Thankful

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

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

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

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

No place like home

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

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

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

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

Almost home

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

Smile

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

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

Thank you for praying us through this!

Baby steps

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

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

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

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

Thanks for your continued prayers.

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

Still miserable

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

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

Thanks for your continued prayers!

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

Rough day

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

All done

MG is out of surgery, on lots of pain medicine. But doctor was very pleased with implanting the new rods. He had to replace one right hook. Thankful she is done, please pray for recovery. 

Asleep

MG did beautifully-Lee was able to go back with her and help calm her while they got the IV in. The nurse said she did better than she's ever done. Praise God for this. It will be almost 4 hrs. 

Surgery

Mary Graham has had a good day, acting silly and sporting her new sunglasses and doesn't seem nervous at all right now. We've talked a lot about her surgery and we prayed for an early time and we got it...5:45am arrival (that's 4:45 central time-yikes) but we are thankful that she's first case. 

We would love prayers for a successful surgery, her doctors, no complications and her fears. 

Thank you so much for praying. This never gets easier, but how hopeful for the timing and opportunity for her to receive these MAGEC rods. The surgery should be about 3 hours. I'll update when I can.

CHOP

We made it to Philly yesterday and had good travel. We are already at CHOP this morning for appointments and blood work. Mary Graham seems in good spirits and asking lots of questions but I think it helps for her to talk about her surgery and what's happening. 

Thanks for all your prayers! I'll let you know later the surgery time tomorrow, praying it's early. As it's so hard to wait without eating or drinking. 

Hoping to get out some today and enjoy the city a little.

It's that time again...

My feet are strong, my eyes are clear

I cannot see the way from here

But on we go, He knows the way

And in His arms, He keeps me safe.

Fear not, keep on, watch and pray

Walk in the light of God’s highway

~Sandra McCracken

http://www.sandramccracken.com/godshighway/

I've been wanting to update since school started and now it's November! Summer flew by for us. It was a good summer, the kids did camps and we went to the lake and beach and MG (jumping in the pic above) was able to gain more and more strength in her hip and and now Mary Graham has started Kindergarten, Loftin is in 5th grade and Lucy in 3rd. Someone once told me time really starts to fly when your kids all get into grade school and I believe it. And, as you can see from the pictures below we added a little baby to our family named Scarlett. She's a goldendoodle and the sweetest dog in the world, we may be a little biased. But we love her. So, just when all my kids went off to big school I have a new friend to take care of -but she keeps me company while everyone is away during the day. 

Mary Graham has had a really good start to kindergarten. She has Lucy's same kindergarten teacher, whom we love and she has the sweetest aide who is with her much of the day. Also, she has a new "ride," her hot pink power wheelchair.  This helps her keep her endurance up through the day and keep up with her classmates, especially in such a large environment. We have had a few bumps, a few times she has fallen in PE or recess and hit her head, so this has been tricky because when she falls, she falls hard, without lots of strength to catch herself. So we have had to insist she use her wheelchair more when she's with all the other kids on the track....she hasn't been happy about that. It's like a switch went off in her and she decided to become Miss Independent. She has told me she doesn't like it when kids stare at her in her wheelchair. MG has always had so much confidence and still does. As I have watched her the last couple months we are entering a new phase for her and us.  I have seen her make tons of new friends, she is loved so well at this school. Her teacher laughs that everyone knows her-she gets so much attention everywhere she goes at school. I love hearing that, but I know when she is asking her aide not to stand by her or to want to run with her classmates and refusing her wheelchair, she just wants to be like everyone else. All the kids are so kind and love her-but I think she just wants to blend in. And I get that. Also, I think she likes not having me around so much and is so determined to just do and be like her peers. That determination will carry her far. 

For these last 5 years we have carried the burden of her disease and all her surgeries ourselves and for the first time I am watching her begin to carry this burden herself. She's growing up, becoming so aware of everything and everyone around her. Part of this has been hard to watch, but another part of me is seeing God shape her and letting me step back some and see Him guiding her journey. Because really this is her story, and I have been able to to be a witness (and document) all that God is doing in her life. Now my control (no sure I had that much) is starting to really diminish and I know it will only continue to do so. Of course, we will always walk beside her, helping her and advocating for her. But some of the hard things and pain she is going to have to carry herself-but my prayer is that she will only turn to God for help. This is what I want for all my kids, when they experience pain or embarrassment or disappointments in this life, they will turn to Jesus. What a challenge to me to have to loosen my grip, to hand them over to Him who loves them more than me.

Now, it's that time again....surgery. I think have mentioned since her last expansion last April that Mary Graham was a possible candidate for these magnetic rods, called MAGEC (pronounced "magic" which MG loves) rods to replace her current VEPTR rods. And that's exactly what they are. Instead of having to surgically go in and expand her rods every 4-5 months, she will have them expanded in the orthopedics office about every 3 months with a magnet that is laid on her back. So after she gets these rods, no surgeries, no incisions, no week long stay in Philly and no risk of infections or time for healing for an expansion. The expansions will be closer together than we are used to, but it will only require one night trip up to have this done. This is huge, I almost can't even believe this is possible for her. I know from experience that nothing comes without bumps or complications. But we pray this is the best decision we are making for her and have spoken many times with her doctors. It's hard starting something new, but we hope this is a really really good thing for her. 

We head to Philly this weekend and ask for prayers for our travel and for this big surgery next Tuesday. Because they are replacing both rods, and the MAGEC rods are more bulky, we aren't sure how she will respond, but I imagine more pain and a little longer recovery. She is excited right now about going to Philly (we hear there is a new American Girl Doll store), but when the surgery comes and she sees those masked doctors and nurses it gets very scary for her. Yet, another positive reason for these rods, her fears and anxiety. God has walked with us and I know he will continue to no matter what. We pray for her pain and recovery and for these MAGEC rods to be a very good thing in her journey. 

Just like the words of this song, "my feet are strong, my eyes are clear" and I am confident that Christ has my feet firmly in Him and my eyes are clear as I know the Truth of his promises. The harder part is the next line...."I can not see the way from here." But isn't this the way it is in all our lives. On this journey with MG and other circumstances we don't know what's just around the corner, but God tells that "on we go, He knows the way, and in His arms, He keeps me safe." There is great comfort in this.

Thanks so much for praying for MG and for us and I will keep you posted this week!

Scarlett

Kids think she's a stuffed animal

Off to 5th and 3rd grades

Ready for kindergarten

Quick trip to the beach last weekend

One week later...

This picture pretty much sums up how MG is doing, sang and danced in her preschool program today and didn't miss a beat. Her determination amazes me!

Thankful for your prayers of healing!

Home

We are home! MG is doing so much better and we are so glad to be back. These trips are like being picked up and dropped in another world and then picked up and put back in our real life.

We have lots to be thankful for and praying about the possibility of her getting magnetic rods this fall. These could be amazing for her. 

Thanks for praying us through this one-we are so grateful! 

Better day

Today Mary Graham is having a much better day. She was really nauseous yesterday and threw up a couple times and before bed. Her pain seems under control, she's complaining some, but we are about to board the plane to fly home. Yay! So thankful for your prayers of healing. 

Up and down

MG was in a lot of pain before she finally fell asleep last night around 10:00. She was having muscle spasms so Valium seemed to help that. She also was acting a little psychotic and I think a lot of it was all the narcotics and anesthesia. 

Thankfully she slept most of the night and is a little better this morning. She is hurting and we tried to go to the playroom (see pic) but it was too much and she threw up.

Hopefully she will improve as the day goes on and we can be discharged soon. She seems to do better when we get out of here I feel like that helps her mentally.

She has asked lots of questions, wondering why she has surgeries, how the doctor did the surgery, where are her stitches, what do they look like, and on and on. I explained that her back is curvy and the rods and doctors and surgery help it to be straighter and to help her grow. I think we are entering a new phase of her being older and being so aware of what's going on.

Thanks so much for the prayers and we are very thankful another surgery is behind us.

All done

All done, she did fine and we are with her now. She's pretty miserable and confused, keeps asking when her next surgery is going to be. I think she doesn't remember much in preop which is good.

Please pray for pain and recovery and no infections to arise.

Surgery

They just took her back, we have been here for 4 hours. She did really well for soooo long, was anxious and upset right before they gave her the versed. The nurse asked her what music she wanted to listen to and she said Taylor Swift 😊

It will be at least two hours-we are so tired but glad it's finally started.

Surprised blessings

So, it's been a long day, but everything went well. I'm writing this from the bed :)

We left around 10:30 and just had back to back appointments and never really had a break until 3:30. Mary Graham did amazing and  CHOP is so efficient. I've decided it's the most wonderful place you hope you never have to take your child :)

 

Our anesthesia team is well aware now of how anxious and upset MG gets in the operating room. She can't have the gas in the mask like typical children and adults so she is fully awake and is scared of the "mask people." But on her last visit here, the anesthesiologist was amazing (gave me her card and cell phone number) and we have a better plan this time. She will get more Versaid (silly juice) before they take her back to the OR and the anesthesiologist that will be with her tracked us down today on my cell phone to come meet us and MG so that may help her be more comfortable. She was about to catch the train back home but stayed to meet us-I'm amazed at how above and beyond they will go. And the child life specialist came by and played with Mary Graham and talked about her fears and is meeting us in preop tomorrow. So, we are feeling very well taken care of and thankful for these amazing people.

After seeing anesthesia and doing bloodwork, we went to ortho. Dr. Campbell has a new parter, Dr. Cahill, who is very experienced with veptrs and plans to take over when Dr. Campbell retires, whenever that may be. So Dr. Cahill is doing the expansion tomorrow. We really like him and we actually discussed the possibility of Magic rods (these are magnetic rods). When kids get these magic rods they have expansions in the office with a magnet that expands them through their back. So that means no incisions or surgeries for expansions at all. They are newer in the last few years and so they are not without complications. But it is definitely something to think about and pray about. I don't even know what made me ask Dr. Cahill about them, but I'm so glad I did and he actually did the very first magnetic rod implants. So we will see where God decides to take us on this.

Our day ended with us running into Josie. We met this sweet little girl about a year and half ago and the girls played at the hospital. Tonight we saw them at dinner and sat and visited with them. Josie is 7 years old and had her expansion yesterday and was up and had fun coloring with MG. it's so great to connect with these other families.

We are tired, but thankful for your prayers and these unexpected blessings today. We have to be at the hospital at 11:30, surgery probably not until 1:30, so it will be a long day and no eating after midnight. Since Mary Graham is getting older, she's not usually going to be first case anymore.

Please pray for our long morning until the surgery and that the surgery, anesthesia and recovery go well. Can not thank those of you praying enough-it carries us.

Will update tomorrow!

Here in Philly

Thanks for all the prayers, we had perfect travel. Even with a fast connecting flight. Mary Graham is tired, as are we, and she enjoyed coloring at dinner and now is watching a movie in her "comfy" bed as she calls it (pull out sofa bed :)

Full day of appointments tomorrow with ortho, Pulmonology and anesthesia with bloodwork and X-rays.

We are thankful to be here and that the day went off without a hitch. Grateful that God is in the details.

On the way

Would appreciate prayers this morning, heading to Philly with my mom and MG. Pray for safe and smooth travel.

Thanks so much!! 

Unfolding Grace

"So we are not giving up. How could we. Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good, the lavish celebration prepared for us." 2 Corinthians 4:16-17 (The Message)

Easter Sunday family pic

Eating at our fav place at the beach

The beach was beautiful for spring break

We have taught our Kids the art of putt putt :)

MG having a check up at the ortho-the fact that she can sit like that on the table and is smiling shows she's come a long way!

Turning 5 years old

Hello blog readers, are you still there? I have really fallen behind lately :(

It will be one year since MG's big hip surgery on April 9th-part of me can't believe it's been that long and part of me can. It has truly taken almost the whole year for her to heal and she is still making progress. She can definitely walk better independently and yesterday I told her to stop jumping on the couch! But she still is very tight through her hip and works hard at PT twice a week to stretch it and strengthen. And the lift for her shoe has helped some. How thankful we are for how far she has come in the last year.  

MG turned 5 years old in March. She was super excited, she told everyone she just felt 5, she felt bigger :)

 All day thinking back on the last 5 years, she's been through so much and still exudes joy. It makes anxious as I watch her get older and become so much more aware of herself, aware of her differences, her disability as she begins to ask me a lot do questions, like "when can I run fast like my friends?" "why do I have surgeries on my back?" And so on.

I watched her at a birthday party recently at a place where there were lots of high things to climb on and jump and slide. Some things she could do with my help, but I watched her frustration as some of her friends were enjoying those things and she just wanted to play with them, to join in, but she watched.  She fell a couple times and I felt like she just faced so much disappointment that day. But as we were getting in the car to leave, I was teary and thinking about her and of course she pops her head up from the back seat and says "that was so much fun!" She has such a great joy and confidence that I pray she doesn't lose as she gets older.

Lucy walked out of gymnastics the other day with a total look of disappointment, one I had not really seen so greatly on her face. She didn't pass the test to move up and her friend did. In her 8 year old mind this was a big deal. I was sad for her, but then I thought more about how this was a good thing for God to use in little ways to teach her about failures and disappointments in life. 

It's hard to watch your child go through a disappointment, and I'm sure they get bigger as they get older.  But God has shown me that through those disappointments and failures is when they begin to have a need, one that I can't fill....a need for something greater and to realize they can't get through life alone. They need a Savior. They need Jesus. Just like I do. Every. single. day.

The beauty is seeing God's unfolding grace in each of our lives if we begin to look for it. I love these verse above from The Message bible. Not a day goes by without the unfolding grace and we (and hopefully our kids) realize that none of this can compare to the coming good that awaits us. 

Mary Graham has been very busy....

This was a sleep study at Children's hospital in town a few weeks ago-she had to sleep in all of that! I couldn't believe how well she did. A sleep study will be a common thing for MG as we want to make sure her lungs and diaphram are still strong with her muscle disease. She is having some apnea episodes during the night they discovered and may need to start sleeping with oxygen. We are still exploring this right now though and going to see her pulmonologist at CHOP next week.

She was doing really well up until this point

Then they finished all the wires and hooking up-I can't believe she actually slept!

And, have any of you seen this video of this little girl? I watched it and it reminded me of MG and would love to see her have a service dog one day. I think it could be so cool!

http://abcnews.go.com/WNT/video/special-bond-young-girl-rare-genetic-disorder-service-34980708

Also, she's trying out a new power wheelchair that will help her with long distances, especially when she goes to kindergarten next year. It was a little overwhelming for her (and us) at first, but she's done well with it. This is a loaner and we will have to purchase our own soon. They weigh almost 300 pounds so we are still figuring out the logistics with it. MG says she wants a pink polka dot one :)

here's a little video (she's visiting Lucy's classroom)...

In other news, Loftin and Lucy are doing well, enjoying this spring weather and ready for summer. Loftin is playing soccer and turned 10 in March-that is unbelievable to me, he seems so old. Lucy loves school, piano, ballet and gymnastics. Last summer was so hard for all of us, with MG being in so much pain, it was hard for her to ride in the car, sit on the beach, change clothes, really doing anything hurt. So, as we are finally being able to breathe again, i'm really looking forward to a painfree summer. 

But first, more surgery....we are going to Philly next week for an expansion of her rods on April 14th. We would love your prayers for a smooth procedure and safe travels. I'm always so grateful for all of you that are praying. Our pastor yesterday talked about the story when the man who couldn't walk was lowered by his friends through a roof so he could see Jesus. He said that the friends in this story play such an important role. They were helping this man, supporting this man and bringing him into the presence of the Lord. I thought of our "tribe" and how all of you are lifting us up and walking with us through this journey. 

The other day MG over heard me saying to someone, "she has special needs" and  she turned and looked at us and said "I don't have special needs. God made me special." 

Yes, indeed. 

Thanks for your prayers over the next week with surgery and for reading this long post :)