Making progress

"You, O Lord, keep my lamp burning, my God turns my darkness into light." Psalm 18:28

Wanted to share some pics around our house this week....we are very glad to be home....and home is just about the only place I have been :) But that's ok, I'll break out one of these days.  We have had lots of smiles in between the craziness...Lucy has been sick, our dog had a stroke, MG is still throwing up (often after she has had a lot to eat and coughs too much), and Loftin has been having dreams that I'm leaving and not coming back...bless him. But today we are all turning a corner has been the best day yet...MG is getting better each day, she is still requiring breathing treatments and oxygen around the clock (although we are slowly going down on the amount she needs), and overall she just feels better. She is playing and eating much better, but gets very tired and is napping a lot during the day. This RSV stuff is no joke and anytime these unplanned hospital stays come, it affects our whole family. I am most thankful for God's abounding grace during these times and I know there are brighter days ahead.

God teaches us so much through our struggles with MG.....he also shows me how blessed we truly are. You gain lots of perspective when surrounded by this medical world we now live in... knowing that though this is really hard at times, it could be worse. God tells us to never be surprised by our sufferings. That verse above I read the other day and love that it says he "keeps our lamp burning." I would have blown mine out a while ago....but thankfully He never stops.

We praise Him for healing MG thus far and ask for more prayers of continued healing and protection from other illnesses and for still no rod infection to arise. Her expansion surgery has been moved to Feb. 26th at CHOP, so her lungs can completely heal from the RSV and she is also scheduled get a G-tube then. We are not super excited about that, but she needs to gain weight and have more reserve when she gets sick and be stronger with all the surgeries in her future. So that's the plan....stayed tuned. We are always so grateful for your faithfulness to pray.

Sheppard Hospital

We have made it home and are very thankful. It is a bit overwelming with all the equipment and just learning how to do the oxygen and breathing treatments and all.....we just brought the hospital to our house.

Please pray for a smooth night and for God to continue healing Mary Graham and for us as we deal with all the "things" to help her get better. Pray for this transition and for us to not be fearful. And just for me and Lee to have confidence in taking care of her at home. She is already sound asleep.

We appreciate the prayers so much!

Home maybe?

MG had a better night and is still requiring oxygen, but her lungs sound much better this afternoon and we are down to three breathing treatments a day. Just now the doctor asked if we would like to try and go home tonight....absolutely!! This means going home on oxygen and with breathing treatments...as it could take another week to wean her from the oxygen. But we are up for it and everyone agrees that we are tired and she will do even better if she's home.

We have to get all our equipment and be trained on it, so it could take a while before we get outta here.

Praise God for bringing her to this point and I know He will continue to heal her. We are postponing surgery until about four weeks from now in Philly so she is completely well for that.

Thank you all so much for praying for her and us, please pray for our transition home, continued healing and confidence in our ability to care for her until she is off the O2.....my next update will hopefully a come from home :)

A glimmer

Today we have begun to see a glimmer of improvement in MG....she is still on the same oxygen levels, and having some fever, but overall she just looks better and doctors say her lungs sound a little better too. She has played and talked more this morning and even eaten some tater tots :). Since she loves to take medicine from a syringe, we have been giving her juice with one of those and she is beginning to drink a little more.

Also, they confirmed this morning that she does in fact have RSV, so that helps us make a better decision about holding off on antibiotics for now and know that this virus takes a long time to run its course, especially in a baby with compromised lungs and weak muscles.

I mentioned last night about how her bloodwork had risen some yesterday and they will check it tomorrow again...please pray it doesn't rise again, just as she is beginning to get over the RSV that could also be a sign that the rod infection is returning. I have been talking with the nurse at CHOP about the plans for MG and her expansion in a couple weeks, pray for God to work all the details of this out, as He always does.

We have a renewed sense of hope today (and a little clearer mind since I slept some last night) but still a ways to go. Your prayers are being heard and I have been thinking about the verse below. It is so hard to trust in the unseen, especially during these trying times, but I know and believe He is with us and moving and working every second in ways we can not understand or comprehend. And I trust that these things that are unseen are much better than the seen. God promises that to us.

Thank you for lifting us up and praying for MG's healing.

"So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal."

2 Corinthians 4:18

Still here...

Last night MG seemed more irritable and uncomfortable, especially during treatments and continues to run fever. However, her oxygen levels have remained pretty good on low levels. She's still been up and down today. She will start to make little appearances of feeling better and then just weak and tired and not eating very much.  We got a couple different opinions today from two doctors, one said she thought her lungs sounded better and we could cut her breathing treatments to "as needed" and then two hours later another doctor said she thought MG's lungs sounded worse and wanted her back on the treatments every three hours. Ugh....so I know she needs the treatments, but was getting hopeful that she was improving faster.

Then later this afternoon, she was still running fever and they did bloodwork and chest xray. The xray looked about the same, but her wbc and inflammatory markers had risen. So they believe she is borderline in having a bacteria infection that would require antibiotics. But here's where it gets complicated.....the antibiotics would also treat her staph rod infection IF it is still trying to return. And we don't want to mask that infection, because we need to know if it's still there. Basically the doctors said it is up to us, our decision. So, I think we are going to wait until tomorrow and see how she is and then make a decision.

Please pray for us and the doctors to come up with the best treatment plan for MG and for God to just go before us. All of MG's issues make things more difficult and complicated and with expansion surgery two weeks away (which she needs) it's just a lot to try and comprehend and make wise choices for her. We are exhausted and Lee is actually staying tonight at the hospital....after last night I was just about to hit a wall. After a long night, a lab tech came in at 5:00 am, flipped on the lights and woke her up to draw labs (which took three sticks). After that I told her nurse that no one else can come in for the next 3-4 hours, no one needs to check her vitals or anything...she needed to sleep. So, Lee said it was definitely time for me to take a break :)

We covet your prayers for all the things mentioned above...healing, wisdom about treatment, and strength and endurance for all of us. I'm just ready for my baby to feel better.

Taking her time

Mary Graham is slowing starting to show some improvements today. She had an okay night and a rough morning, but they were able to go down on her oxygen a little...so we are making some progress towards weaning. Her lungs are sounding a bit better and she is still getting breathing treatments every three hours and after the treatment they use a percussor on her chest (aka " the jackhammer") to break up secretions in her lungs. So, it was super fun waking up every three hours to that loud sound. But the craziest thing is that she actually LIKES the percussor. So at least she isn't crying during the treatment and they are helping her improve. This afternoon she is doing better and has played a little. They want her to be completely off oxygen for a while, especially while sleeping and eating and drinking better. So those are our prayer requests. She is taking her time getting better and that's ok, even though we are growing weary. They aren't talking yet about when we might go home, we want to completely comfortable taking her home, so we are in no rush. Pray for strength and endurance for all of us. Lee and were suppose to be at Ross Bridge resort tonight....alone....with no kids....ahhh, would have been nice :). Your prayers are helping and God is healing her from this virus, we are so grateful!

Update on MG

Mary Graham had a pretty rough night and morning, had to go up on her oxygen and just coughing a lot. The day has been up and down, but we do not believe she has gotten any worse, so we are thankful for that. Her viral panel came back negative, but is still growing and they may see something in two more days. Many viruses look just like RSV, and the doctors believe it is still viral and not bacteria, just probably one that they aren't able to test for. Only time will tell and these viruses take time to run their course. She is also responding well to albuterol breathing treatments every three hours, although she hates them. She is sleeping really soundly now and I know she is just where she needs to be. Yesterday I had prayed all day that God would give me discernment about her illness and when/if I needed to take her in to the doctor and I believe that God nudged me yesterday to take her to the ER when she wasn't looking good or breathing well and I had been worrying all day. And I'm so thankful that I did. And we are always so thankful to our family and friends that jump in to help a moments notice...don't think Loftin or Lucy missed us at all as they had a fabulous afternoon playing in the snow with their friends :) Please continue to pray for improvements and healing of the virus. Also, please continue to pray that her rod infection doesn't return as we are now two weeks out from the expansion surgery. Wouldn't it be great if she got over this bump, had no signs of rod infection and we went ahead the expansion? God is going before us no matter what and He gave me a sweet reminder of his presence through this roller coaster of a ride last night is this verse from Genesis 35.....The Lord was leading Jacob from place to place, Jacob unsure of where he was being lead, while he was fearful of his brother Esau. But then he says, "then come, let us go up to Bethel, where I will build an altar to God, who answered me in the day of my distress and who has been wherever I have gone." So very thankful that God has "been wherever we have gone" even in the most fearful moments. Thank you for your prayers!

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!!