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!