Coping

Thought I would share some pictures of Mary Graham in her new "outfit." She has adjusted pretty well, not too many smiles yet, but I'm hoping they will come as she adjusts. The look on her face in the pictures is about how she looks most of the time, like she's saying, "What did you do to me?" She seems to be uncomfortable and in pain at times. She can't be in a sitting position, so lying down or straight up and down seems to be the best position for her.

She is sleeping well, which is a blessing, but her eating is not too great right now, she has spit up lots-so just trying to figure all that out. It's kind of like having a newborn again, we may be homebound for a while-so come visit :) Just taking things one day at a time.

Thank you for the continued prayers.....



Trying the exersaucer

The boppy seems to be her favorite

With a shirt on, she looks like a little linebacker

Here's where we are....

Thank you, thank you for the prayers today....I have never experienced the work of Christ so evidently through His people as I have this week. You have been a blessing and I have felt the peace of God all around. The emails, the cards, the calls, the verses, the offers to help us....we are so grateful and I have no words to express how overwhelmed and humbled I am that you are choosing to pray for us and Mary Graham.

Her cast procedure went smoothly and we are now home. We are so thankful God protected her. She is pretty uncomfortable and it will take some time to get used to it, as it is rather heavy and bulky. But we continue to pray that her sweet spirit will remain and God will calm her as she (and us) adjusts to this new change.

The orthopedist came and talked to us after the procedure. He told us that her back is still very stiff, even under the anesthiesia, and he is doubtful that the cast is going to correct her scoliosis....so this was pretty discouraging to hear. It is still going to be very hard to fix as she grows. So, he wants her to remain in the cast for a month and then we will reevaluate her response to the cast and make a determination as to whether additional casting would be beneficial. If not, the other options may include a couple of different surgical procedures - - a growth rod or fusion of the (back) bones, both of which would have some complications.
However, he did a special "dye" test on her hips and he said they appeared better than they had in the MRI taken a few months ago. So, he wants to do surgery in a few months that will involve adjusting her hip ligaments and bones to hopefully create a type of hip socket.  This type of surgery would result in MG being in a cast from her chest down and both legs (for a few months).

Kind of a lot to absorb in one day!

So, here is where we are......tired, relieved, thankful and a little disheartened about the future. Please continue to pray that the scoliosis will be corrected in her cast, that we adjust to it quickly, and for clarity for the upcoming decisions about her treatment.

The verse I have held to from the beginning of all this...
"Call to me and I will answer you, and show you great and unsearchable things you do not know." Jeremiah 33.3

Pray that we look to Him for the answers and our faith holds strong during the storms. He is mighty and can calm the storms and we ask you to continue to pray for her healing. We rest in our God who knows what the future holds for MG even though we don't. Our hope remains in Christ and we continue to praise Him, even when it's tough, and are so thankful for Mary Graham's life.

Details and Beauty

"He is before all things, and in Him all things hold together." Colossians 1:17

We met with the orthopedist again this week to discuss the casting procedure. He gave us more details and showed us a picture of an 18 month old with a body cast (not fun to see, but we know this is the next best step). I am confident that this is where we need to be with Mary Graham. I had reached out to another doctor in Boston, sent him all of her xrays and he wrote me an email (and he didn't have to do any of this) saying he thought we were "on the right path" for her right now. God gave me peace through these words because I have so often prayed that our path would be clear.

The cast will go up to her chin, around her body and possible around one leg. She will wear it for 6 weeks and then have xrays done to see if it has helped correct her scoliosis, which is about at a 48 degree curve. Then they will probably leave it on for another 6 weeks, possibly take it off after that and maybe put another on if it's helping or talk about bracing. So a lot of "what ifs" "possiblys" and "maybes." We asked "what if it doesn't help the curve?" and he said surgery to fuse some bones may be the only option. So, we ask that you please pray for the cast to help in correcting her curve despite the difficulty with her back being rigid and tight. We know God can move in mighty ways.

The verse above is so comforting these days when I don't seem to have it all together-at all. He does and is holding it all together. The doctor spoke of Mary Graham's condition being rare, but I know it is not "rare" to God, he knows her fully well. Often I feel consummed......just wanting my mind to rest from thinking about my circumstances with MG. These are the circumstances that God wants us in and it only keeps me running back to Him. Lately I am so struck by many suffering around me, but able to see God's hand weaving a beautiful tapestry. To see life through the lens of Christ is to see this ugly world made beautiful. And I am beginning to see how beautiful she is, more than just her sweet smile and big blue eyes, and how I wouldn't change the way he made her for anything. God is using this tiny baby to change lives and point them, especially me, to Jesus....and that is true beauty.

We are so grateful for your prayers. Please continue to pray for healing for Mary Graham and for God to be glorified through her life and ours.