The Rest of the Story...

"The Lord will fight for you, you need only to be still." Exodus 14:14

We flew back Friday night and had safe travel....MG is doing really well, she is only on motrin and slept good last night. Did her first tube feed on our own and it went great. She doesn't wake up very hungry after "eating" all night. It is so great to be home and see the rest of my family, Loftin and Lucy have had a great week too. All her incisions on her back and gtube will take a couple weeks to heal...but I'm so thankful for how well she has done...it is really amazing.

I want to share some of the other things in detail, unexpected blessings and things I want to write down to tell of God's goodness.....it's a little scattered though, sorry about that....

Getting into the Ronald McDonald House the first day we got there was such a blessing....especially because it was just me and my mom. It was safe and convenient for her going back and forth. Also, my mom was such a help and support for me and Lee's mom, such a help to him with Loftin and Lucy. How could we do all these surgeries and trips without friends and family?

Dr. Oscar Mayer (who is awesome and great grandson of Oscar Mayer hotdogs :), our pulmonologist at CHOP, whom we hadn't seen since her initial VEPTR implant surgery a year ago, had her admitted two days early...which I was whining about all the way to Philly, actually ended up being a huge blessing. This allowed her to get albuterol treatments and examined several times to make sure her lungs were in good shape for surgery....I was so worried since the RSV and the docs had said she could have trouble. But he wasn't really aware of her RSV to begin with, so it's totally God that he just "happened" to want to admit her early to do a general pulmonary workup on MG. What confidence this gave us before the surgery. He also did a broncscopy during surgery and her bronchus (which was initially bent before veptr rods) showed that it was still wide open...praise God...the veptrs are doing so much to help her little lungs grow. Also, he has some other preventative treatment he wants to start when we go back up in 4 months that will help make her lungs stronger. Respiratory weakness is one of the effects of children with muscular dystrophy as they get older and the disease progresses. Thankfully she is showing no signs of this yet, except that her breathing is more shallow, but I feel so confident in our team at CHOP and in Bham that they are doing everything to help prolong this and make her lungs stronger and stronger.

Speaking of her muscular dystrophy....Dr. Mayer is also becoming involved in her diagnosis. He is good friends with Dr. Bonneman a world renown neurologist (who used to be at CHOP, but still sees patients there once a month) and has already been in contact with Dr. Pierre, our neurologist here in Birmingham. Well, Dr. Mayer called him up and discussed MG and we are going to get to see him at CHOP during our next visit. He has already been studying her case and biopsy and has some more specific thoughts on what she may have. So, we are getting closer knowing the type of muscular dystrophy...which is good...and ask you to keep praying as we find out more. I asked Dr. Mayer if children sometimes never get a specific MD diagnosis and he said, "they used to, but then Dr. Bonneman diagnosed them." We could have gone to several hospitals in the country to get MG's veptrs...but we chose CHOP for Dr. Campbell...and now I'm beginning to see so many other wonderful reasons why we are there.

And, one more thing about Dr. Mayer...he helped me register Mary Graham and our family in the CureMD registry. He said this is a great way to meet other families with similar diagnoses as MG and be up on new research and possibly participate in some clinical trials that may really benefit her.

MG did do well during the surgery, but I had not really shared that I found out later her recovery took longer (almost 3 hours) because she came very close to getting reintubated and placed on the ventilator. The doctors extubated her after the surgery and she was breathing very fast and not very stable.....but they gave her a drug to help her wake up more slowly and tried a different kind of oxygen tube down her throat. She took her sweet time (which is always the hardest part for me) but she recovered without a ventilator and was back breathing room air 2 days post op. This was exactly what we had prayed for...that she would recover well and without being on the ventilator. Not only this, but there was no sign of infection...at all. And Dr. Campbell is so pleased with how well MG has done with the veptrs, overcoming the infection and broken ribs. Praise God for being with her all the time and healing her.

Also, I posted a while back about Henry, the two year old who passed away 3 months ago. He was supposed to be at CHOP the same day getting his first veptr expansion. I had met him and his sweet mom on the very floor we stayed and we connected immediately since our babies were going through the same thing. She and I had been emailing and she said she was choosing joy through her pain, even though she wished she was bringing Henry to CHOP as we were bringing MG. This really helped my perspective. I prayed for her and thanked God for Mary Graham...for her life...for the way he made her...for the chance to be her parents...for the amazing doctors and team that has literally been placed in front of us...for the support and love of family, friends, and strangers....and for the chance to meet other families and their children from all walks of life.

The verse above is what I read before we left....it was if God was telling me to be still, be silent and let Him work. I was battling lots of fears this trip. So, while I was there I tried to spend more time being silent, praying and still before the Lord (and literally I really didn't text or email or talk to anyone but Lee on the phone) and it was such a sweet time of allowing and watching God work....showing me unexpected things and seeing Him fight for MG. One nurse even commented that everytime she came in our room, it seemed peaceful. I needed to let go of the control and when I did, He was able to do more than I could ask or imagine. It was as if I was the father of the sick boy in Mark 9......He asked Jesus, "But if you can do anything, take pity on us and help us." And Jesus answers, "If you can?...Everything is possible for the one who believes." Immediately the father exclaimed, "I do believe, help me overcome my unbelief." God can....I do believe....and he helped me see it with my own eyes....He has to help my unbelief. Little by little, he has increased my belief and trust in Him, not in doctors, or medicine or things of this world.....in Him alone. And I have faith that he will continue.

So now...back to normal life...school, soccer, dancing, therapy, and a fun surprise trip planned ahead for our kids :)...hoping for several months of good health, no surgeries or complications. Your faithfulness to pray has been incredible. Thank you for letting me tell her story. Took Lucy to the grocery with me yesterday and in the checkout line, she said out of the blue to the cashier, "would you please pray for my baby sister?" I was so taken back, she is very shy and this is unlike her. But I think God is using MG in all of our lives, which is my prayer.

Tomorrow is March 4th, two years ago she came in our lives and we were forever changed.....for the better. Thank you for loving and praying for her and our entire family.

Happy Birthday Mary Graham!