Sunday, November 27, 2016

Thankful



 Hope you all had a wonderful Thanksgiving! We have much to be thankful for and MG has definitely turned the corner and is doing much better. She is playing and much more active, still having to rest in between some. But her pain is being managed and she does still complain some at night of her shoulder and back hurting or she has said, "my back feels tight" but we just using the heating pads and Motrin. It will take some time to get her stamina back up. We are so thankful this surgery is behind us and still praying for her recovery and no infection to arise. We will return to CHOP in a few months for her first MAGEC expansion. 

I have been thinking that it may be time for my blog to come to a close. Recently, before this surgery, I just felt in my heart that we are beginning a new chapter with Mary Graham and she is getting older, more aware of herself and who she is. In fact, we are traveling to the NIH in Washington DC very soon so the doctors, along with us, can learn more about her muscular dystrophy. As I said earlier, she wants to be like everyone else. I want to protect her privacy and just let her tell her story when she wants to. I have loved writing here, it is like therapy for me and your prayers mean more than you could possibly know. I had the chance to read back through most of my blog last week and I just am still in awe of God's hand in her life and ours. I hope one day she can read it and see God's faithfulness.  I'm not sure what the next chapter for us looks like. Thank goodness God goes before us and I have clung to this verse from Jeremiah from day one. He has brought her so far and through so many scary and unknown times and shown us so much of His love and goodness. I know her story isn't over yet, and she will have more surgeries and procedures as she gets older and we will continue to call to Him and he will answer. He loves her so much.

You will never know how grateful we are for your love and support. Please email me if you ever want to know how she's doing. So many of you have been so faithful. Thank you for loving us and loving her so well. 

"Call to me and I will answer you and tell you great and unsearchable things you may not know." Jeremiah 33:3





Saturday, November 19, 2016

No place like home

We made it back to Birmingham with MG just laying in my lap in the back seat. She had a rough night, but I wasn't on top of her meds and let her go too long in between. So now I have 18 alarms on my phone so not miss one. Whew! We are tired but so so glad to be home. Her spirits are up and I knew her mental state (and ours) would improve if we just got home. 

She walked some today with her walker and is having some content moments in between pain. So that's some improvement! Scarlett, our puppy is helping make her feel better too :)

Thank you all so much for your prayers, I'll update in the next few days as to how she is doing. I know your prayers and God's grace carried us in supernatural ways. He always does.

Please continue to pray for no complications or infection to arise. Amazing to think she won't have another surgery for a very long time. This was her 18th surgery and I think it's time to take a break, don't you? We will return to Philly in a few months for an expansion in the clinic. But for now we just praise God for his goodness and healing.

Friday, November 18, 2016

Almost home

We made it to Atlanta, it was not easy, but we made it and are very thankful. Thanks for praying! More later.....

Smile

Got MG to smile for me for a minute while we tried playing stickers. She's doing better but it's still very painful to move around. She's now on all oral meds and I pulled her drain out accidentally last night (just helping out the nurses :). So she's no longer hooked to anything.




Our plan is to fly to Atlanta this evening and spend the night there. It's about 2 hour flight. Pray for comfort and her pain as we travel. It won't be easy, but getting out of the hospital I think will help her mentally also. 




Thank you for praying us through this!


Thursday, November 17, 2016

Baby steps


We are seeing some tiny improvements. I found a little yellow wheelchair in the lobby of the hospital that I snatched and she went for a ride. PT came and made her walk several steps, which she sobbed all the way through and needed rescue meds when that was all over. But it is some baby steps. Staying another night in hospital and trying to change flights and logistics of how we are going to get home. 



She'll probably kill me one day for this pic but her eyes have really been itchy and bothersome so she has had ice cold wash clothes on her eyes much of the time and this is the first time she's had a shirt on the whole time. Along with several heating pads, her nurse and I joked that she looked like she's having a day at the spa.




Emily, our Samford nurse is back today. This is such a divine intervention and small world. Her best friend was one of our babysitters and she grew up going to The same church in Atlanta that my sister and her family go to. Been so wonderful to have her taking care of MG. 




This pain reminds me of the hip pain after getting her cast off, which of course we never wanted to go back to. She has been through so much pain in her little life and yet once she gets through it, on the other side she is full of joy. 



Thanks for your continued prayers.


"So also you have sorrow now, but I will see you again, and your hearts will rejoice, and no one will take your joy from you." John 22:16

Wednesday, November 16, 2016

Still miserable

MG is still battling lots of pain. She has been able to sleep some but when she's awake she's hurting a lot. So we haven't quite gotten over the hump. We are so used to her bouncing back fast after expansions and so this one was a lot for her little body.

It will take time I know. In the hospital time is so warped-one hour seems like 2 days. 

Thanks for your continued prayers!


On a side note, our nurse today is from Samford and when she heard us talk she asked where we were from :) she just graduated and has always wanted to work at CHOP. She's so sweet and calls MG "Mary Graham" instead of just Mary (in a philly accent). Been fun getting to know her :)

Tuesday, November 15, 2016

Rough day

We are wiped, and she's super needy, but wanted to send quick update. It's been a rough day for MG. Pain seems so be a little more controlled as we found some different meds to try. She's still on oxygen which she hates and says "my magic rods hurt." Just trying to make her comfortable enough to sleep. The first 24 hours are always bad, and I know it will take time after all she had done. Praying for peace and comfort only God can give.