"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 :)
Eight years ago today, Lee and I said "I do"...although sometimes it seems like it should be eighteen years :) I mean that in a completely good way.....I hardly remember what it was like to not be married to him. God blessed me with an amazing man and I'm so thankful for him. I was reading back in my prayer journals from when I first met Lee and I prayed so many times, "dear Lord, please let Lee call me"...I remember seeing him for the first time when he picked me up for our blind date (which I wasn't not excited about, how many blind dates work out?!). When he came to the door, I immediately thought, I think I'm gonna like this guy and I did.
It's fun to think back to that time in our lives and how I love him even more today than I did on our wedding day. I kind of laugh when I look at this picture and see how in my mind I know I was planning our future, how I wanted it to look, how I thought it would look....but God had other plans, and His plans are better. When I look back over the last eight years, this journey has not been easy. But God has protected our marriage through all the ups and downs, and it has had many opportunities to be attacked....I would never want to go through any of these eight years without Lee by my side. He is a Godly man, a great father and devoted husband....if you know him, you know that he really is just that great. He is the best person for me. This is the verse inscribed on his wedding band and I continue to pray this.... " I thank my God every time I remember you. In all my prayers for all of you, I always pray with joybecause of your partnership in the gospel from the first day until now,being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Philippians 1:3-5
Happy Anniversary Lee, I love you!
Also wanted to share about our visit to Tallahassee this weekend where Lee's family lives. We had not been able to go visit with all MG has been through, but now was perfect timing. The best part was getting to go to the Sheppard's church on Sunday and bringing Mary Graham with us. How do I begin to thank this church and all the precious people I was able to meet, many for the first time, who have been so devoted to praying for her. I had so many come up to us and just tell me they have been praying, praying everyday for Mary Graham. When people don't know what to do or say to us right now, just telling me that you are praying is more than enough. We thank each of you for taking the time to pray for MG and God hears yours prayers and I believe he is going to do great things, He already has. Thank you for standing in the gap for us when we haven't know what to pray or even how to pray. I just read the verse in Luke on our way home, "Jesus spoke a parable to them, that men always ought to pray and not lose heart." It is easy to lose heart, so please do not cease praying. God is greater than all of our circumstances. We are honored and grateful for your love for us.
"Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart." Hebrews 12
So, summer began for us over two weeks ago and it has been kind of crazy......without boring you with the details, every child has been to the doctor, some more than once and ended with MG throwing up all over the waiting room floor of the after hours clinic. But, everyone seems to be on the mend and we have actually had some fun this last week. It was quite a slap in the face way to "ease" into summer with three kids home for three months. (I know some of you mommas can relate). Right before it all began I was thinking about true daily living as I looked at my calendar full of things to do this summer. My prayer is that I will live each day, enjoy each day, or rest in the fact that God will grant me grace to get through the harder days. Well, week one was quite the test :) This week then began with me getting the stomach bug, yay...hoping our sick days are behind us now for a few months.
MG was having a great deal of right leg and hip pain, mainly after being examined by the doctor for a possible UTI. However, after seeing the orthopedist, having xrays, and talking with the folks at CHOP about a possible MRI, CT, etc (maybe in Philly) she has actually gotten much better and her pain has improved. In fact, I feel like the last two weeks she has been happier than she ever has been.....I'm SO thankful, we did not want to do more scans right now, we did not want to go up to Philly right now, and we did not want her to be in pain....so we have just prayed for the pain to get better, and it has. We praise God that none of this has to occur right now and we are praying she continues to improve up until we go at the end of July to CHOP for her first expansion surgery. She has gotten stronger and is sitting up unassisted for longer periods of time. We are so thankful, that despite these setbacks, she is making some progress since her surgery. I have some video of her I will post soon.
I confess over the last month of letting everything sink in from what our neurologist told us, I have been researching and researching. Trying to figure out things on my own...trying to have the control. But where has that left me, fearful and sometimes hopeless. Loftin said to me the other day, "Mommy, it's really hard to believe in God because I can't see him...how can He be real?" (Talk about a loaded question)......I just looked at him and said "I know, it is hard." That's not all I said, but I could relate to his little 6 year old mind. He wants to see what he is believing, don't we all? He also confessed to me this month "I really think I love Star Wars more than God" and his face showed that he wasn't even sure he should have said that outloud. I told him that God loves him much more than Star Wars and left it at that. Again, I was reminded that I have no control over any of my children, really only God does. Although Lee and I laughed and thought maybe we should cut back on the star wars :) But honestly, it was a good moment for me to surrender this control over to Him. I love that Loftin is asking these questions, thinking more deeply about our Lord and challenging me to think more deeply also. My prayer has always been that my children would grow to love the Lord. But, I must surrender every day these children that He has given us to love and raise and train and grow the best we can....and then surrender again and again.
The verse above has followed me around the last few years, especially while pregnant with MG, God showed it to me so many times and I had written it down several times too. Looking back, there is so much God was revealing to me during that time, preparing me, that I am just now realizing and I hope to share someday. But the words "for the joy" have always been my favorite. Jesus knew he would endure the cross, but he did it anyway...for us....for the joy set before him. And that joy, I believe, belongs to us too. Especially on the days when I am sad, fearful, weary, losing heart about the future, God brings me back to that joy. The joy that there is nothing in this world for me, the joy that our only hope is in Christ, and the joy that we don't even know about yet. He is the one that is the author and perfecter of our faith, just as I see him beginning to work in little Loftin's heart, He is chiseling away at mine too.....sometimes more than I wish. But, although painful, I know it is good. Especially in a world where so many are suffering, and I have seen it more and more around me these days.....God is at work.
Thank you for continuing to pray for MG and our family....please pray for her growth and development, for her upcoming surgery in July, for us as we wait for more tests results and learning more about her muscular dystrophy. Pray also for daily surrender. Happy Summer!
We heard a couple weeks ago from the neurologist....based on her muscle biopsy results, Mary Graham has a congenital myopathy, in other words, a muscular disease or type of muscular dystrophy. The doctor is uncertain at this time which specific kind, but is looking into a few very rare ones, and is waiting to do another test on the biopsy and then possibly a genetic blood test. These diseases are usually progressive, can be mild to severe, with progressive muscle weakness, loss of respiratory function, delays, and there is no cure. We are very saddened by this news, however, deep down have thought that this could be a possibility for her. Just when we thought we had a plan for her, this makes things much more difficult. It often is also hard to get a definitive diagnosis, and may take months before we know more specifics.
Please pray for us as we wait....pray for a hopeful diagnosis, a milder disease that doesn't progress quickly. The doctor said every child is different, even with similar diseases and sometimes you never know, it's a wait and see. Talk about just living for today? I have seen this past year God's grace poured out daily. Lee and I were saying how we don't know how we could handle this kind of news a year ago, but God has prepared us, never forsaking us every step and granting us strength and endurance when we have heard bad news, this probably being some of the hardest to swallow. God is very close to the brokenhearted and I know He is close right now. But, hearing from the neurologist last week, my faith has been shaken, tested greater than ever, I have questioned everything..... I thought of the mustard seed. That very day Loftin brought home a tiny mustard seed on an index card from school. Have you seen one? I never had, they are tiny. I looked at it and thought, "yep, that's about right." But God says that even faith that small can move mountains. He wants our complete dependence on Him. This is no surprise to Him, He's still in control. We continue to trust that God can move mountains, He can do immeasurably more than we can ask or imagine, and trust that this truly is His best for Mary Graham and our family, even if we don't understand. Although I believe in each of these truths about God, it is hard for my heart to catch up with my mind. I would never have chosen this for my child....please pray that God will use this for His glory. She is already such a joy to be around, she is a light with all this darkness, and I pray that she will be a light for Jesus and continue to point others towards Him. She is a blessing....God made her perfectly...and we love her exactly the way He made her. Looking at her helps wash away the fears of tomorrow, but they still linger.
We praise Him for how well she is doing now, for the surgeries she has come through and recovered and seems to be getting stronger. MG is really feeling good, so happy, eating well, seems to be growing and her little spirit doesn't seem nearly as afraid anymore. She had gained two pounds and grown two inches since the end of February. The doctor said we are doing everything we can right now to help her, with her therapy, veptrs and our team of doctors, and we will continue down this path.
Your prayers and faithfulness have brought her and our family through so much this year, thank you. Please continue to pray for Mary Graham, for her growth, development, and healing.
He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” Matthew 17:20-21
