"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

Thursday, June 21, 2012

Entertaining Angels

June is almost gone, and here I am just getting around to updating things. For good reason I suppose- we've been busy! Meghan has been to weekly PT/OT appointments to help work on her milestones. Every week the therapists point out something different she is doing, and we are so very encouraged! She's bringing toys to her mouth, opening her hands more, and her head control is improving. She still can't lift up her head when she is on her belly, but we keep working on it. Right now she is very careful about moving her neck. Our therapists think that in addition to it being difficult because of her scoliosis and torticollis, that she is guarding because of fear. This week we started something called kinesiotape, which puts slight tension on the skin and muscle to help her bring her head to midline. It is also supposed to help her become aware of the sensation in that part of her neck, and it looks rather like a bandaid. I certainly noticed a difference over the last 2 days in how she will  hold her head a little straighter! Interesting stuff...

We've also been back and forth to the neurosurgeon since our last post. After we turned the shunt down again (increased the amount of fluid coming out), Meghan's eyes got much better- she was able to look around after just 24 hours. However her fontanelles, head circumference, and sutures didn't change. She had a really fussy week last week, and that coupled with the other things that didn't change with the faster setting we were a little concerned. Last Thursday I took her back to the hospital to have her looked at again. This happened to be the first trip to main campus with just Meghan and I. Usually I have had company. When you travel an hour both ways, and have to navigate the city that is the main campus of Cleveland Clinic with an infant in tow, it's nice to have an extra set of hands! At the appointment, our neurosurgeon thought that perhaps her brain had begun to fill in around the catheter and that where the tip was surrounded by fluid before, it may have become partially blocked by brain tissue causing an intermittent occlusion of the catheter, and may be an explanation for Meghan's symptoms. This would mean surgery to re-position the catheter. So she sent us down to pediatric radiology for a brain Ultrasound. At this point, I'm terrified, but I have no choice other than to hold it together and be Meghan's mom. We were directed to wait in the long hallway of a basement that houses the radiology department, with some chairs that serve as the "waiting area". Meghan was starting to get fussy, so I swaddled her up and started our "walk" (if your a parent, you know what I'm talking about!) The apprehension began to set in, and I started to feel very alone in that space. I made a quick phone call to Joe, and started praying for my little girl. There was an older woman waiting at the other end of the hall, and before I knew it, this perfect stranger had her arms around me and was hugging me asking what my baby's name was, and could she pray for her. I was so very grateful for her comfort! Seconds later she was called back for her test, and I waited our turn while Meghan snoozed. The Ultrasound went well, only a little protesting, and we went back up to see the surgeon.

Dr. R came out, and said her Ultrasound looked great. The pressures in her head were normal, her brain is beginning to fill in, and her corpus callosum (the part of the brain that connects the left and right hemispheres) which was significantly compressed at birth is no longer "smushed". My jaw was nearly on the floor. Not only did we not have to go for surgery, we got amazing news about her brain to boot! It was kind of a hallelujah moment!

As I was driving home I had a while to reflect on what had just happened. Since I was by myself with the baby, I had no choice than to lean on the Lord for strength when faced with fear. Some people might call that sweet woman's presence a coincidence, but I choose to believe otherwise. I felt that in that moment, it was the very present love of Jesus that was shown in exactly what I needed- a hug, and a prayer. I learned that I may have to be stronger than I want to be at times, but that I don't have to rely on my own strength. He is always there.

 "And do not forget kindness to strangers, for by this, some who, while they were unaware, were worthy to receive Angels" Hebrews 13:2

So very grateful for these moments...
New this week: SHE LAUGHS!!!
Kinesiotape in Action...and for those of you that don't know what a shunt looks like, here it is. There is also a stunning hairdo in this picture...