"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Monday, December 2, 2013

The Eyes Have It

I have this little window of time after the girls go to bed in which to accomplish all the tasks that take 100% of my attention, like for instance, writing- which is why I can't seem to get around to doing it as often as I would like. At any rate, tonight is one of those nights where I actually feel semi caught up on things and can sit down to give you all an update!

Meghan has had a decent month, apart from hitting a little rough patch with her feeding tube. About a week after she was in the hospital, we noticed that the skin around the tube was very red, and the site itself began to drain. With similar circumstances landing her in the ICU this summer, I wasn't taking any chances. Being a weekend, we headed to the ER where after a thorough evaluation we left (yay!) with antibiotics and some really fantastic care from the Pediatric ER staff at Fairview (love you guys!!). After a couple days of antibiotics, the infection was clearly resolving but she began to develop granulation tissue as a reaction to the infection. So, we've been back and forth a little bit with that, but in the last week it is finally settling down- thank goodness! Waiting on healing is an exercise in patience and trust, is it not?!

Meg has been hard at work in therapy this month, and working on her independent mobility. She is finally beginning to attempt to bear weight on her legs. It's for seconds at a time, with major support, but SHE is initiating the movement. You have to start somewhere, right? She tried out a version of crawling that involved keeping her head on the floor. This led to some major rug burn on the forehead, and the discovery that you can't see very well when you have your forehead on the floor so she's back to rolling, with the occasional scoot to change direction. She is ALL OVER the house now, and her new favorite thing is to open and close doors (and by that I mean she closes them, and yells "OPEN CLOSE!" until someone opens it up for her to close again).

The really fun news is that Meghan's ophthalmologist is putting eye surgery on hold for now, in exchange for glasses. We've been patching her daily for well over a year while they waited to see if her eye muscles would get stronger. At the last visit we were expecting to schedule another surgery, and instead left with a prescription for glasses. I almost cried! The greatest part is that she is adjusting to them amazingly well. Given her recent reactions to all things medical, I would have never expected her to keep them on the way she does. She has started to notice more details as well. Some things are fun- like snowflakes! She is also happy to point out every speck on the carpet, and the dust floating in the air.....

Next week Meghan is having tubes put in her ears, and her adenoids removed. She has had fluid behind her ear drum for months, and they want to protect her hearing in her non-deaf ear. We are thankful for a "normal" toddler surgery for once (if that makes sense) but with all Meghan has been through it is becoming more difficult to help her through the trauma of the medical setting. She has absolutely figured out who doctors and nurses are, and has become intensely fearful of interacting with them, even if what they are doing with her is not painful (case in point- exam by her neurologist a couple weeks ago. He basically presents her with toys and talks to her. She cries and yells "ALL DONE!". At this point, I can't blame her.) If you could once again keep our sweet girl in your prayers on Tuesday, we would appreciate it!

We hope you had a wonderful Thanksgiving. Ours was quiet, at home, and and surrounded by family. We have so much to be thankful for, and believe me when I say that we didn't take one second of a day like that for granted.
Get on your feet!

Excessive cuteness.

The girls enjoying the first sled ride of the year!

Finally big enough to play dress up:)

The tree is up! We are ready for CHRISTMAS!!

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God". Philippians 4:6

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