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. 

Out of surgery

Mary Graham is out of surgery and is still in recovery, she's in a good but of pain, but has finally settled out with lots of pain meds.

Dr. C said the left rod actually had a fracture in it, which is very rare. He replaced and expanded the entire left rod. The right rod had migrated thru one rib and he just put a smaller hook on it at the top, but said it should hold for a while and not need to be replaced for a while. So, he said she would be very sore with all the manipulating he did. Please continue to pray for recovery and pain. I think I age about 5 years during days like this. Praise God she is out and it's done and although they were very apprehensive about her cough, she did well. She was so upset leaving for surgery that she insisted I come and watch her be put to sleep, that is hard for me to see, will share more details of that later. 

Yours prayers are holding us up, so thank you. She's a tough little girl and we pray for a long time of no complications so she can get back to her cute, happy self. 

Judi Tuti

Here is how we ended our day, with MG's favorite dog Zena and the clown Judi Tuti (who mg was ok with for just a short time 😜)

We have had a good day, no snow, but very cold and we thought it was a good idea to walk back to RMH from chop until we got caught in 25 mph winds, craziness. 

Obviously we got into the RMH and are thankful to be here. I love meeting and seeing other families and MG is obviously having a wonderful time. 

She saw anesthesia and her lungs sounds good and clear and she's still coughing a little, but should be great by Wednesday. Dr. Campbell was so glad to see her and how big she's getting, she's so comfortable at chop (except for bloodwork) and just happy as can be. 

He said he would replace the left and fix the right rod also, apparently it has floated up and needs reattaching. He said this would be more painful than an expansion, but nothing like the implant surgery. Anna, his nurse, said it was a miracle that we got in for surgery so quickly and that these things always seem to work out. God is in the details. 

Your prayers are being heard, MG's cough is better, fever is gone and tomorrow we will hopefully enjoy the children's museum. Thank you for lifting us up!

Philly

Thank you for your prayers today, they have truly been felt. I have felt peace and encouragement. We are here in Philadelphia and we are already in pajamas about to go to bed :) I think it's 6:30 my time 😳. Mary Graham woke up last night with more fever and coughing, but she has had a really good day. We had perfect flights and met such kind people who asked why we were traveling, after telling them, we have more strangers praying for MG. She had a little fever today, but I believe she's on the mend and I'm thankful her surgery is not until Wed, we always have surgeries on Tuesdays so this is a good thing to have one extra day.

There was no room at Ronald McDonald house, so they gave us a discount at homewood suites, it's within walking distance of CHOP and this place is nice, we have a full kitchen (because we are going to be cooking a lot 😉), and free breakfast. We can still get a room at RMH tomorrow or later on in the week. But I'm thankful for a good day full of blessings and hopeful for a good night. 

We have appts later tomorrow with Dr. C and anesthesia. Thanks for all your love and support, it carries me through. 

Here's a pic of the back of a random bathroom door today, love how God can show up in the most random places.