so this will be a fun and exciting week, I'm sure. He's been on oxygen the last 2 nights, and we've run albuterol in the evenings, which we haven't done in weeks.


I frequently feel that I've lost myself somewhere. I keep trying to remind  myself that it's temporary - that I need to focus very specifically on meeting my physical needs, because I don't have the energy to meet any other needs if I don't. It is hard, and some days are better than others,


Beyond that, there is drama in so many of my communities right now...I wonder if there's something astrological going on, or what. Again I'm reminded that sometimes, life was easier when I was a hermit with no friends.

Saturday, February 5, 2011

Goddess watching over us

We'd told people that we didn't care if our child was a boy or a girl (and, surprise, our "girl" was really a boy), just that our child was healthy.

Before Acorn was born, when things started to get rocky, I remembered reading that one of my matron Goddesses (who is not known for being the most motherly type) was frequently referred to in mythology as a goddess that people asked to watch over their children, in a "keep them safe or take them to you, so I at least know they're in good hands" kind of way. And without a second thought, I asked Her to bring us through this, with a healthy baby....or to take our baby and spare "her" all the suffering she might face otherwise.

It was a leap of faith that I'm not sure I could pull off today, but a realization reading other comments on a post on a special needs message board may have changed my mind on that front.

It's common for Christian folks to say that they've put the whole situation into God's hands - that He will do whatever he thinks is best. I think us Pagan folk have the benefit of having some ideas on how to manifest the things we need and want...and even as we attempt to do so, sometimes it turns out that we got what we needed, even if it wasn't quite the way we were expecting.

Looking pains me to say this, but looking back I was so mad at Her, after Acorn's birth, for not protecting my tiny little guy from various surgeries and procedures and IVs and needles and on and on. 

And yet here we are 2 1/2 year later, with a happy, healthy toddler (ok, yeah, he's still got a trach, but he's at least as healthy, or more healthy, than the kids of friends on the local natural parenting board, and at least as healthy as the kids at preschool). Most people meet him and think he's "normal" (whatever that means) until they realize he doesn't talk, which I know I couldn't say a year ago - or even 6 months ago.

And isn't that what I asked for? It's been a bit round about, and a bit touch-and-go, and a lot more complicated than we expected. But...we are coming through it all, healthy and whole.

So...maybe it's time to be a little more specific aboout what we want for Leaf, so we don't have to take such a meandering path to get to that point. A healthy full term pregnancy. A VBAC. A baby healthy enough to come home with me when I leave the hospital, without complications or additional follow-ups with specialists. A baby who breastfeeds easily. Milk that comes in quickly and a good milk supply with no fenugreek (I can't stand the smell of that stuff).

And I really wouldn't mind at all if it is a girl. :)

Friday, February 4, 2011

Maybe Preschool isn't going to work out

Preschool is a challenge.

Acorn participates, but only with 1-on-1 attention from a teacher or an aid. When they switch people (like for a break) it's 20-30 minutes to get him back in the groove. There are typically 4-6 adults over the course of the day who are his shadow, and they're not the same people the 2 days he's there, because most of the aids are part time.

About once an hour, he looks up to make sure the nurse is still there, and starts crying. She tells him he's doing wonderfully, playing with his new friends or doing art or whatever. He continues crying for a few minutes, but keeps participating (though how much of that is because there's someone right there hands on is hard to say).

When we show up, he runs for the door. He's gotten better at home about getting his coat before he goes out, but if he could get out their door without a coat he would. He won't eat breakfast for them; lunch and naps have been spotty at best.


Suggestions so far have included to try switching days - one of the aids is there Tues and Weds and if he went those two days, she could be his main shadow person. Which is great, if it gets him more comfortable, but doesn't solve the issue of us having this problem all over again in a few months when we switch to full time.

They think he'd do better if he was there more often. I'm not so sure - we do lots of other things once a week, without it being a huge deal for him. He's always had a different schedule for different days of the week, with different nurses, therapists, doctors appointments, etc.

I don't know what to do. I don't want to leave him there if he's miserable, but I don't want to pull him out before giving him a chance to figure it out and work out how to navigate it, and I'm not sure 3 weeks is enough time to have figured it out.
I'm wondering if this is a transition he's just not ready for. Which is fine, but still leaves me figuring out what we do about child care when we lose our nursing. I really wish there was a simple answer.