"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

Wednesday, October 24, 2012

Running Inspired

Whew! What a busy couple of weeks it’s been. We’ve learned a lot about Miss Meghan here lately, so here goes…
Meghan had a follow up with her ophthalmologist, who said she has a 6th nerve palsy which is causing her strabismus. As this can sometimes be a sign of increased pressure in her brain we are watching her closely and following up with her neurosurgeon and the ophthalmologist again here in a couple weeks. We also met with her neurologist. Since we have been concerned for some time that Meghan has not been gaining weight appropriately- even despite a high calorie formula, solids, and breastmilk- he took a closer look at her MRI. Her pituitary gland looked abnormal to him, and coupled with some other structural abnormalities in her brain he is concerned that she may have septo-optic dysplasia- a disorder that has a spectrum of effects, but in Meghan’s case we may not know the full spectrum until she is older. This new information prompted a referral to a pediatric endocrinologist. We met with him last week, and had some blood drawn. Yesterday we found out that her growth hormone level was indeed low, and today we headed back to the hospital for more blood to be drawn. This next test will tell us whether or not we will start her on growth hormone replacement. We have also been able to discuss her CT results with a few different doctors, and we are told that Meghan has something called Klippel-Feil Syndrome. It describes some of what developed abnormally in her cervical spine. You can read more about that here:  http://www.ninds.nih.gov/disorders/klippel_feil/klippel_feil.htm . We were able to schedule our appointment with the neurosurgeon at Shriners in early December, and I am very hopeful that he will be able to better understand her specific anatomy, and come up with a plan for monitoring her condition.
This past weekend, I ran the Columbus Half Marathon in Meghan’s honor, with a team of ladies that love, support, and pray for our sweet girl regularly. This year, the marathon partnered with Nationwide Childrens Hospital. Each mile featured a “patient champion”, and it just so happened that mile 7 was a little guy with hydrocephalus like Meghan. You can read more about the patient champions here:  http://www.nationwidechildrens.org/marathon-miracle-mile-patients . Their presence along the course made it one of the most inspiring things I have ever done. I have no idea what Meghan’s future holds. I do not know what her mobility will be like as she grows. We know now that since she has Klippel-Feil Syndrome it is very likely she will have to have a fusion of her cervical spine (neck) in order to protect her spinal cord, which will limit her ability to turn her head. I ran this year for her- for everything she has endured in her 7 months, for the joy she brings me daily, and for whatever her future will hold. I paced myself differently this race- maneuvering to high five as many people as possible, talk to other participants, and at mile 7 you can bet I stopped running altogether to give Toby and his family a hug. It was certainly not my best time- but I am totally ok with that.  Meghan has taught me to pace life differently these days. I run with endurance and strength on loan from God which sustains me through the physical and mental demands of having a child with special needs, but also with JOY, and lightness and a peace that cannot be explained. I am running inspired, because I race for Meghan Grace.

Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us. Hebrews 12:1


  1. She is beautiful just like her grammy. You're the best Jane. Congrats on the race and on this precious little girl.

  2. Love your post! :) Just found your blog. Love your verses at the top!! our kids are pretty special AND I am pretty sure I saw you at the race - I remember your shirts! :)
    I wore the green shirts from Toby's mile.
    So glad to meet you!