Friday, November 30, 2012

Joyeaux Noel!

Thanksgiving Break was good for Collin. About halfway in, he started taking weight on one leg and by Monday, he was standing on both legs again for short periods. As I've talked about before, I don't get a lot of straightforward communication from Collin, but I'm taking this as his way of telling me: Seriously, I need some down time.

And why not?! Other kids get all kinds of breaks throughout the year to not think about work and sleep in and get their sillies out and just be kids.

So, we're going to run with it and make this Christmas season a true holiday (in the break/vacation sense of the word) by doing it up European style. We will be taking off the entire month of December from therapies and all unnecessary appointments. No leaving the house unless it's to do something fun.

Not that Collin is not going to be laying around the whole time. We still have our at-home program (which will probably get a little lax over the next few weeks, too) and I have some plans for working on his oral feeding skills, among other things. But this move will free up hours of time and loads of energy for fun and rest and exploration.

It's also going to be really good for me. I was looking through my camera roll on my phone this morning and realized that well over half of my pictures are of therapy sessions. We haven't had a true break in a long time and I'm pretty burned out. My day-to-day rest strategies aren't cutting it anymore and I'm getting worn down, so it's time for more drastic measures.

I can't say that I don't have my doubts and nagging guilt about it all. Nothing is that simple, especially when you have such a complicated kid. I always question myself when a decision involves skipping something beneficial for Collin (even if I know that in the big picture, skipping it will be beneficial). I wonder if it's me being selfish and imposing my wish for a break on him. I wonder if I'm misinterpreting and something more serious is going on. I wonder if people will think I'm crazy.

But then I take a deep breath, I remember that I have the full support of Kyle and all of Collin's therapists, and I listen to that small but persistent mama voice telling me to put down that orthotic and take Collin to the zoo.

Tuesday, November 20, 2012

Thanksgiving Break

It's been a bit of a rough week. Nothing big, just enough small things to make the days difficult. One of the strangest is that, for no discernible reason, Collin stopped bearing weight on his legs last week.  He won't stand at all, no matter how much I help him, particularly when it comes to the potty. Aside from the fact that this makes my days much harder physically (I need all the help from him I can get), there's the concern that comes along with any change like this. What in the world is going on? He doesn't act like he's in pain, and he is still super active in terms of kicking. Could it be a plain old 3 1/2 year old thing? Just a phase of some kind? A physical issue? A neurological issue?

On top of that stress, Collin and I were just getting weary from too many therapies and too much running. So, I'm taking my own advice (at Kyle's urging) and taking a break. So far, we've been watching videos, reading books, playing piano, and cuddling a lot. It's a Thanksgiving break not just because the holiday falls this week, but also because I'm trying to be intentional about spending time giving thanks for Collin - not only his developments, but just who he is. I have such a tendency to dwell on and worry over the things that aren't 'right' rather than enjoying the abundant good. Here are some things I thought of today:

- Collin smiles and laughs every day. We didn't know if he would ever smile at all.

- Collin is a wonderful listener.

- Collin is somewhere between 50 and 75% potty trained. (100% when it comes to pooping - HOORAY!)

- Collin is much stronger than we ever expected he would be and his tone is so improved that the doctors are now only calling it 'slightly low.'

- Collin is fully adapted to his bipap, which allows him to sleep safely and with good oxygen levels through the night with only a couple of brief awakenings.

- Collin has had seizure control with NO MEDS for 2 years and 5 months.

- Collin took 3 steps all by himself in his TAOS walker and we have no reason to believe he won't do it again.

- At our last appointment with Dr. Awesome, he explained to another doctor that "Collin has come a LONG. WAY."

- Collin is super handsome.

I'll spare you the full list. We all have other things to do today.

Thursday, November 15, 2012

Yay Fall

Fall is our favorite season around here and we've been so busy enjoying it this year that I haven't been able to update as often as I'd like. Here's a bit of what we've been up to:

Striking a pose.

A kind lady gave Collin a pumpkin at
the farmer's market.

Collin was a Green Bay Packers player for
the awesome Halloween party we went to.

He was a skeleton for all of his therapies
on Halloween, but I forgot his sunglasses
for the car ride, so he had to borrow mine.
(I also forgot to put on his skeleton hat
for the picture. Oh well.)

In the cool stick maze at Bernheim Forest.

Picking pumpkins.