The Mustard Seed

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

Prayers and Pain Meds

Mary Graham has had a great last couple days.....I believe getting back on her pain meds more consistently and prayers have gotten her over the hump. She seems to be more like herself, babbling lots, eating great and smiling all the time....praise God for how far she has come. We are just continuing to monitor her hip pain and hope everything just needs more time to heal. Feels good to be doing more normal things and that her sweet spirit is coming through. So grateful for your prayers!

Life and Easter

Lots of baseball, choir programs, school parties, Easter egg hunts and trying to get a good family picture.....that's what's been going on in our life the last couple weeks as we are trying to adjust back to normal life. Mary Graham seems to be slowly improving - overall I know she is feeling better......although the last several days have been rough. She is still battling pain and we became concerned about pain in her hips... just touching them in a certain spots makes her scream. Physical therapy has been rough - yesterday she cried throughout the whole thing. So, the orthopedist wanted her to be seen (thankfully we are able to go see our doctor in Birmingham and not Philly) and we went today for xrays. Her hips are still in the sockets and her veptrs appear to be in the same position they were right after placement, thank goodness. The doctor explained the pain could be one of two things, either post op pain due to swelling around her hips because the veptrs are hooked to her pelvis, or because of the great amount of pressure the veptr rods are putting on her pelvis and hips. He said the latter could be worrisome, in that it could be shifting her pelvis so much and affecting those muscles in her hips. So, they want me to continue pain meds around the clock and see how the next two weeks go, also trying her on her tummy (most likely when she's asleep, so she's the most limp) to see how painful it is on her hips when/if they can be straightened. Which may be hard for me to decipher because she has never been able to tolerate her tummy because of weakness and her scoliosis and hips, so we shall see. If the pain continues, it could mean adjusting the position of the veptrs or another surgery. So please pray that this is still part of her healing and that we see improvments over the next few weeks. If you don't quite understand all that I just explained, just know that I don't really either....I have to always get the nurse to explain it over and over again to me.

Despite all of this, she is still giving us some smiles and is content, moving her seems to be what causes the most pain, and that's completely understandable! Also, another concern of mine has been how her little spirit is so afraid now. I mentioned earlier how in the hospital she truly would lose it when anyone even walked into the room. She has become so very aware of what's going on around her. She is great to smile and wave to others from afar, especially if she's in my arms, but when someone comes too close or tries to hold her, it's just too overwelming and she loses it. So, of course the orthopedist visit today was miserable and she has yet to warm back up to our sweet therapists. As a one year old, I know separation is normal, but I also believe all she has been through has affected her so much and I just pray for her fears to be calmed. It's hard for me to imagine all the times we will go back for surgeries and doctor appointments and for her little spirit to be shaken so much each time.

We are so thankful for how far she has come and know she still needs time to heal. Reading back over the posts from this last month, we have so much to praise God for....one huge praise is that her appetite has dramatically improved...she is eating everything I put in front of her. The doctor had said this might improve after the veptrs, but I just can't believe how much-so glad for this and that she is gaining weight.

Some days have been hard and I worry about her development and the longevity of all this, what her future holds...what mama wouldn't? A friend reminded me of the joy and sorrow that is intertwined together in this life, as it was on the cross. It gets hard to lay these things at the foot of the cross, to keep looking up, especially when I have a baby clinging to me :) I'm sure some of you can relate...

I read an update from a friend whose little boy has been sick in the hospital for three months now....what she wrote moved me, "On Easter, as I think about an empty tomb, I am reminded that things are not always what they appear and that God has plans bigger than us."



Lord, thank you for the empty tomb.

Before and After

This was a picture of Mary Graham's back and spine right before her surgery on March 13th. Then below is a picture of her xray before her surgery and then one after with her veptr rods.

 It is truly amazing that these rods are inside MG now. The main improvement has been that the rods were able to lift her ribs up and now her diaphram and lungs have more room to breath. It has been almost three weeks since the surgery and she is doing really well. She is still battling pain and her incisions have a ways to go, but she has definitely improved. Although she is very needy (wants to be held most of the time-which makes life interesting), I'm hoping this will get better over the next month as she continues to heal. We will start back physical therapy 3 days a week tomorrow, Please pray for her pain and development of her back and spine, but also her hips that we are still praying are developing properly since that surgery in December. She has lost some of the skills, like sitting up, and will have to work hard to adjust to her new body and work through the pain. It's all part of the process. 

Here are some recent pictures below and I believe she will continue to get better, we continue to be thankful for God's hand in everything, as these days have not been easy. Her progress is truly a miracle to me, to see how far she has come, and your prayers are such a part of this miracle.

Thank you, always, for your prayers!



Home and Spring

It is so good to be home! Everything is just better when you are home. Our sweet neighbors decorated our porch to welcome us. Our traveling went very smoothly, had a long layover in Detroit, but Mary Graham really did well (valium probably helped :), except for about the last 20 minutes of our last flight into Birmingham and i'm not surprised because of the lady in front of us was throwing up (very loudly) the entire desent...thought I was going to die, although it's pretty funny now. Loftin and Lucy and my parents met us at the airport and it was so great to see them all, and the realization of all we had been through alone, without family and friends near us, hit me hard. But, thank goodness for texting, email, and internet....your messages made us feel like we weren't so far away. And we were truly forced to depend on God completely, for He had so much to teach us about trust and still is.

Mary Graham is doing pretty well, she is up and down and really wants me holding her much of the time-she cries when she's put down. Kind of like having a newborn again :) I believe all that she went through was very traumatizing and will take time for her to heal, both physically and mentally. Although, I know many have said that she will not remember any of this, she still knows. She is and was very aware of it all. God can heal those wounds too though. She has smiled a little more, given us a few laughs and I know she will only continue to improve. Her incisions are looking better, and part of her back blistered up (which is normal they said) and it is starting to heal also. Thank you for continuing to pray for her healing.

Also, when we left Birmingham, it was Winter and now it's Spring and everything has bloomed-it was beautiful driving to our house from the airport and reminded me of the song, "Every Season" by Nicole Nordeman and she compares winter to the harder seasons in our life, how God is in every season, teaching us, growing us until we are ready for the next season. And there will always be a new season.
And then the end of the song....
 And what was frozen through is newly purposed, turning all things green, And so it is with You and how you make me new with every season's change, And so it will be as you are recreating me...summer, autumn, winter, spring.

The harder seasons make the new ones much more beautiful.

http://www.youtube.com/watch?v=r-JgsOMiqCs

Is this all worth it?

I have asked the above question in the middle of lots of very low and scary moments with Mary Graham's recovery these last couple weeks. Lee and I were talking about all the steps we took to bring us here over this last year and both agreed that everything has been so clear that led us to Dr. Campbell and CHOP and I know for certain that this is where God has needed us to be to help Mary Graham. Lee, being the Seinfeld fan that he is, said he kept thinking about the episode where Putty is wearing the 8 ball jacket and says, "All signs point to yes!" God can even speak to us through Seinfeld :).... but he has just felt a peace that all our signs pointed to "yes"....meaning this IS where we need to be. All these details have been covered in prayer and He has made our steps firm. We have learned over this last year that MG's scoliosis is one that is progressive and stiff, it would not get better, just worse and her lung quality, already starting to diminish, would worsen with time. These veptr rods have opened up her ribs, giving her lungs room to grow, more room to breathe. And, they have inadvertently straightened her spine some. It is a long road ahead, with expansions and rod replacement surgeries in the years to come. But we praise God for leading us here, the place where we could give MG a much better quality of life.

These last two weeks have been long and hard, many times extremely scary for us and Mary Graham. Looking at her scars for the first time was hard to see, but they will heal and fade. Just like trials in our lives - they may leave scars, but God heals and what's left is a reminder of His love and grace. God has been faithful to lead us through all of this and it reminds me of the verse in Isaiah 43, "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze."
When. A word that says we will have trials, but how sweet our Savior is that He will never leave us.
God has opened my eyes to great pain and suffering all around us, and I have seen so much brokeness and a world that truly needs a Savior. I have met families who have a child that has spent months in the hospital, some even years. Everyone has a story. But, as hard as it is to see all this and experience our own pain, I have a renewed since of hope, so much more deeply thankful for our Lord and the blessings he has poured out on us. Blessings that are seen more brightly after these dark days.

I was thinking back to when I gave birth to Mary Graham one year ago, I loved her immediately, she was perfect and she was mine. Then when MG was just a few weeks old we began to notice her back, her hips and muscles, some of the things about her didn't seem quite right....I grieved after all the initial doctor visits...but I still loved her and she still was mine. God has shown me His love for me and Lee, for our family and for Mary Graham. As a parent we are able to get a glimpse of how God sees us.....broken and sinful. But he looks at me and still says, she's mine. He loves us no matter what. It's a beautiful picture of His grace and love. And above all the positive results of her veptr implant surgery, getting to experience this grace and love has made it all worth it.

The best news of the week...we are getting discharged today and flying home tomorrow! I am forever grateful for your prayers through all of this. Please continue to pray for MG over the next several weeks as she continues to heal and handle her pain. Pray for no complications or infection and for her spine and ribs to continue to grow and her lungs to develop. As we have been told, the spine is often hard to predict-but so is everything in life I have come to realize. We will return July 24th for her first expansion surgery - we have been reassured many times that this is nothing like the implant surgery, hopefully just a couple nights in the hospital. But we will not look that far ahead just yet. Pray for our transition back to real life and I look forward to thanking many of you face to face for your faithfulness to pray.

The song that has been in my mind, one of Lucy's favorites, seems to sum it up perfectly....
Praise God from whom all blessings flow
Praise Him all creatures here below
Praise Him above the heavenly hosts
Praise Father, Son and Holy Ghost.....Amen.

Just waiting

Today we are just waiting on Mary Graham to start drinking, she has eaten pretty well, but the doctors really want her to drink and she is refusing formula, pediasure, applejuice....we've tried it all. Her stomach has been the main issue, still been pretty upset since last night, but hoping it's settling some more now. So, they have still been giving her fluid off and on and everytime they hook her back up via IV that keeps us here longer.

Dr. Campbell said it's three-fold that determines when she gets discharged....pain management, nutrition, and stability. We feel her pain is managed, she's only on tylenol and motrin, they were worried the heavier meds were attributing to her stomach issues. Her stability is pretty good and she's getting more comfortable being moved around, still weak though. So, nutrition is the key. Please pray for her to drink and eat better over the next 24 hours. We are still in ICU and may never make it to the floor. Hoping that we can possibly be discharged late tomorrow if she does well. She is still giving us some smiles, that's so good to see. We are growing a little weary, but so thankful she has come so far. One friend emailed us and said she is praying us home....looking forward to that day.