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 :)