"Teach me to number my days, that I may gain wisdom....satisfy me in the morning with your unfailing love, that I may sing for joy and be glad all of my days." Psalm 90:12,14
MG riding the horse at Ronald McDonald House (pre-surgery)
Well, we made it home today after being discharged from the hospital last night. I do not think I could have asked for a better trip/surgery for us and MG. God truly blessed us every corner we turned and abundantly answered so many prayers. Thank you for praying us through this one. To have an experience like this in the midst of the long journey we have ahead of us with MG is actually encouraging. These trips can be tiresome, but we are so thankful for a treatment for Mary Graham's scoliosis and just ask you to continue to pray for no complications with her spine and good improvements. She is doing amazing, not too much pain today at all, mostly just when I move her. And of course, her sweet little spirit returned once we got out of the hospital-she still has some major fears. We will return again to CHOP in November for another expansion of her rods.
Also, a prayer request for some of you prayer warriors.....we met another sweet veptr family with a 5 year old daughter named Grace. She had surgery after MG on Tuesday to have her rods replaced. However, they found a mass behind one of her rods and are unsure of what it is at this point, could be a major infection. So, Dr. Campbell did the surgery, but she will be in the ICU for a while and her family is waiting results from the mass. Please pray for them and especially little Grace.
My eyes are always opened wider and wider every time we go to CHOP. But we trust in God's perfect plan for each of these children.
Please pray for us over the next month, we are going to start specific genetic testing for Mary Graham's muscular dystrophy, pray for peace and patience as we wait.
I had a hymn on my mind the whole time while we were gone, here are the words....
We rest on Thee, our Shield and our Defender. We go not forth alone against the foe; Strong in Thy strength, safe in Thy keeping tender, We rest on Thee, and in Thy Name we go
We are so blessed to have you all praying for us and MG, thank you so much. Even though we travel far away for these surgeries, we are never alone.
I had been told by many that the implant surgery versus the expansion surgery was like night and day....well, I believe it now. MG has done great today, she came through surgery beautifully, with no complications and Dr. Campbell was able to expand her rods about 1 cm each. Immediately she went to recovery and was in my arms after a few minutes already waking up. Today she has been sleeping most of the day and when we move her she is in pain, so please continue to pray for her pain to subside. She has already eaten some Mac n cheese and apple juice, and given us a few smiles.
So, although yesterday I talked about how everything seemed the same as when we were here in March, today has not...the difference is refreshing, encouraging, and just a huge relief.....and we are so thankful to all of you who prayed us through today. God has been with us every step of the way.
Praise God for a smooth day and please continue to pray for more improvements and healing.
"For you make me glad by your deeds, Lord; I sing for your joy at what your hands have done. How great are your works, Lord." Psalm 92:4-5
Deja vu has been the theme of our trip back up to Philly so far. We arrived yesterday with smooth travels and MG did great on the plane (this is always a blessing). The the Ronald McDonald house was full, so they got us a discount rate at the Sheraton (just like last time). Ate dinner at a local Mexcian place (just like last time). Then today, we had to be at CHOP this morning early for xrays, meeting with Dr. Campbell, bloodwork and anesthesia (just like last time). However, MG was hysterical during most of this, threw up all over the xray table...she remembers this place far too well. Being back at CHOP brought back lots of memories from MG's surgery in March, walking the halls, eating in the cafeteria, seeing familiar faces. Then this afternoon RMH house called and said they had a room open up and it was ours if we wanted (just like last time). So, off we go to the RMH and what do you know, we are in the same room out of over 40 rooms (just like last time :). I'm sitting on the same bed as I type that we spent those two weeks here four months ago.....so crazy. We are so thankful to get a room here though and have already met another veptr family, their daughter having surgery tomorrow after MG. And, honestly, all this familiarity makes me remember.....but I'm not thinking so much about the scary days we had with MG last March, but how God brought us through every step of the way. And I know this time is no different.....we have walked these same steps before and I can look back and know that God is still the same, he is unchanging and His faithfulness remains through the good and the bad. What a comfort to rest in these promises.
We ask you to pray tomorrow for Mary Graham, we will be at CHOP at 6:15 am, she's the first case. Dr. Campbell will lengthen both rods through two incisions. The surgery should last about 2-3 hours total, but the actual surgery is just about 30 mins. Please pray for a smooth procedure, no complications with anesthesia or her breathing (this is what I'm most fearful of because of all she went through last time) and for her recovery to be easy and with little pain. Pray also for us to have peace and faith that God has MG in his hands.
One cool story....right after we got to the airport in Birmingham an old friend of Lee's from Auburn saw us and called out to Lee (he hasn't seen him in over 10 years). He and his family walked up to us and he looked down at MG and said, "oh, is this Mary Graham? I've been praying for her." I almost burst into tears. How sweet that God would place them in our paths and what a encouragment to know people we haven't seen in ages are praying for her.
Thank you for continuing to pray-I will post more tomorrow after the surgery. Your prayers and support really mean so much and help us get through these more difficult and uncertain times.
Hope all of you are enjoying summer! Summer for us has been good so far, we have had some fun time at the beach and lake with family, sports camp for Loftin, art camp for Lucy, and all that's in between. Blogging has kind of fallen by the wayside, I started this a while back and have just added to it.....so it may seem a bit scattered, kind of like summer :).
MG has been happy and healthy and feeling good through it all. I can't believe it's been almost 4 months since her VEPTR implant surgery. We will return to Philly this Sunday for her first expansion surgery on Tuesday, July 24th. Also, we have an upcoming appointment this Friday with our neurologist here at Children's to discuss all the test results they have thus far on MG and her muscular dystrophy. There is still no definitive diagnosis of the type of MD, but I assume he will want to do some blood tests and possibly another muscle biopsy soon. The last couple months have been refreshing, as we have tried to focus on the present and how well she's doing, but of course, all that is coming in these next several weeks makes the realness return, along with the fears. Please pray for our travels and her surgery, it should be only about an hour long and a couple nights in the hospital, maybe just a week in Philly, if there are no complications. Please pray for no complications or sickness before then. Also, pray for peace as we learn more about Mary Graham and her MD. It's hard to digest it all. Pray for some hopeful and encouraging news from the doctors.
"How is Mary Graham?" I get this question a lot, sometimes multiple times a day....and I'm so thankful....so thankful that those of you asking are still concerned and praying for her. These days my answer is mostly, "she's good, really good, not in any pain." And this is true, but there is probably more I could say. I've been trying hard to get some video of her. Many of you only see her briefly and most of that is just in passing, some have never met her and only seen her in pictures. So, I have put some video of her together to show you the progress she has been making and hopefully get a glimpse of her little personality that is blooming. This is MG in a nutshell.....she is 16 months old and she is sitting up really well these days and beginning to reach further while sitting, she is talking a ton and can say, "hey there, mama, daddy, bye-bye, uh-oh" and many other words, new ones each day. Just today she said, "wa-wa" (water) and "flowa" (flower). She is not able to roll all the way over and push up to a crawl position, or sit up on her own. So, basically I have to place her in a sitting position, she can't get there by herself. She has just learned to stand up, while holding my fingers, from her little stool that she is able to sit on unassisted. This is major progress, right after her veptr surgery she wasn't putting any weight on her feet. She is very happy, rarely cries, but I can tell she is beginning to get frustrated and want to move more.....we have to carry her a lot since she isn't mobile yet. However, she is getting stronger every week and growing and we praise God for that. We try not to focus on what she "should" be doing right now and we celebrate these steps that she is making in her progress and continue to pray for God to show us great things through her. Mary Graham is just Mary Graham.....she makes us all laugh and smile a lot every day.
Just the other day, one lady asked me how old MG is, I told her 16 months and she commented, "bet she's starting to get into everything." This is where I don't know where to go with the conversation, so I said, "well not quite yet." This is where it gets kind of awkward, do I tell her about MG's disease, her surgeries, etc. Most of the time I don't and just pretend as though things are normal. Another time today a girl sitting next to me at the library with a baby the same age who was crawling all over the place, she asked how old MG was, I told her 16 months and she said her baby was too and commented how tiny MG was. As we sat there for a while, I know she was wondering why she wasn't crawling around like her baby. Then, as I watch Loftin and Lucy swimming and running and jumping this summer and I think, will MG ever be able to do these things? These moments, of course, are difficult and this is where I'm learning. Learning how to respond to these conversations, learning my own insecurities, learning to love her well just the way she is and not focus on what she "should" be doing, learning our "new" normal, and learning to follow Jesus through it all. You see, I have thought, and said to some of you, it is easier to face Mary Graham's muscular dystrophy at this point because she is a baby. She is happy, carefree and I'm the one taking care of her all the time. Some days I feel like everything is normal, despite her delays, and I catch myself thinking, "how could I really have a child with muscular dystrophy?" Plus, with Loftin and Lucy, we have lots of fun and crazy and joyful times these days, and I'm so grateful for these, even the ones when I think I'm going to pull my hair out with all these children :) But events like those above seem to sting and that's where the learning begins. Uncomfortable is how I begin to feel....I don't like feeling uncomfortable....I would much rather feel comfort each day of this life, wouldn't you? But when that comfort is shaken, that's when I long for more...shouldn't we all long for more than just a happy, comfortable life? I would love just to breathe a sign of relief that everything's going to be ok. But it is actually good for me to feel uncomfortable...and having an uncertain future for one of your children can put you there for sure....but it's good because I realize my dependency and comfort needs to come from the Lord. In Him I can find rest and peace and know that is really is going to be ok.
When going about the day, emotions come and go, but then I just look at her and she washes those away. God is showing me His goodness in the midst of it all. She's such a blessing, everything about her. And I have a feeling I will be learning from Mary Graham as she grows. There is much to be thankful for. This story really isn't just about my little girl with a disease, I'm learning that it is so much bigger than that.
This road ain't easy.......but two things I know to be true, that I'm learning and relearning each day.....as the verse says below....I believe in Him and He has given me an inexpressible and glorious joy. We rejoice despite our circumstances....despite our discomfort.
"In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire —may result in praise, glory and honor when Jesus Christ is revealed.Though you have not seen him, you love him; and even though you do not see him now, you believe in himand are filled with an inexpressible and glorious joy,for you are receiving the end result of your faith, the salvation of your souls." 1 Peter 1
I still believe that God has great plans for Mary Graham, better than I could have or imagine and I can't wait to look back one day and see all He has done.
There are so many things I could ask you to pray for...her future, her development, her surgeries. If you are still along for this ride, we are so grateful.....We covet your prayers and thank you for your faithfulness.
Now, if you have lasted this long reading my post, here is some video and a few pics from our summer.....do not feel like you have to sit and watch all the videos, it was just hard to capture everything on one...and my voice gets quite annoying on all of them :)
