"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, January 28, 2013

Pure Joy

Happy New Year! Things have been so busy, this is the first post of 2013…I keep waiting for things to “settle down”. I think I am starting to realize that they might not ever settle down, so I had better buckle up and get ready.
At the beginning of the month we met again with Meghan’s Gastroenterologist. Since she still wasn't gaining what we had hoped, we further increased her calories by adding oils and corn syrup to her solids, and by moving her from a formula supplement to 100% high calorie formula. It seems that Meghan has chosen this to be the first area in which she is exercising her independence, because she is refusing nearly all of her bottles during the day. We are managing to get 1-2 in her at night when she’s sleepy and doesn't fight it as much. The rest of the day we are packing as much food in her as we can, but it still seems like it’s not enough. She only gained 2 ounces in the last 4 weeks. This has unfortunately led the doctors to suggest a feeding tube to help make up the extra calories. We will go back this Thursday to figure out how we can best accomplish that. There are a couple different kinds of tubes she could have, and we need to decide what will be best for her. We are still praying about that decision.
Next week Meg has another MRI of her brain, and entire spine, along with a sedated hearing exam. This MRI will also include pictures of her neck in flexion and extension, which will give us a better idea as to how unstable her cervical spine is, and what we need to do in the time before she can have the fusion surgery, including PT and OT. We got a phone call last week that the neurosurgeon we saw in Philadelphia wants us to once again hold her physical therapy until we get this next MRI. I am glad that they are being so cautious with her, but at the same time, it is hard when one of the only things we can actively “do” to help her develop, is taken away. This last week has been a little rough on us as parents. I am not sure why I expected things might get easier, but as we encounter each next step it seems some things get harder. Most of the time I can hold it together ok- but we all have our moments. One of them came after that phone call. I was standing at the kitchen sink, with soapy hands and a soaked face. It was in that moment that I thought of the words of James, “Consider it pure joy, my brothers, whenever you face trials of many kinds” (v.2)….Pure joy? I know that there are many, many circumstances that are more difficult than ours, but still- in this moment, as I fight for my child, this is a trial. And I was having a little trouble with finding the joy. I wrestled with that all afternoon. That evening I attended our weekly women’s Bible study (which just so happens to be on the book of James, by Beth Moore). The theme of the evening was how joy and anguish can coexist. The example that Beth used? A mother who’s unborn child was diagnosed with a terminal condition via ultrasound, and her decision to carry her baby to term. It is the story that inspired the song by Selah, I Will Carry You. It was exactly what I needed to hear. If there is anyone out there that doesn’t believe that God cares, is listening, and has his hand on your life, I beg you to consider otherwise. So many times on this journey I have been reminded of that truth. I am learning exactly what it means to have the two emotions coexist, and Meghan is teaching me. 
                The next day? Well, I will have to let you see for yourself…(don't mind the leftover lunch..)

consider it pure joy, my brothers, when you face trials of many kinds, because you know that the testing of your faith develops perseverance”v.2-3

 Joy comes from watching this little girl make the smallest gesture, it comes from friends and family who are always there for us, and in knowing that God will show up in any trial, perfecting our faith if we will persevere.....and persevere we will.

Meghan's MRI is February 7th. Would you consider keeping her in your prayers that day? She will be under general anesthesia for a few hours while they complete all her testing. Thank You!

Working on her sitting skills...

with some help to keep her knees straight, she got to put weight on those legs for the first time!

Taking time out for some fun:)