"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

Saturday, June 8, 2013


So many people were asking for an update on Meghan, so here it is! May and this first part of June have been completely overtaken by appointments. So many in fact, that Addie even started muttering, "Cleveland Clinic, again?!". It's not easy being Meghan's big sister sometimes, but Addie is hands down Meghan's favorite person. Having just turned 4, she is starting to vocalize a little bit more about her experiences as Meghan's big sister, and is starting to realize that Meghan's experiences are different from her own (she was pretty convinced for a while that she had a shunt, and went to therapy when she was a baby!). However, she has been quite a little trooper, helping Meghan through some tough times these past couple weeks. 

First the good stuff! Meghan has done a great job of healing from her tethered cord surgery, and is back in therapy. She's been getting stronger and stronger, and has learned how to bring her head to a midline position when you tell her to "fix it"! This past week we had our first appointment of many at the "seating clinic". Over the next 6 weeks, Meghan will be learning to use a power wheelchair. If she does well enough, we will be ordering one of her own! It's a process, and we look forward to updating everyone on that. It's pretty exciting to think about her gaining some mobility in a way that will work for her. Also, this past month she became the proud owner of a new hearing aid (complete with purple and white polka dots), and we are learning that while it helps her, she is very aware that it is there- meaning she likes to pull it out and throw it. We are evaluating how we can best help her get used to it:) Meanwhile, she has been learning signs like crazy, and can proudly blow you a kiss!

With all that's going on, we've been a little overwhelmed lately. Appointments have been almost daily, and balancing phone calls to insurance, financial services, doctors, medical equipment vendors, and case managers could probably land someone a part time job (anyone interested??). On top of that, Meghan has had a bit of a rough go- getting a stomach flu and then suffering through some complications with her feeding tube. Quite overnight, the tube started to bleed, drain, and cause her some pretty bad irritation on her skin. We have been back and forth to the hospital and the surgeon, who has cauterized some tissue and put her on some new medications.The feeding tube has been such a good thing- she was up to 17lbs before she got sick, and while she was ill, it kept her out of the hospital since we were able to give her fluids in the tube. We are really hoping to get this under control quickly! It has put her through a lot this week- lab draws, cautery, and a lot of poking and prodding. I cannot describe what it feels like to watch your child in pain, terrified, and be completely helpless apart from wiping away alligator tears, and snuggling her close until the last heaves of sobbing have left her sweet little frame when its over. These are the moments you simply endure, and cling desperately to the knowledge that the Lord is in control of her life, and ours. These are the valleys. Some are harder to walk through than others, but when you are in the midst of the walk, they are all hard. But, they make getting to the other side that much sweeter, and if you pause long enough along the way, you can see there are little bouquets of God's mercy and grace along the way. A sweet Meghan smile. A familiar face in the hospital. A sister who gently, compassionately rubs a tiny little arm. A friend who is just there without being asked....and a day like today, where the peace is greater than the pain, and we are all together as a family.

Trying to stay busy at the docs..

"I have a diagnosis. You have Meghantosis. "

Getting stronger in the bumbo!

Finally feeling better.

Enjoying her first campfire!


My new accessory:)

The Lord is my shepherd, I lack nothing.
     He makes me lie down in green pastures,
he leads me beside quiet waters,
     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.
Psalm 23: 1-4

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