One year ago....

 When the Lord restored the fortunes of Zion,
    we were like those who dreamed.
Our mouths were filled with laughter,
    our tongues with songs of joy.
Then it was said among the nations,
    “The Lord has done great things for them.”
³ The Lord has done great things for us,
    and we are filled with joy.
⁴ Restore our fortunes, Lord,
    like streams in the Negev.
⁵ Those who sow with tears
    will reap with songs of joy.
⁶ Those who go out weeping,
    carrying seed to sow,
will return with songs of joy,
    carrying sheaves with them." Psalm 126



one year ago

  This Psalm has been all throughout the Advent journal our church gave out at the beginning of Advent season. As a new year has begun, like many, I have been thinking about this past year and all that we have been through with Mary Graham...I remember dreading many parts of it....some of the hardest moments have come this year....her many unexpected days in the hospital, complications with her surgery, her infections, the night she stopped breathing in the ICU, the day we found out her diagnosis of muscular dystrophy...we have shed many tears for her. My heart has been heavy lately reflecting on MG and maybe because of all the suffering around us....you don't have to look far to see it.  I look back and have thought 'thank goodness 2012 is over, don't want to do that one again'....but then I also see so much more than just the heartache and tears. God says where there is much weeping there will be much joy...and I believe this fully. In fact, pain and joy go together. It seems like I'm always fighting to run away from suffering, hurting, discomfort...anything that is the opposite of happiness....the list goes on.  At times I believe if we can just push through this trial, then we will be happy and can finally move on planning our "normal" life. God has given us a different "normal" than we were expecting....but He has given unexpected happiness and joy too.

I would be lying if I said I didn't pray everyday that God would take this disease away from Mary Graham. Especially as I look around and see healthy children running around and I ask God "why her?" "why us?" To think of all she could do, all the heartache and pain she (and we) wouldn't have to experience.....but then, we wouldn't have been able to experience deep joy either....like I said above, they come together. It's a battle everyday of this pain and joy. For instance, Loftin and Lucy are somewhat oblivious to her "differences." Loftin just asked Lee the other night for the first time if Mary Graham would ever walk and Lee said we didn't know, but we pray everyday that she will. Loftin said, "I just love MG so much I can't stand it." Then Lucy today said, "Mary Graham will learn to walk when she gets bigger, and if she doesn't I can just carry her." And when I see her in her zipzac chair...it makes me so happy for her, but still stings at the same time. I could go on and on about moments like these.

A friend said it best, "If you keep your eyes (and your heart) open, a life rich with trials may be equally rich with happiness."

We feel richly blessed. So, even through some very dark days this last year, the joy that God has shown us through her and our family circumstances has been beautiful. I would not trade all that God has shown me or taught me through her. And she is a joy herself. The joy that comes after pain is restoring us as the verse says above. God is restoring us. Each day. Each new year.



Now, on to a medical update on MG....She is still battling fevers....we had a little scare right before Christmas when we went for a follow up with her pulmonologist. She started running fever that day and her bloodwork that day showed all her levels (white count, imflammatory markers) were way up....meaning the infection could be trying to return, despite her still being on strong antibiotics. Her labs came back down this week, until yesterday...she spiked 103 and her labs are back up high. The doctors have said they believe the antibiotics may only be supressing the infection as these rod infections are so difficult to get rid of. And its very unusual to have such high white blood count and no other symptoms....so it leads them to think the infection is still there. And she will be doing so great and then out of nowhere start running fever and act like she's hurting. If it does return, removing the rod will probably be the next step. We ask for your prayers that God would intervene and rid her of this infection so we do not have to remove one of the rods and start over. The doctors are amazed at how greatly her lung volume has increased since her veptr rods were placed. But, on the other hand, we are so tired of dealing with this infection, the long period of antibiotics and just want her to feel 100%....so if that means taking out the rod, then that is what must be done so she can finally move past this infection. Please pray as we and our doctors make decisions about what to do next. She is scheduled for an expansion Feb. 5th, but I have a feeling that is not going to be the plan.



Another issue MG is continuing to have is weight gain, her weight has plateaued over the last several months and she is very thin around her back and chest (which is where she needs some extra skin to cover her rods). She can't quite get over 17 lbs. And recently she has developed a cough, different than an upper respiratory cough, which has led to her vomitting about every other day for the past several weeks....and we think this is all related to GI issues, possibly reflux. So, she is now on some reflux medicine and I think its actually helping. Because she is two months past needed an expansion, her curve in her spine is worsening and this affects her stomach-everything is connected. Hopefully, her expansion will help this too. We are scheduled to see a GI doctor in the next week to discuss this and also the talk of a G-tube....the doctors are still throwing this around and it was time to get GI on board. We are praying that she can eat and gain the weight she needs to still avoid a G-tube.




Today...and she is still smiling after all she's been through

  God is not surprised by any of these "bumps in the road." Please continue to pray for her and her upcoming surgery and the infection and other issues she is facing. Please also continue to pray for her progress and development....she has made progress and seems to be gaining strength, but we pray that she keeps getting stronger and may one day be able to be more mobile on her own.

Hope each of you had a Merry Christmas and Happy New Year. The kids got lots of fun things from Santa...my least favorite thing we got for Christmas was the stomach bug...everyone of us, except MG (thankfully) has had it. I think we have spent more time in our pjs than regular clothes. Despite the sickness, between throwing up, we have had some good family time. And Mary Graham has been doing so great in between her fevers. Her personality has been so cute lately.

Thank you always for praying for MG and us as we venture into the next step in this journey-whatever that may be.