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."