"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, July 14, 2012

A bit of a stretch.

So we’re halfway through July- the month of follow ups with nearly every specialist Meghan has. Joe and I both agreed we’ll be glad when this month is over. Appointments are not always easy on Meghan, and multiple appointments in one day are challenging. We had 5 appointments in 3 days this week, and we are working on recovery! I’m a bit of a believer in babies liking their schedules and the familiarity of home. Meghan seems to agree, although she has been a major little trooper through all of this.
The month started off with a visit to her regular pediatrician for her 4 month appointment. She’s up to 11 lbs 3oz, which despite the adorable little rolls on her thighs is not quite up to where they want her. We are trialing some different nursing techniques to increase weight gain for a couple weeks to see if that makes a difference.  I have heard that many VACTERL kids remain on the smaller side, and she is still gaining weight and burps like a college pro so I am not too worriedJ
At our visit to her ophthalmologist, he diagnosed her with pseudoesotropia- a fancy name for a condition in which her eyes themselves are aligned correctly, but they appear to cross due to her asymmetric face. Her eyes are a little weak, but he said that it’s because sight-wise she’s still developmentally like a 2 month old.  He also said that because of the severity of her hydrocephalus, her smile is a miracle, and that he got chills when she smiled at him. He mentioned that he took those things for granted with his kids, and that he knows how important that is for Meghan. If he only knew how much my own heart is filled with joy every time she smiles at me…
Meghan was also seen by her geneticist. All of her initial genetic testing came back completely normal, but the doctor is convinced it’s a genetic issue because of everything that is affected. We were offered complete Exome mapping. This is where they take Joe’s blood, my blood, and Meghan’s and compare all of our genetic material to look for things that might not have been translated correctly when those first cells were formed. We are still in discussion mode about having it done. Not only could it potentially identify what’s wrong, there is no guarantee that it would, and it might also identify a gene that Joe or I have for a disease that could- or could not- develop in the future. There are definitely some pro’s and con’s to mull over.
Lastly we saw her neurologist. He was very pleased with her cognitively, but noticed the tremor that she has in her right hand. Apparently that is an unusual finding “for hydrocephalus” and he wants to expedite her MRI and schedule it this month instead of next month. She is delayed in her gross motor skills, but he said that between her head size and the scoliosis in her neck and upper back that it is not surprising. This makes PT and OT that much more important! We have some great therapists that work with Meghan, and we know they will help her reach her full potential. The MRI will be of her brain and entire spine. Although it will have to be done under sedation (not something I’m looking forward to), I am hopeful that it will show us how her brain is growing, and give us a clearer picture of what is wrong with her spine. We should find out next week when that will be.
The last couple of weeks, in addition to becoming a super-smiley, giggly girl, she has started to actually reach for toys. It’s an action mostly from her elbow, and not the smooth motions that typical babies have, but she is DOING it. This little girl, with her thin rim of brain tissue, and her musculoskeletal limitations is knocking my socks off. I cannot begin to express what it feels like to be her mom in these moments. I am flat on my face grateful to God for answered prayer. After weeks of PT/OT and stretching at home, she has begun to relax the muscles of her upper body enough to start to learn. It is definitely a stretch for her, and you can see the concentration it takes. Watching her start to accomplish these things makes the way in which I have been required to stretch my own self physically and emotionally as I learn how to be her mom seem insignificant. I don’t know what’s ahead for her, and that is so totally ok, because I am really grateful for what God has allowed her to do today.

"May the God of hope fill you with all JOY and peace in believing, so that by the power of the Holy Spirit you may abound in HOPE." Romans 15:13

Working my core! And my neck! And totally rocking my hairdo!

I can DO it!

This is what 3 appointments in one day looks like...
And this, is pure JOY.


  1. LOL I love your burping comment! That is so great that she is growing!! What a strong, amazing little girl!!!

  2. She is BEAUTIFUL, Sarah. Thank you for the updates. I am continually praying for you and your family.

  3. So cute!! She's rockin' that Bumbo!! Tell her to come here and kick Meagan's booty so she can get in her Bumbo too! haha! I'm sure you'll figure out what to do re: genetic testing. Meggy's came back normal too, and our genetisist at the hospital just seemed to say "ok" and dismissed it. Good luck and so glad she's doing so well! :) :)