14 days

MG had a good check up with the orthopedic today and her hip and femur are healing well. We discussed how she is loosing some weight and he is a little concerned about muscle atrophy or weakness because of her muscle disease so he said he wants to take the cast off in 2 weeks, instead of 3. Horray!!!

She will have to wear a harness for about a month until she's completely healed and then probably sleep in it after that. 

So thankful for one week less of the big pink cast than we expected! I know it will go by fast.  Please pray for the next two weeks and for her strength and muscles. I do have fears about when she gets it off and her hip and femur being in a different position now and relearning how to walk and just the unknown of the days to come. Praying for trust and patience in God's plan. 

Grateful tonight for all He has already done and that we are inching towards the finish line. 

Place of Lack

Last week Mary Graham got the stomach bug....I had a thought before she had surgery that wouldn't it be horrible if she got the stomach bug in the cast, how would that even work? She threw up in the yard, but thankfully it only lasted a day and she's feeling much better now. It was a slow week, but last Thursday she was able to go to school for 4 hours and she did really well. This was huge and such a nice break for the both of us. Hopefully she will go again this Wednesday.

During all the craziness of last week, I was reading a little devotion on the book of Ruth. The writer talked about how God provided for Ruth, at just the right time (Ruth 2:17-23), even if her life was not going how she probably would have chosen. She said she was living from a "place of lack." I have never heard it phrased that way. Aren't we all living in this "place of lack" so often,  lacking something, hoping for something, looking for something, waiting for something, the next moment, the next best thing that will make us happier? This is so hard. I know I am (especially these days) focusing on what I'm lacking and not focusing on the portion and my cup that God is holding in his hands, as the verse below says.
"But sometimes when we live from a place of lack, we find ourselves thankful for what is right in front of us." What a hard truth to understand. But God has us right where he wants us-we have trials and hardships along with joy, and, like Ruth, we may wish things were different. But the "Lord holds my lot" and when I focus on that, I see his grace and goodness and the beautiful inheritance he promises. 

Like when MG started getting sick last week-we were at my friend Laura's house. She went and got me coffee and then when MG got sick-she just stood there beside me and helped me hold her and care for her. God put her there at just the right time. And not many people want another child throwing up in their house-but she never complained.

Then, fun surprises will just appear in our mailbox-this one from my sweet friend in Nashville. Activities for MG and then a book for me (yes, it is called "Dad is Fat") and is a hilarious book by a comedian and his life with 5 children-I have laughed outloud reading this book-she knew that's what I needed.

Lucy danced in her ballet recital this week and it was beautiful and a treat to watch all the girls. They sang All in All with sign language-it was a sweet time of praise and worship. 

                                         

And, ones of MG's best friends, Mei Sims came over to play last week. I propped her up in her room and gave them lots of toys and Mei Sims just brought things to her and they played-it was a sweet picture of their friendship and how the cast didn't even seem to get in the way, even of them dressing up like princesses.

                               

So, even though we are tired and ready for cast-free days, there is so much goodness right in front of me. And these are just a few of the blessings we have received. God knows our lack and is right here with us. 

We are getting close to the halfway mark of 6 weeks (although the doctor mentioned one time she could have the cast for 8 weeks-I'm just pretending I never heard him say that). Please pray for tomorrow-we go for a checkup with the ortho and to have an X-ray. We pray her hip and femur are healing properly. Thank you always for praying for us and with us. 

Content

One week down and 5 more to go...part of me says "hooray" and the other part wants to run away-just kidding, well sort of ;)

But MG is doing so much better-she is hardly on an pain medicine and is sleeping much better. Praise the Lord! Friday everything had caught up with me and I hit a wall-just so tired from emotions of surgery and lack of sleep. Thankfully, she has slept really well the last two nights and we had a fun weekend with Lee's parents visiting from Tallahassee. They brought their puppy, Beckett, and MG loved him. He was a good distraction from being stuck in a cast.

Mary Graham has gotten lots of fun surprises from visitors and packages in the mail, balloons, stuffed animals, candy and lots of crafts. Puzzles, coloring and crafts have become our favorite pastimes these days. Mary Grahams said yesterday "it's like it's my birthday!" Crafts is not my fav thing to do with my kids, luckily I recruit Lucy to do some of them with her when she's home.
We are so overwhelmed with the love and support we are getting. Thanks to all of you who are walking with us, even in the times of exhaustion and stress, I feel your prayers. Someone will send a text or knock on my door and God sends his grace in the most beautiful ways.

MG is amazing me. My dad said to her earlier this week, "your pink cast is so cute, even though I know you don't like it so much right now." And she answered, "don't be silly, yes I do!" She is so proud of her cast, and so absolutely content. It reminds me of the verses in Philippians 4 about being content in all circumstances. These were some of the first verses I read while sitting in the waiting room of the first doctors office when Mary Graham was just 8 weeks old and we knew something wasn't right. I didn't want to know where God was taking us, and I certainly didn't want to know what it meant to be content in ALL circumstances. But God had other plans and I'm still learning and so much from this little 4 year old.

We are so thankful for her healing and sweet attitude towards all of this she has to go through. And her teacher came to visit last week and we are planning to let her go back to preschool some this next week. This will be such a help and she will enjoy getting out of the house-and I might just enjoy some alone time ;)

Always grateful for your prayers!

"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 4:11-12

Craft time ;)

Mimi, Lucy, MG and Beckett

More smiles

MG has improved over the last couple days-she is still not doing great at night, but it's getting a little better. This afternoon she didn't have to have any heavy drugs and we had lots of visitors today that helped pass the time and distract her. We are so grateful for God's work in her life. 

Yesterday 4 people texted me that they were going to the grocery store and asking if we needed anything. Then a girl stopped me in target and said "Are you Mary Graham's mom?" She then went on to say she was praying for her and us. God's love and mercy never ceases to amaze me. 

We went for a walk today and she got a new seat (one I found after researching spica casts and different ways to help kids sit up), so she can do more things at her little table on her own. I told Lee that I may have made some random Amazon purchases at 4:00 in the morning-just trying to make her as functional as possible :) 

I am hopeful for better days ahead and we are beginning to adjust to our new normal. MG is very heavy and I have noticed random bruises on me-but other than that we are making it. 

Thank you for continuing to pray!

Streams of Mercy

I don't plan to update every day for the next 6 weeks, but wanted to share.....I realized today, after going to Target by myself (yippee), where I was able to think some in the car, that God is pouring his streams of mercy on us and most of these "streams" are coming from you. Your prayers and encouraging words are covering us and lifting us up. Not only just the prayers, but logistical things-friends bringing me coffee, taking Loftin and Lucy to play this afternoon, my cousin who works as a PT texting me that she will come any day after she gets off work to help with MG. And tomorrow one of Mary Graham's Bell Center PT's in coming to keep her for a couple hours in the morning-and she is excited to come. Then visits from friends and her teachers. Our frig is full of yummy food that people have just dropped off and the many many texts and comments I get really do mean so much. It is a beautiful thing to see God's love and mercy through his people. So, thank you for being so willing to be a part of this journey with us. It is humbling and brings tears to my eyes.

Mary Graham had another bad night. She was up a lot and I know it's pain and not being able to change positions in her bed. I got up with her and put her in the bean bag and we turned on The Little Mermaid for "just a few minutes" I told her. Well, 1.5 hours later I hear her say "the movie is over Mommy." I was sound asleep on the couch beside her and she had watch the ENTIRE movie.

After being up a lot in the night (and enjoying a movie) she had a much better day. Lee took the older kids to church and I was able to get her maneuvered into her polka dot chair with a tray and we did a couple puzzles together and she was able to eat without me feeding her. I have another tray table coming tomorrow that will hopefully work better. And we are trying to get a potty seat to help stabilize her a little more, so my arms will not break off while trying to hold her. She was much more content today and smiled and took a very long nap, which I know she needed. And she just looks better, less swollen and no fever today. We were sitting the big porch swing later today and she says, "can I walk, can I ride my red car?" Then I remind her she is in a pink cast and can't do those things right now...and she just accepts it. How I wish I could be content in all my circumstances that God places me in.

So, I know it is just day 4, but today was good and I'll take it. We are praying for a better night-no movie marathon :) and more good days.


Come, Thou Fount of every blessing,
Tune my heart to sing Thy grace;
Streams of mercy, never ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet,
Sung by flaming tongues above.
Praise the mount! I'm fixed upon it,
Mount of Thy redeeming love.

Perserverance

Mary Graham had a rough night and was up a lot in pain and fever. And it's most painful when we have to move her, with her being heavy and awkward to hold. So we are all still adjusting. Today, which is a bit of a fog, she has been up and down. Still running fever off and on and crying in pain. But later this afternoon she has been a little more content and enjoyed some chocolate ice cream from our sweet neighbors and could lay on our big porch swing outside. And when she's not in pain she likes to give us all orders in a baby voice-I guess secretly she enjoying being babied again. 


I know she doesn't understand why she's in this big cast and with tears in the night she said "I don't want my pink cast anymore." And at one moment she asked if she could play when she got out of bed, I told her she could sit in the bean bag and watch a movie. We are working on some other "chairs" and ways to help her sit up better to be able to do more. Although right now we are just focusing on resting and her healing from this big surgery. 

My friend texted me and told me she was praying for perseverance. This is a perfect word to describe what we are facing. Some moments are just going to be hard, but God is giving us grace throughout all of this. We continue to pray for healing and comfort and rest for MG. 

Home

We are home and MG is doing better and is already asleep. Here's her life (and ours ) for the next 6 weeks :)

Picture

Just a glimpse of MG, her cast goes up to her arm pits, open on her tummy. She's sleeping a lot today and since she seems comfortable they may let us go home late today. Home is always better for everyone. 

Earlier she said she missed Loftin and Lucy and wants to go back to Birmingham 😊 And she's most sad that she can't move her legs. So glad she resting though and I'm always amazed at how tough she is.

New day

Last night we ended up in recovery for almost 3 hours, she was doing ok, just running fever and high heart rate. But mostly they were just waiting for a room to open up. So it was late when we finally got settled into a room. Her pain has been ok, we are staying on top of it. When I moved her from her recovery bed to her room bed (which is quite difficult now that she's in a hot pink cast!) it was very painful for her. 

Her doctor told us he did an open reduction (that is cleaning out the socket and scar tissue), a pelvic Osteotomy (taking bone from her pelvis along with cadaver bone to form a better socket), and her cut her femur in half, put in a plate and screws and then rotated it to get it to stay in the socket and then casted her. Wow. But he was pleased with the results and he said her bone was soft and not strong like it should be because it's never been fully in the socket and had pressure on it from the hip socket to create strength. And this should help the angle of her entire leg in a better position.

After she settled down last night she slept the entire night-that was huge. So I got to sleep too :). She is very swollen today, but her pain seems ok. I look at her in this cast and decided I'm just going to try and take things one minute at a time. It's going to be interesting and not quite sure how the coming weeks will go. They took out her catheter and she immediately wanted to go potty. The nurse helped me, but I picked her up, let's just say I'm going to have huge arm muscles after these 6 weeks. And it's difficult to get her comfortable.

So, it's a new day and we are so thankful that God brought her through that long surgery safely. For all the loving hands that took care of her. And her doctor prayed that we would know who the true healer and Great Physician is.  

We felt your prayers yesterday and saw Gods love through so many people. Please continue to pray for her healing and adjustment to the cast. We are so so grateful for your prayers!

Done

MG is done and in recovery. Longest surgery day ever! But she's doing ok and we are about to go see her. Dr had to do a lot to manipulate the hip, including the femur and grafting the socket. Please continue to pray, we have felt lifted up. Will update more details later. 

Surgery

They just took MG back. She did so well this morning waiting so long. We saw Her doctor and he prayed with us-it was so encouraging. Also, our favorite nurse/babysitter is here and MG was so excited to see her. She will have her in recovery. The surgery will take about 4 hours. Long day ahead. Please continue to pray for God to keep her safe during the surgery and no complications. Thanks for all the messages of encouragement-we have felt lifted up.

Changes

They have changed MG's surgery time now to 11:00, we have to be there at 9:00. This makes for a very long day (and no eating or drinking while we wait), and I spoke with the ortho nurse and the surgery may take at least 3 hours, especially if they have to cut and repair the femur. I am discouraged this has been changed, but I know God's timing is perfect and he has her in His hands. We ask you to pray for the doctors and nurses and our anxious hearts. I will update tomorrow.

Spring and Surgery

Here's our last few weeks in pictures.....

Loftin turned 9! He seems so big and for his birthday Lee took him hunting with his first real gun-he is in heaven in this picture

Off to Disney World for spring break

MG was mesmerized by all the princesses

Just look at their faces-not sure MG could smile any bigger

Riding Dumbo-girls favorite ride :)

Watching parades, lots of parades

Elsa and Anna

Fun meeting lots of characters and getting autographs

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Loftin and Pluto at Epcot

Snow queen

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Look who's in their hands

This happened most days-she usually slept in her face paint and clothes at night 

Disney=total exhaustion

Family pic with Mickey

We had the best trip-the kids love everything and despite a few melt downs, they did so well and we were sad to leave. Flying home we almost missed our flight-Lee and I were both completely exhausted and neither of us even noticed we had been sitting for an hour at the WRONG gate and then we hear "Sheppard party of 5, you have 1 minute to board" it was insane. We made it though and are now over Disney detox and kiddos went back to school today. 

And now, onto MG's surgery....she will have her left hip operated on this Thursday, April 9th here at Children's. She is first case, so probably around 7:30. The doctor is not 100% sure until he gets in what he will need to do, but he will most likely build the socket up with a graft and put the ball/hip back into the socket. He also said there is chance he will have to cut her femur in half and put in a plate and screws in order to get it in the socket at the right angle. We are really praying that the femur part does not have to happen. It will just mean more hardware in her body, more reason for infection, more pain, etc. Then she will be casted from the waist down to her left ankle and right knee for 6 weeks. I'm keep trying to figure out how this is going to play out, and it makes me sad and tired to think about it. There are many unknowns and that makes me fearful. I think because, even though she had this done at 8 months old, now she is 4 and walking and moving and doing so much, she has come so far in these 4 years. She still struggles with back pain and not sure how that will effect her without being able to change positions and move around.  It will be a hard season, but I'm trusting in God's promises.

A week ago this was the Call to Worship at our church taken from Isaiah 43...
"Let us worship God, who has done great things. We rejoice in our God, who has made a way through the desert of this world. Let us worship God, who has caused streams of mercy to flow in the wasteland. We are the people God has formed through Christ; we worship him, and we rejoice."

These promises of God are so comforting, I feel a little like we are about to enter the desert, but he will bring streams of mercy, he promises. They are new every morning and we will take this one day at a time. Below is MG this morning waiting in carpool to go to school, she just ate a blue sucker-can you tell? She is so happy and joyful these days, and I think that is what is making this the hardest for me to think about putting her through this. But we know it needs to be done to prevent major pain and arthritis at a young age.

So, we ask you to pray for the surgery, no complications, no respiratory issues, her recovery, her pain and our everyday life with her in a cast. For Loftin and Lucy and them having to watch her go through this and just the effect it will have on our whole family. Also, mostly for her little spirit. I have told her about the surgery and she is anxious now. She said she didn't really want to have hip surgery, but I told her she could pick out the color of cast, she picked pink. Pray for God's mercy to be evident-He always amazes me with His grace and love. Thank you all for praying for our family!