The Secret of Joy

 

Thanks to those who have checked in and asked how Mary Graham and our family is doing. I can't believe it's been 3 months since I posted. The last few months have been full and good. 

 Mary Graham continues to improve and she is doing great these days. She is walking more on her own without her walker, building strength and still working hard to stretch her hip and leg back out in PT. It has been slow, but we have seen much progress. Her range of motion isn't back to where it was, but we are hopeful she will keep improving and not need another surgery on the hip. She is happier and full of energy and enjoying school and her friends. She got a lift put on her left shoe to help even out her legs (her left is a little shorter) and this seems to have helped too. And she won't need another expansion surgery in Philly until the spring. We have heard back from our neurologist at the National Institute of Health on her DNA blood work that was done over 2 years ago and this is narrowing down more of a specific diagnosis of her neuromuscular disease. The NIH doctors would like us to travel there (Maryland) sometime this next year to learn more about this and do more testing. Would love your prayers and we begin to understand more about Mary Graham.

As I reflect on 2015 there is so much I could say, but I'll keep it simple. God has been with us every step of the way, he has supplied our needs through the ups and downs. Here is the advent quote from Ann Voskamp for today that sums it up perfectly.

My prayer is that we all know the secret of Joy-especially as we approach Christmas and look ahead to what 2016 may hold. Thank goodness God is holding us. 

We are being held every. single. day.

Blessings to you and your families and thank you for praying for MG and our family this year.

"Jesus is the same yesterday, today and forever." Hebrews 13:8

Home

We are home, tired, but MG is doing so well. Will say more later, but so thankful tonight for all of your prayers and love for our family. 

Back to life

I started this update after we got home, but then Mary Graham got the stomach bug last week, throwing up all night and running fever, so it took her several days to recover from that and I'm always in a fog when I get home from surgery trips, so it's taken me a little longer to get back in the swing of our normal life.

MG is doing really well now and is back in school. Her pain was so minimal from this surgery, which was exactly what we had prayed. She started back PT today and she is still working hard to stretch and strengthen her hip. Thanks so much for all your prayers-it's awesome to see God in all the details. 

I spoke of MGs fears and they were really apparent this trip. But her anesthesiologist this time was amazing. The hard thing with Mary Graham is that because she has a muscle disease she can't get the normal drug in a mask that puts you to sleep, it would be risky for a malignant hyperthermia reaction which is very serious. But this makes her much more aware of everything in the OR and remember the nurses and doctors and I have been back with her a couple times when they put her to sleep and it's hard to watch. I asked her what scared her the most and she said, "the nurses and doctors with their masks on looking over me when I lay down."

Instead they have to use laughing gas to help her relax before the IV. This doctor came up with a better plan for MG in the OR and so things went a little more smoothly this time. And she talked about getting a child life specialist to walk MG through the process that is more child friendly next time around. She then told me she wrote everything down and gave me her cell phone number to call her before the next surgery and she would be there. What a wonderful and compassionate doctor....I was so thankful for this anesthesiologist and her compassion towards MG. If this was not God's grace I don't know what is. 

She doesn't need another expansion for about 5 months and we are thankful this one is over and ask for prayers against infection. Also, for her hip to continue to heal and no more surgery.

She got some new "doctor" supplies at the hospital for her doctor kit. 

Thanks again for your faithfulness!

Discharged

The hip is in the socket, praise God! 

 The doctor called my cell bc he came by room and we had already been discharged, to confirm the hip in socket. He is so nice and impressive. He said surgically releasing wouldn't be minor: go in same incision and clean out scar tissue and clip the tendons to elongate them. He said he's only done a couple of these before-so it's not very common. He said our ortho did a great job on her hip but MG just isn't responding like the norm, which we know.  He said give it more time to make progress until she maybe plateaus in her range of motion. Or maybe gets back full range of motion.

So we will pray and pray and pray she just makes progress on her own without more surgery. Thanks to all you prayer warriors for praying for this!

MG is doing well, her pain is up and down, we are back at the hotel and she's sound asleep. She is so tough. Her night was good, I was up most of the time because we were in a shared room with another little girl and that always makes things interesting. So we are tired but so very thankful to be through this one and I'm reminded once again of your faithfulness to us and the power of prayer. God loves to hear his people pray.  

I will update more after we get home tomorrow. Flying out early in the morning. Thank you again for your prayers and love.

Recovery

Mary Graham is in recovery, still sleeping, but expansion went fine. The ortho was able to get a little more range of motion in her hip while she was asleep, but it was still pretty stiff. They couldn't do the CT and will do it tomorrow instead. He doesn't believe it is out of socket, but wants the CT to know for sure. So, we will wait until then to come up with a plan for the hip.

Thanks for the continued prayers for her recovery. 

Big prayer request

MG did really well through all her appointments today. The hip ortho doctor said there are a few scenarios that could play out tomorrow. He's going to see how much range of motion he can get with her hip under anesthesia. If it's just as stiff under, he will do a CT scan. It is possible that her hip may have slipped out of the socket in the back and they would only be able to see that on a CT. If so, surgery would be needed to fix the hip again soon. If the CT shows it's still in socket, we will give her more time to make progress and work out the stiffness with continued PT before considering surgically releasing the muscle. 

So, our biggest prayer would be that the hip is still in the socket. I don't think I could even imagine putting her (and us) through another hip surgery and body cast 😢

As far as her expansion goes, her rods are still holding her spine stable and should be a typical expansion. Also her  Pulmonologist was so pleased with her repiratory and lung development at this point. 

We pray for a smooth surgery and recovery and we don't have to be at ChOP until 11:00, which makes for a later surgery, longer day and no eating for her. 

Thanks so much for your prayers! 

Pre Op day

We had a good trip to philly yesterday, got here around noon, checked in our hotel and then went walking around Rittenhouse Square, a pretty area with lots of fun stores :) We found a toy store and let MG play and she took a nap in the stroller. It was a beautiful day and nice distraction for all of us.

We are already at CHOP, first appt with hip ortho at 7:45. Got here as the sun was coming up, yawn. And then we see  our orthopedist about her expansion, X-rays, blood work, anesthesia and pulmonary doctor. So, long day ahead. But MG is in good spirits and asking when the people who will put her to sleep are coming. But she doesn't seem too anxious. 

There is lots of anticipation about the Pope coming to town, signs everywhere. 

I will update more later. Thanks for all the continued prayers!

Prayer

Mary Graham has really been doing great, she's walking more with her walker, and her PT has been able to stretch her leg further. Although they are stilled concerned about her range of motion and the stiffness of the hip this far out from surgery. But, we are thankful for the progress she's making and how much happier she is these days.

So, now on to the not so good news....we leave Sunday to go to Philadelphia for her rod expansion surgery. God worked out all the details and we have been able to get the hip ortho at CHOP (who just happened to have a coordinating surgery day as MGs) to manipulate her hip while under anesthesia for her rod surgery. This was something our ortho here was considering and I'm always advocating for not having to put her under anesthesia more than necessary so we are able to kill two birds with one stone by getting it done at chop. Both our doctor here in bham and at CHOP have a good relationship which makes things less complicated for us. I believe he will just see what her range of motion in while she's totally asleep and discuss if we need to think about releasing the muscle surgical. Which we pray doesn't have to happen.

MG is totally aware of everything, I told her last week we were going to philly for surgery and she is fearful and asking lots of questions and saying she doesn't want to go where they have to put the mask on her face. I knew the day would come when she would start remembering the pain and surgery and here we are.

 We ask for prayers for minimal pain after her surgery, no complications and her little spirit to feel peace that can only come from God. 

Pray for her to remain healthy, our travel, logistics with our other kids and a smooth week. My sister is going with me and MG, which I'm so thankful for.

We learned that the Pope is coming to Philadelphia the week we are there-crazy!  And the UN is meeting in NYC that same week. So it may be the most crowded we have ever see the city! I don't think the festivities for the Pope begin until Thursday and so we hope to be outta there and heading south that day :)

We covet your prayers and know that God hears and answers! 

1 John 5:14-15 "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him."

Our Rock

“The bows of the warriors are broken, but those who stumbled are armed with strength.....There is no one holy like the Lord. There is no one besides you. And there is no Rock like our God." 1 Samuel 2

These verses are from Hannah's prayer. She prayed for her son and rejoiced in the Lord's strength. She stumbled, she was broken, she felt like there was no hope to have a son. But there was. She kept praying and hoping and God answered her prayer for a son.

I decide to let some time pass before posting so MG's progress would be more evident. She is beginning to use her walker more and Friday at PT she surprised me with walking a few wobbly steps to me all by herself. She's still hunched over and can't get her leg straight-but this is huge progress and we are so so grateful! It brought tears to my eyes to see her do this. MG has stumbled the last several months, been broken and we have felt like there was no hope at times. But somehow we have been given the strength to move forward and then get to rejoice when there are days like this. He has been our Rock throughout the last 6 months and continues to be.

We continue to pray for full recovery for her, for her hip to straighten out and strength for MG. She's so much happier these days, her pain is diminishing and starts school back this week for her.  I'm no longer hearing "mommy I hurt" all day long. 

MG will have surgery to expand her rods in her back in Philadelphia on September 22. I hate she has to have this done, but we have put it off and she needs her rods expanded. We pray she gains even more strength before this surgery and this isn't a huge setback. But it is another surgery and we pray God covers us like never before going into this one.
Hope you can see this little video of MG!

Thank you for your continued prayers!

Moving

This is Mary Graham on her little bike. She can scoot around the house and even took it to preschool today and used it. Her teacher said in recess they played with balloons in the fellowship hall and she scooted around and played. This makes me so happy to picture her playing like her friends and not sitting on the side watching.

PT has still been very rough, but we are seeing a little progress. She will make progress, and then regress the next day. Lee said it's like we start over every day with her. Her PT said to focus on getting her to move as much as possible. We are letting Daphne stretch her at PT (it was too much of a struggle for me to do it) and we are focusing on moving around more and getting stronger all over. So she is crawling around the house some and trying to get up and stand some in her walker. Her hip is still really really tight, and she still holds it up and it's hesitate to put weight on it. Please continue to pray that her hip muscles will stretch and strengthen to still avoid surgery to release the muscle. Would love to see great improvement over the next month.

This week, however, I feel like overall she's just happier and her pain level is somewhat better. She is wanting to move more and that is a huge step in the right direction. 

So, our prayers are being heard and I'm more hopeful than I have been in a while. I know that hope has come from God and as restless and impatient as I have been over the last few months I have more peace about her these days. And just resting more in His plan and timing.

I have attached a link of a talk I did this past week for a group of women at our church. I was asked to share Mary Graham's story. It was emotional, and I don't love public speaking,  but I was glad to share about all God has done. You can click on the link below and listen if you would like to hear it. 

http://www.covpres.com/showcase/jennifer-sheppard/

Thank you all again for the prayers!

Working hard

Mary Graham has been working really hard in PT the last few weeks. It's hard and painful for her and her hip is still extremely stiff. She does have more range of motion in her knee. And the picture shows her wearing her new brace to try and keep her leg straighter. She is suppose to sleep in it and wear it a couple hours a day-she doesn't love it and it's uncomfortable, but we are doing pretty good at getting her to wear it, with a little bribing involved :). She can stand for a few seconds in her walker, but not straight up yet, as she is still holding her leg up like a frog. 

She is definitely happier these days, loves to play and sleeping much better and mostly her pain is bad in the morning after she wakes up, but gets better as the day goes on usually. We are very thankful for these things.

We are going to continue on for another month or so with PT and hope her hip will loosen up, if not there are other ways (surgically) to help-we are praying that we don't have to go that route.

So, she's making some progress and seems to be a little stronger overall-it's just slow, which seems to be the theme of this recovery. Tonight in bed she asked me, "mommy, why did I have to have this hip surgery?" And I told her to help fix it. She then said, "no, why?" So, I explained more in detail that her hip was in the wrong place and the surgery was making it stronger. She's getting older and definitely asking wanting to understand more. She talks all the time about when she used to walk and when she's going to walk again-it just seems so far off at times. 

We ask you to pray for her hip to loosen and lengthen and for no more surgery to be necessary. Also, for her to continue to gain strength. Thank you for your faithfulness to pray!

Her storm

Who kept Noah safe from harm?

Who brought him safely through the storm?

Who kept his promise? Yes it's true

Who does just what he says he'll do?

Yes, God's the one. And guess what's true?

Little one, in the storm, God cares for you.

These are the words from one of my favorite songs on the Rain for Roots album for kids. This song has always reminded me of Mary Graham and I have prayed she would know God's promises and love through her disability, her pain, her "storm."

Last night we were able to here Sandra Mckraken and the singers of this album live in concert. Lucy and MG loved every minute (Loftin mostly talked to his friends:). But that pic is MG singing and snapping to this song. She was the happiest I've seen her in a long time. 

PT is going well, it's hard for her. She was teary at first. But she's starting to move more and overcome some fears of pain. She has lost a lot of muscle and strength all over, but slowly I see her regaining it. She's even talking more about when she will walk again and getting her drive back. Fear has been a huge hurtle for her to overcome after this surgery. Sleeping is still not very good. She cries off and on in pain at night. And the mornings are rough because now she's really working her muscles and she's hurting in the morning. We look forward to the day when she can really rest and sleep soundly. 

Praising God for moments like the picture above and baby steps towards walking again one day soon.

 

Little update

Mary Graham had a follow up with the orthopedist this week and he was concerned about her pain and stiffness 10 weeks out now from surgery. She has improved in small ways, but he wants to see her again in a couple weeks for an MRI or CT scan to make sure the hip and femur and in the right place. Mainly his concern is that she has not yet straightened out her leg or hip, it's still up in a frog position. But if she shows good progess these next few weeks this won't be necessary.

PT began this week and she is seeing Daphne, her same PT from school this year-so that's helpful. They took it slow (me and big kids left her since we know she'll do more without me there). It went well and we have some things to work on at home. And we went to the pool today and that's so good for her.

Sleeping is not good right now, she is completely out of her harness so moving in her sleep is painful. 

One improvement we have seen is being able to sit in her booster seat again at the dinner table, she was so proud of this. 

And she went to vbs this week and spent time singing and making crafts and hanging out with her friends-she loved it, it was exhausting for her, but so good for her little spirits.

So, prayers for progress, less pain and sleep. Grateful for your prayers!

Healing

Healing is something that takes time. It's slow. It takes patience. It's something you can't see, you almost have to look back to realize it is happening. 

Slowly Mary Graham is making progress. The pain is still there, she is still stiff and hurts to be moved. But she's getting better.

The beach was so good. It was hard at first, the car rides were painful for her, even putting on her bathing suit was painful. But gradually each day got better. Her nights are better too. We left her harness off much of the day. She hurt off and on, but we just kept going (with a little oxycodone to help) and took her to the beach, she sat in a little pink chair and played in the sand, we carried her in the ocean and helped her kick her legs the pool. There were lots of tears at first, I believe much of which was fear. But the best part was that we saw her little spirit begin to return. She laughed more and wanted to move more and realized for herself that she wanted to do what everyone else was doing. One of her best friends happened to be there and MG watched her run and jump and I think that willed her to want to do more.

And now that we are home, her little will and spirit is even brighter. I had almost forgotten how this was taking such a toll on her mentally even as much as physically. I know the physical rehab is still going to be tough, she starts PT next week. But we are so thankful that her smiles and laughter that have returned. Praise God for hope in the midst of all of this. Thank you for being so faithful to pray. 

She is healing and I can see it now. 

Sustained

Mary Graham slept better last night-we gave her oxycodone and was up until almost midnight, but then she tried sleeping in her bean bag in her room and she slept until 5:30, and so did we! Lee told me he took 2 Tylenol PMs around 10:30 last night just so he could sleep better (he's in a bit of a fog today ;) but that sleep made us all feel much better today. 

Anyway, thank you for praying....we are feeling sustained. At times it is so consuming right now and I don't like feeling so needy at times, it seems somewhat self absorbed and I know we are just anxious for things to return to normal. But I get to see God's love and mercy through his people. You all are lifting us up and it's humbling when I know you have full plates also.

God is providing and we have much to be thankful for. Her days are getting a little better and we are planning to head to beach tomorrow for several days. Not sure how this will go, riding in the car that long, but at least we get a change of scenery and hopefully she will try the pool. Although she says she doesn't want to put on her bathing suit because it will hurt her leg :( Praying we can make some progress there with her pain and stiffness and she will have fun and not be so fearful.

Thanks again for your prayers for our family! 

Prayer request

MG has taken some steps backwards and is now not sleeping well at all. She is up, crying most of the time, from about 9:30-3:30, for about the last 3-4 nights. She says she's hurting, but there is only so much we can do to help her pain with meds and trying to change her position. It's almost like some of her pain and restlessness is when she's not fully awake, like night terrors. 

Needless to say, we are exhausted and feeling a bit helpless. I'm a wimp and don't function well on little or no sleep. Would love your prayers for her to sleep and continued for her pain. She's doing pretty good during the days, seeing some improvement, just still up and down. The doctor said with her muscle condition it's just going to take her longer to recover. 

Loftin came home from Alpine today and showed me his verse from the week in Isaiah 40. God knows what we need. Thanks for praying!

27 28 Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
29 He gives strength to the weary
    and increases the power of the weak.
30 Even youths grow tired and weary,
    and young men stumble and fall;
31 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

The Best

This is the best doctor, he has been Mary Graham's Pulmonologist for the last 4 years and yesterday we had to tell him goodbye....he is moving to Florida to work with children there. 

He is the kind of doctor that I could text in the middle of the night, been a liaison between CHOP and here, always had great compassion for mg and our family and told me yesterday though tears that when we first brought MG to him at 4 months old, he worried about her a lot and that things looked so grim. But he said she has done amazing and he doesn't worry about her in that way anymore. She is a miracle.

Those were just the words I needed to hear yesterday-she has come so far and this season is hard, but there will be brighter days. She had X-rays and her lungs have never looked better either. This is so encouraging.

She smiled and laughed with him and asked why we were crying ;) He will be missed, I'm so thankful for God putting him in our lives at just the right time.

Making progress

Summer has begun and we were able to go to the lake with my family this weekend-it was a such a nice change of scenery and so helpful to have lots of people to help with MG and cousins to entertain her. It's like therapy for me to go there and be still, eat good food, enjoy the sunshine and sit on the porch and talk.  And we started seeing more improvements in Mary Graham. She even did a couple of slow boat rides.

She has started asking when she will be able to walk again and I know she is scared. Yesterday she said, "I can't wait to rip my harness off and run around, will I be able to do that again Mom?"
The pain she has been through these last couple months has been and is still intense. And she is still healing and working through the stiffness. She has some really good long stretches of no pain where she's happy and plays, but still having some pretty hard times of pain also, mostly in the morning when she's stiff and sore. She is sleeping much better-although last night was not good. It's almost like she is having nightmares about her pain because she will whine and cry without waking up. And we are starting to let her sit without her harness on so she will start moving her left leg and hip more, she's actually suppose to leave it off for 6-8 hours, but she hasn't lasted that long and always asks to put it back on.  The pain is different now that she's moving her hip a little bit-it's kind of hard to explain. But we are very thankful for the progress she has made and pray for more improvement over the coming days and weeks.

I'm so glad things are slowly looking up. And we are definitely having some joyful times and those are so refreshing. As I have looked back over the last few months, I have decided I'm not a very good sufferer (is that even a word??). I can be whiny, complain and just annoyed that this is not my plan and I would much rather be enjoying the summer in a different way. Our pastor said the other week, "it's often that we look at our lives and things aren't what they ought to be, or what we had envisioned."

This year has been a trying year for many reasons in our family. I know and believe with my heart that God is in all this, he's sovereign and in control, but my mind has a hard time catching up at times.  And i'm very forgetful of these truths.  At times I have been bitter and just sad for her and all that we took away from her with one surgery. I hope and pray she will get it all back, but it's hard to watch and wait and wait some more. I read something the other day about lamenting. My prayers these days have mostly gone something like "help Jesus." And I know he hears. The Psalms are full of laments of those crying out to God-he wants us to. That's when we have complete dependence on him. Then I read these verses today from Hebrews 5.....

"During the days of Jesus’ life on earth, he offered up prayers and petitions with fervent cries and tears to the one who could save him from death, and he was heard because of his reverent submission. Son though he was, he learned obedience from what he suffered." 

It's all a learning and growing process. And Jesus truly understands. And that's the greatest Truth. 

Thanks for continuing to pray.

We feel loved and lifted up so much! 

 Here are some pics of the last week or so. 

MG has started wanting to dress up again-a good sign she's feeling better, a bad sign for me to have to change her costume 15 times a day ;)

Lake time

Relaxing

We dropped Loftin off at Alpine Camp for Boys for 10 days-I miss him so much but know he's having a blast

Car rides have been very painful, but we decided to try her old car seat (instead of the one we have been using for her cast) and she fits! And this may be the answer to less pain in the car.

This was MGs first real outting. About 30 mins at the library. I plopped her on this huge dog and Lucy read to her-sweet sister moment ;)

Glimmers

In the sleepless nights this week I have prayed for some glimmers. Just small signs of improvement from God to show us MG is improving. And thankfully we have started to see some. Her pain is less constant, she is up and down. Although still is pretty awful when we have to take her potty or move her or her Motrin wears off.  Distraction and playing seem to help and baths, lots and lots of long warm baths. I even sat her in her high chair that she used with her cast and she lasted about 2 minutes, but it's a start. But, after 3 nights of almost no sleep-she finally slept last night-praise God! I went to sleep at 7:30, and she was only up for a little over an hour in the middle of the night and two hours the night before. So we are beginning to see some "glimmers."

Because this was such a huge surgery (including broken bone being exposed) and she isn't quite 6 weeks out yet she really is still healing. So our biggest prayer now is still for pain. She has slightly moved her left knee-she will have to do this on her own, we are not forcing anything right now. That stiff knee is connected to the femur, which is connected to the hip, so that is why it's so painful. We try and make it a game and ask her to swing her leg ten times while we count.

So, this is just going to be slow and I feel like we are starting to come to the reality of the hugeness of this surgery that this is just going to take time to heal, to recover and regain all her strength to walk again.

Summer starts in 4 days. Loftin and Lucy are so excited about summer and they have been such troopers through all of this. They consume our hearts and lives and energy just as much as mg. I have had to miss out on some this spring-Lee and I tag teaming soccer games and trying to help with end of the school year things, but much of that has fallen by the wayside. But Loftin and Lucy understand, they are used to all we go through with MG and for that I'm thankful. But I know at times it's hard for them to see her hurt and how she requires a lot of attention, especially right now. Lucy moved to sleeping upstairs with Loftin this last week since MG was so loud at night and they are having fun together :) I hope to spend lots of time at the pool, this is a great place our PT said would help Mary Graham get back range of motion.

I'm praying for supernatural strength and healing over the next month and through the summer. God never ceases to amaze me and I know it may be hard at times (you can specifically pray for my patience), but He's got MG in his hands and I know he'll be with us with through this journey and faithful like he always is.  Thanks so much for continuing to pray, we are so thankful for the little improvements so far and pray for more and more glimmers.

About the same

Mary Graham was up most of the night in lots of pain. I spoke with the nurse and this is fairly normal with the kind of surgery she had and being casted for 5 weeks and I have her on big pain meds. She is having some moments of contentment, but trying to move her or take her to the bathroom is excruciating. She says, "please don't hurt me when you pick me up."

She pretty miserable and says her back hurts and her knee (it is still bent like it was in the cast). This is some of the worst pain I've seen her fight in her 4 years and through all her surgeries.

Please continue to pray for for healing and some pain relief to come soon. It's hard knowing how to help her right now and just being patient for her to get back to walking and moving. Thank you for all your encouragement and lifting us up. 

It's off

The cast is off and she is in tons of pain. She is crying off and on about her knee, back and hip hurting. She asked to have the cast put back on and says she can't move her leg.

The harness will be on for at least 4 weeks all day and night. No walking or PT for a month or so.

Please continue to pray for her pain and the long road ahead for all of us. 

One night more...

Just one more night in the cast! MG gets it off tomorrow morning. I feel like this day has been in slow motion waiting for tomorrow to come. We are excited and anxious. 

She still isn't sleeping great, it's getting hotter and she desperately needs a bath. But we have made it through what I feel like is the first giant step in this unexpected hip surgery this spring. After she gets the cast off she will get a Velcro harness, and will most likely wear it all the time for another month. 

MG is still very happy (and a little bossy ;) these days. But she keeps saying, "when I get my cast off I'll just be able to walk and swim!" She wanted to just hold her bathing suit last Saturday and put on her flip flops because she saw Lucy wearing hers to go swimming with a friend. So I pray her sweet spirit will continue even if she can't do all these things right away. But I believe that her determination will drive her.

 Because the doctor cut and turned her femur to get the ball in the socket, her knee and leg now face forward (her left foot and knee were turned out before) and she will now need to learn to walk with different muscles. The purpose of this surgery was to stablilze her hip in the socket and prevent early arthritis. 

I have no idea what to expect as far as her strength or pain and when she will be allowed/able to walk again.

But I do know that God is faithful and that she's a pretty amazing 4 year old and it may be a slow summer, but we pray she gets all her strength back. So, lots of unknowns-I have a hard time in the unknowns of life-but I'm learning to trust and hang on and I get a front row seat to watch God's hand a work.

We covet your prayers, your love, your support-I am constantly overwhelmed by it all. 

Pictures to come tomorrow!!

Bubbles and a body cast

How can anyone be so happy in a body cast? We are on week four and I see the light at the end of the tunnel. God is good, thanks for continuing to pray.

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.