Prayers

MG continued to get worse today, more fever and was working hard to breathe. So we came to the ER this afternoon and have been admitted to Children's. The doctors believe it is a virus, possibly RSV. But she is requiring oxygen for support. Since she has the scoliosis and MD it is harder for her to fight off these viruses. We don't think her rods are infected at this point. She is doing ok, miserable and sick. 

Please pray for great improvements over the next 24 hours. We appreciate your prayers so much.

Broken Record

Mary Graham has been sick since Sunday with high fever, cough, and congestion...she has been pitiful. We were at Children's all morning yesterday, had xrays, labs, and saw our pulmonologist. She definitely has a nasty virus, but the jury is still out on whether her rods are still infected....her bloodwork was a little misleading. As our doctor put it, "its never simple with MG." Her wbc was normal, but the inflammatory markers were very high. So, the plan is to just see how she does the next couple days and see if her fevers remain or if she gets better and it is truly all from this virus. Like she has in the past, she will let us know if the rod infection is back.

Also, he is very concerned with her weight and growth, she has even lost some weight. It's so up and down with her appetite, because when she's sick or on antibiotics or fighting the rod infection (which seems like is all the time) she doesn't want to eat. Getting her to eat each day is a battle, and this week has been particularly hard with her being sick. Her rods on her back are more noticeable under her skin than they ever have been and we do not want the skin to break down. We are still waiting to see GI and she has been put on Cyproheptadine, an antihistamine that is suppose to increase appetite. It's only been two days, so we will see. We have seen tons of nutritionists and are trying all the things to try and put calories in her food...I even put heavy cream in her milk. Since MG is not a typical 23 month old, she needs to have more fat on her body for everything she goes through, and right now she is very thin.

So, it seems like it's just one thing on top of another lately with her. I feel like a broken record asking for prayers for healing of the rod infection and for her to grow and thrive.....and I know these requests seem insignificant in the big scheme of things. But I also know God hears the prayers of his people, no matter how big or small. Thank you for being faithful to pray for her.

Nevermind

No MRI today...got to hospital early and after seeing Dr. Makris, decided since MG is not showing signs of infection yet, he didn't want to put her under anesthesia and all that's involved for the MRI when it most likely would show nothing. I agree completely with this decision. It took 3 weeks for her to show infections signs last time we took her off antibiotics, it's only been 4 days. If she starts running fever we will go back in and do it then. Until then we just wait and watch.

So, it is a pain to plan for these procedures and get "psyched" up for them....but she's feeling great and no anesthesia and waiting for today....so I will take it.

Thanks for faithfully praying....I will keep you posted on how she's doing.

MRI

Mary Graham will have her MRI first thing in the morning....please pray for smooth procedure, the anesthesia, the results and all that may follow. Thanks so much!

A New Plan

So after posting Sunday night, by 8:00 Monday morning our pulmonologist had already talked with Dr. Campbell and come up with a plan for Mary Graham. Talk about some prayers being answered for the doctors to get moving and make a plan. I even dreamed Sunday night that Dr. Campbell called Monday morning, said to come on up to Philly, took out one of her rods and we were back in Birmingham by noon....ah, if only it were that easy :)

Here's the plan....we have gone ahead and stopped her antibiotics for now and are watching to see how she responds, so far she's been ok, no fever today or yesterday. I feel like I'm watching everythings she does so closely, like a ticking time bomb. They are scheduling an MRI and possibly an ultrasound for this Thursday or Friday at Children's in Bham. So, depending on what they see (which may be nothing, because some of the bacteria may be too small to see on MRI) and depending on how she presents over the next week or so (fevers, pain) then we will know for sure if the rod needs to come out and we will schedule to go up to CHOP for surgery...most likely they will just take out the left rod. I think she would then heal a few months and then back again to reimplant the rod. This will be tough on her little body.

Or, maybe she will be just fine off her antibiotics and the infection won't come back. God can rid her of this and we definitely pray for that, but so far it is still pointing towards there being an infection. So, whatever the end result we pray God will be with us, guide us and the doctors and get MG feeling better.

Only God knows what the next few weeks may hold...please pray for all the details to work out, even logistically with travelling and kids, flying off to Philly at the spur of the moment can be difficult. But I have seen God work in the tiniest details and trust that He will do the same this time.

Thanks so much for your prayers!

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.

 



One more thing

I have had some people telling me they are already running the marathon or the half marathon and would like to wear a bell center shirt.....so, if you are already planning to run the Mercedes Marathon and would like to wear a Bell Center shirt with Mary Graham's picture on it you can go to this website and join "Team Bell Center" and you will be able to support the Bell Center and Mary Graham without being responsible for the fundraising, but it still gives support and raises awareness for The Bell Center.

Here is the link....
https://www.imathlete.com/events/EventOverview.aspx?fEID=13722


Email me with questions jennifercsheppard@hotmail.com

Thanks again!!