Saturday, April 26, 2008

So Sad

Noah's CI battery died today while we were out of the house. Normally we have a back-up with us, but I forgot this time. He's such a different child without his CI - it makes me sad.
He didn't talk.
Didn't sign.
Didn't smile.
Didn't interact.
We tried to interact with him. He knows a lot of signs now if you do them close to his face so he can see.
He just moped.
When we got home we got him a fresh battery and he went back to singing and smiling and non-stop talking/signing. It's days like today that make me realize the CI was the right choice.

What do people do with themselves?

Free time? What's that?

I haven't had any free time since May 2005 when they stuck my in a hospital bed, hooked me up to the mag, and told me to lay on my left side and not move. Ok, I guess technically that was free time. But I wasn't allowed TV, the phone, visitors, or sitting up, and the triple vision from the mag didn't help if I tried to read a book so it wasn't exactly relaxing.

Recently, (think: yesterday) we received notice that Noah's Medicaid has been reinstated. Wahoo!! We got in through a waiver program for disabled people. In addition to Medicaid we've also qualified for at least 10 hours a week of attendant care for Noah and 720 hours of respite a year to be used however we like. I really can't remember what one does with free time. Grocery shopping? Cutting the lawn? I used to have free time, I know I did. It's just been too long...

Any ideas?

Thursday, April 24, 2008

What's the point?

Our OT that we've had since NICU discharge is out on maternity leave (she was due Monday, but no baby yet!). Today we had our first of 3 appointments with our new OT. Only 3? Yup - Noah transitions out of EI next month. I question whether Noah will actually get any benefit of his 3 OT appointments. I mean, he likes the new OT but she doesn't know him.
Today she wanted to work on "proprioceptive" activities. All well and good, until she wants me to squish him with pillows. Ummmm... yeah. Do you want to see what he had for lunch today? And then when he gagged because the piece of playdough he was rolling picked up a cat hair (thus changing the texture) she wondered aloud how it was possible that a kid could be both sensory seeking and sensory aversive. I don't know. He just is. Beverly understood.
Why am I doing this again?!Maybe I should be like Kathie Snow and just cancel all the therapy. Or maybe my therapists shouldn't get pregnant so as to take maternity leave right before my son transitions (Are you listening, Beverly?). That's the ideal solution, really. Oh, and they shouldn't move to Austria, either (I'm talking to you, Jamie Sue!). Seriously - you'd think Noah would be more of a priority in their lives.

Monday, April 21, 2008

I know it must be almost May because...

I've started making nasty comments about women and their cute little take home babies.*

I keep pulling out all the NICU pictures and:

  1. falling in love all over again
  2. marveling that the OG tube was so close to the size of his fingers and the leads covered almost his whole chest
  3. crying

I alternate between telling myself that it wasn't that bad/was worth it and wondering what I did to deserve the hell that we've been through.

Has it really been almost three years?

* To all of my friends who have recently had full term babies or are planning on it in the next month I promise to be happy for you starting sometime in June.

Friday, April 11, 2008

Pretty in Pink

If you take you son with GERD with you to babysit your friend's two daughters and it's his first night with a new form of one of his reflux medications, neglecting to bring a second pair of PJs is a bad idea.

But if you do forget to bring a second pair of PJs make sure you get pictures of him wearing the pink rocking horse PJs that you had to borrow from your friend. It'll be even funnier later than it is now.

P.S. Here's a more manly image to even things out.

Wednesday, April 9, 2008

Spring is here and we've been busy. Visits from 2 grandmas, a grandpa and an uncle and spending time with his favorite great-grandma has kept Noah quite occupied. Here are some other recent Noah activities...

1. Stealing Daddy's socks: No laundry is safe if Noah is around.


2. Checking out his shadow: I think the groundhog was right!

3. Composing: It's easier to push more than one key if you use your feet.

video


4. Visiting our favorite emu.
5. Licking statues: He won't put food in his mouth, but has no problem with a statue that has been touched by hundreds of people. Maybe I should put food on the statues - that would keep him from licking them!
No wonder I've been too busy to blog!

Friday, April 4, 2008

We're not dead...

Just really busy! Noah's grandparents and uncle came to visit from NY, and now Noah's other grandma is here visiting from MA. After Tuesday life should start to go back to normal...