Turning 4 and what's to come...

Mary Graham had a wonderful birthday last week, she kept saying, "am I really turning 4?" It was so cute and we had a few little girls from church over for her Cinderella birthday party and it was magical. The look on her face in the picture above with Cinderella perfectly describes her feelings of "awe" over Cinderella. We are so thankful for who MG is and how far she has come-God's grace is so evident in her life. She teaches me so much about being content and joyful in any circumstances life may bring.

She has pretty much healed from her surgery at the beginning of February, although still complains at times about her back hurting. We have met with another orthopedist here in Birmingham at Children's and with lots of prayer we have decided to have her hip surgery here in town. I asked God to make it very clear about where and who was to do the surgery. As much as we love CHOP, we are glad that God has lead us to stay here. I never had a peace about having to go back up so soon. Even Lucy cried to me one night begging us not to go back to Philadelphia right now. These things can really effect our entire family.

The doctor at Children's also does VEPTR rods (not as many as Dr. Campbell) but I have been wanting to meet with him about possibly following MG with her rods and maybe one day doing expansion in here at Children's of AL. There have been many times that God has brought him to my mind and we felt lead to pursue him and see about him possibly doing her hip surgery. Also, with another hip surgery and a body cast for 6 weeks I definitely wanted it done before school was out, mainly because that would be miserable for everyone during the summer. And she will have to have another expansion in August :(

So, this ortho doctor "happened" to have a cancellation April 9th and we went ahead and scheduled it. Then my sister, in Atlanta, "happened" to have dinner with some friends one night and they were asking about MG and she told them about this doctor that would be most likely doing the hip surgery, and the friend just "happened" to go to medical school with him and his wife and loves them both. Then, a one of our nurses/babysitters from the pediatrician just "happens" to work at Children's now in recovery and has planned to be MG's recovery nurse when she comes out of surgery. And, our pulmonogist, who I love and respect said he just "happened" to run into this Ortho and they were talking about MG and he was very encouraging about us staying here and having him do the surgery. I love that her doctors are just talking about her and showing how much they care and love her even when she's not right in front of them. So, we thought all of those things gave us clarity enough to make the decision to do the surgery here.

It will not be fun. They will reshape the left hip ball and socket, and add bone to the actual socket. The ortho says it can be a very painful surgery and recovery-although he doesn't know how tough MG really is. I do worry about her being in a cast from about her ribcage down to her ankles for so long, not being able to walk and losing some of the strength and her abilities over the 6 weeks. I imagine it will weaken her and she will have to work hard to regain her strength when the cast is off and it will hurt her back to be stuck in the cast and unable to move. But, I will try not to focus so much on the "what ifs" and trust that God is in all of this, even if we weren't expecting all these surgeries. God is walking with us and none of this is unexpected to him.

Here she is at 9 months old when she had her first hip surgery-now picture this in a 4 year old.

Before all of this craziness begins-we have a few good weeks left and Spring Break is coming and we surprised the kids with a trip to Disney World-and we are flying, this will be a first for Loftin and Lucy-I think they are most excited about that :) So, the timing is great, MG will get to swim and play and enjoy the trip!

We ask for your prayers in this upcoming surgery-for the actual surgery, recovery, pain and life in a body cast. She has become so independent these days-she can almost get dressed, go potty, get out of her little bed, and lots of other things all on her own. It is truly the hand of God that she has made so much progress. So, I know it will be frustrating for her and her little spirit when she can't move on her own anymore and I think that may be the hardest thing to come. We appreciate and covet your prayers so much!

"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you. 

I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it. I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength." Philippians 4

Joy and Kindness

"Joy runs deeper than despair" Corrie ten Boom

As you can see above, Mary Graham is doing so much better since we have been home. It's amazing how tough she is-I believe she's over the hump and I'm slowing weening her off the heavy meds. Praise God for allowing her to heal so quickly, although the time seems to drag on when she's in pain. Your prayers have been heard.

There is more to the week than I have shared. Mary Graham's left hip is partially dislocated (she had surgery on her hips at 8 months old and was in a body cast for 6 weeks). Well, Dr. Campbell was concerned about it and had another ortho look at it who specializes in hips. He believes she needs another hip surgery to deepen the socket and secure the ball inside. Along with a body cast for 6 weeks. And it needs to be done soon to avoid arthritis setting in at age 8. Basically squeezing it in this spring before she goes for another expansion this summer. This news came the day after her surgery and we are still trying to process all of this. We are praying about where we are going to have the surgery, getting another opinion and seeking God's wisdom. I'm so sad that she is going to have to go through this and so many questions about how she will manage in a cast with her weakness and then having to relearn how to walk. And how we will explain all of this to her. I know God will walk with us and go before us.

I've been in a fog since we have been back-it takes me a while to get clarity back and look back on all God has done. I love the quote from above. A friend sent it to me and it is so true. Despair is something I have experienced at times with MG, but the joy that runs through me is deep and unexplainable. And times like these, I know it can only come from God. I read the verse in John 16 this morning, as Jesus is teaching us to abide in Him and in his love he says, "I have told you this so that my joy may be in you and that your joy may be complete." Complete, enough, whole and perfect. The joy that can only come from Christ and knowing that he is all we need, even in the depths of despair.

Our travel home was good....she fell hard asleep on the Philly to Atlanta flight home and then chatted it up with the nicest guy on our Birmingham flight. He heard her story, as she showed him all the pictures on my phone of our family (every. single. picture. even of Lee's scar from his surgery on his shoulder and pictures of her back-yikes) and all she's been through and said, "Mary Graham, you are my hero" to which she answered, "Do you want to come live in our family?" 

This was just one example of the kindness we experienced all week. I'm always amazed at the grace and love I see in people, some from those that don't know us or MG at all. From my sister who left her own family to come with us and support me (and make me laugh until I cried sometimes-the nurses would look at us like we were crazy-but we were so delirious at times). Also, two other ladies on the flight there talked to MG the entire time and played with her and said as we departed they would be praying for her and us. 

The kindness of those at CHOP is always evident-a nurse came just to stand beside me, while I stood beside MG, as they put her under anesthesia. This is so hard for me to watch-she can't have the normal drugs to be put under because of her muscle disease and she is so much more awake until they get the IV in her and put her under and she always starts throwing up and looking terrified before she's asleep. At one moment the anesthesiologist started singing "Do you wanna build a Snowman?" in his Brazilian voice :) 

For Lee, many brought meals for him and Loftin and Lucy, since he is only able to use one arm these days and healing from his surgery. Other friends had Loftin and Lucy over after school to play and distract them from missing us and being scared about MG's surgery. Lucy's teacher even had the class make a whole laminated book with get well letters to MG. Also, the shuttle drivers, and a precious lady, Marci, who owns a local coffee shop and sat and talked with us and loved talking to MG. We will be back to visit her each time now.

And of course your prayers, I had friends text me that they were up praying at 4:30 in the morning. 

God's hand is so apparent and visible. Dr. Campbell's nurse told us how it was just a miracle that they were even able to squeeze her in to have surgery so quickly. Dr. C has an insane schedule and another big surgery had been cancelled, which she said was so much better for that family too. God is working in all things-things God doesn't have to let me see, but he graciously does. And it confirmed that this was His timing.

I had been replaying a song, We Will Feast,  on my phone all week by Sandra McCraken (one of my favorite singers). She hasn't even released it yet, but came to our church and sang it, so it's a rough recording of that. Here are the words, which aren't nearly as moving without the music being sung.

We will feast in the house of Zion
We will sing with our hearts restored
He has done great things we will say together
We will sing and weep no more

Lee told me when I got home he had been singing this song in his head all week-I hadn't even mentioned that I had also. I love the part that we will sing with our hearts restored. One day we will all be restored, MG's body will be restored, with no pain or surgery. But for now, we are so blessed and full of joy for what God has done for her and all He has taught us through the despair and suffering.

When we saw Lee and Loftin and Lucy at the airport for the first time, Mary Graham cried, tears of joy as she hugged them all. She said "I missed you so much." My prayer is that her joy runs deep with all she has to experience and that she will sing and rejoice in what God has done in her life.  All of this is hard, but it's so beautiful in so many ways too.

We would love your prayers for MG's hip and that possible surgery and the decisions we will be making in the next week or so. Thank you so much for walking with us and praying. You have no idea how grateful we are.

Heading home

We are boarding in Philly and although MG woke up hurting (mainly because I didn't give her the heavier meds in the night) she is doing much better now. She even wanted to sit and play in the kiddie airplane at the airport. So I'm seeing some glimpses of improvement. Praying for good travel home. Please also pray for Lucy, she has the stomach bug. Not the best thing to come home to, so pray none of the rest of us get it. 

I have so much more to say about this trip and the kindness we have experienced from all around. 

Thank you so much for praying!

Ups and downs

We have been discharged and flying home tomorrow, so glad! MG continues to be up and down, irritable, happy, crabby, moody, in pain, and has told me that I'm being mean to her 😁. But I believe she's improving. So, we are all ready to get home and for her to feel better. Please pray for patience in her healing and rest for us all. We are so thankful she is through the surgery and I hate that she has to go through all of this.    Tomorrow is a new day and as I was reminded by a friend of this verse in   Lamentations....

22 "Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
23 They are new every morning;

    great is your faithfulness." 

God is so faithful through all the ups and downs and we are never consumed because he loves us so much. 

Thank you for walking with us and standing in the gap to pray.

Much needed sleep

MG slept much better last night, only up a few times, and I slept better too 😊Thank you for praying for that! She's still in a good bit of pain, but her little spirits are up and she's smiling more and we have gone to the playroom. She tires easily and it hurts to move her. But seeing some slow improvements. We are heading to get X-rays in a little while and I'm not sure if we will be discharged to today or tomorrow. But our plan is to still fly home tomorrow-we can keep her on the oxy and Valium even at home and I think we will all feel better once we get back home. Thanks for continuing to pray!

A little update

Today has been rough, but earlier tonight mg wanted to get in the wagon and go to the playroom. She had a deal with the nurse that if she drank more she could get the Iv out of her foot. So, she ate a Popsicle and got the Iv out. We only stayed a few minutes in the playroom. She is still crying out that her back hurts, and is having muscle spasms, but slowly I believe she is improving. I think it helped her to move a little. She also ate spaghetti and meatballs for dinner, so that was encouraging because she hasn't eaten all day. 

Please pray for a good night and less pain. 

Recovery

MG had an ok night, she slept some, but would cry out in pain, and has been up since 4 am. They are keeping her on pain meds around the clock. She is just irritable and sad, although I've seen a few glimpses of herself. I think the anesthesia is out of her system so that helps her feel a little better overall. It's difficult for her to even get up to go to the bathroom. She complains of her shoulders, chest and back hurting.

She has an Iv in her foot and one hand so she keeps saying "I only have one hand and only one foot, how am I going to walk?" And I think she's a little mad at Dr. Campbell, I told her he had to help fix her back and she said she didn't like that :( she's just so much more aware of everything as she is getting older and asking questions and trying to understand. Pray that I can help her understand. 

Thank you for praying, pray for pain, healing, comfort and rest. I know it's just a process, so pray for us to trust in the slow hand of God.