Monday, January 30, 2012

Guarding Our Time

I have been thinking a lot recently about scheduling. Lily has four different therapy sessions every week, each of them an hour long: physical therapy (PT), occupational therapy (OT), speech/feeding therapy and developmental services. I have been trying to figure out if there is one or two we could cut out of our schedule, or perhaps change to every other week, but each one serves a unique purpose and is so helpful for Lily. The problem is, when you put them all together in one week and repeat that over and over, I think some of it starts to lose its usefulness.

Last week when we were in the hospital, I was almost elated to be able to cancel all our therapy sessions that were scheduled for the week. No, it was NOT fun being in the hospital, but there was still a kind of vacation-like feel to it because that was the ONLY thing we were doing. Yes, it was terribly boring and absolutely exhausting. But, in a very weird way, it was also refreshing to take a step back from our daily life and just focus on BEING. It made me realize that maybe we are DOING too much.

Because Lily is about to age out of Early Intervention, I don't see much point in trying to change anything there. But when she turns 3 and switches to the public school system, I see a chance to start over. To re-evaluate her therapies and what's important. And I've also come to realize that it's ok if I'm not at every single therapy session. If she needs to get some at daycare, that's ok. It's ok (and good) for her to go to daycare a few mornings per week.

This afternoon I canceled her physical therapy session that was scheduled for tomorrow. I'm just not ready (and I don't think she is, either) to jump back into our full schedule. So, we are going to ease back in as much as possible. And hopefully in the future we can cut back a bit so that we don't have to.

Saturday, January 28, 2012

Check It Out!

Like the new look? I love it! It's still a bit of a work in progress. Thank you SO MUCH to Ashley for designing the header and signature for me :)

And here is a video of Lily signing "Mama" and "Daddy"! She is just starting to "get it"; hopefully we'll see her signing vocabulary explode in the next couple of months.

Friday, January 27, 2012


We have had a rather "exciting" week. On Saturday, Lily had a fever and her nose & cough got suddenly worse. On Sunday she started wheezing, was sleeping more than normal and eating much less than usual. So on Monday morning I took her to the doctor.
Waiting in the doctor's office.
Monday was a long day. First they were just going to send us home with a bunch of prescriptions, but then while in the doctor's office they couldn't get her O2 sats high enough to be comfortable with that. So they sent us out for chest x-rays and told us to come right back, which we did. Her O2 sats were still low and the x-rays showed double pneumonia, which just means pneumonia in both lungs. They decided to send us to Roanoke Children's hospital.
Getting some oxygen while waiting in the ER:

At first they were going to let me drive her up there, and even go home first to grab a few things (like her Sildenafil), but when they called the hospital the pediatrician there was not comfortable with got sent by ambulance. It was Lily's first ambulance ride:

We hoped we would only be there for one night, but it turned into three nights. By the third day Lily was doing well enough to go to the play area.

Finally on Thursday she was discharged. Here she is playing in the windowsill that morning before we left:

Now we're home and taking it easy. We have had lots of support from family and friends, which has been awesome.

Thursday, January 19, 2012

Funny Photos

Here are a few quick pictures from the last few days:
Hangin' out with Daddy
Showin' some leg!
Guess who's learned to open the kitchen cabinets?
And extract all the contents?
"Oh yeah, that'd be me!"
I especially love this last picture of Lily. It's what those in the photography business might call an "environmental portrait". I love how Lily is framed inside the cabinet, but also the mess around her really  shows off her personality right now: "I am into EVERYTHING!"

Friday, January 13, 2012

A Kairos Moment

If you don't know what that means, I think it's best explained on this blog. I'm not going to re-hash it here, I just want to share with you a Kairos moment I had a few days ago.

I was sitting on the couch and Lily wanted to climb up with me. Since she can't get onto the couch by herself yet, I pulled her up onto my lap. As usual, she flipped to her stomach and hung her head off the arm rest. She ended up positioned in such a way that my palm was pressed against her chest, right next to her heart.

I froze, because I could feel her heart pumping in my palm. I could almost hear it. And I paused to listen and feel because I know not to take that beautiful heart for granted. Lily had to fight so hard for that heart to work properly, and it just felt like God was right there reminding me again that it's a miracle she is here. It's a miracle she lived long enough for us to adopt her. It's a miracle she was able to have the repair surgery. It's a miracle that she did so well with that surgery.

She's a miracle.

A Future In Modeling?

With all the talk about the little boy model with Down Syndrome used in a recent Target ad, I can't help thinking that some modeling agencies need to see this picture of Lily:
We did not pose her for this picture, she posed herself! Seriously, that could sell some kids jeans don't you think?! :)

Monday, January 9, 2012

Changes To Come

Hello Bloggy-world! This is just a quicky post to tell you about some of my plans for this blog.

But first, I know you all want an update on Lily :)

She is doing great! A few days ago (on 1-5-12) she started taking a few steps unassisted! The best part is that she thinks it's hilarious and is SOO proud of herself! You can just see it on her face, how proud she is :)

Also on 1-5-12 she started going to daycare a few mornings per week. In fact, she is there this morning and that's really the only reason ya'll are getting this update :).

So, the changes. Well, I'm planning to redesign the blog myself now that I have some Lily-free mornings. I am also going to try to post more (I know, I say that a lot). But really, with Lily in daycare some of the time, I think I might actually be able to follow through on that one. I work best in the mornings, especially when it comes to writing. And now I will have a few mornings to myself!

So here is a virtual toast to the new year and positive changes to come!

Sunday, January 1, 2012

Lily's First Christmas!

As promised, here are the First Christmas photos. This first set was actually on the 22nd, opening a present from Rob's coworkers:
"What's this thing?"
"A bag? Oh, perfect!"
"Oh, a kitty! I get it now"

The next set is from Christmas Eve: she got a trampoline and a few other things...
First time on the trampoline
Trying to teach her how to open presents...
A new walking toy!
It works like this...
And plays music!

And finally on Christmas Day, more presents!
Her favorite "present" was the coffee table.
"Lily's First Christmas"
Mommy had to open most of the presents for her....
"Look at this mess! I didn't make it"
Happy New Year, everyone!