Seven, Disney, Norovirus and Jobs

Loftin turned 7 on March 16th (first day of Spring Break for us) and that morning, when the kids woke up, we had a big surprise for them....



surprise from Jennifer Sheppard on Vimeo.


Loftin has been asking almost everyday for two years, and now Lucy has joined in, when we were going to go to Disney and with all that has gone on with MG, we haven't been able to plan a trip. I told Loftin and Lucy one day you are going to wake up and we will say "we are going to Disney World!" So, literally about two months ago, sitting at Children's hospital when MG had RSV, Lee and I had the idea to plan a spring break trip. We managed to plan this surprise with Mary Graham's surgery pending and hoping and praying that she would be fully recovered, as it was only 3 weeks after her expansion and gtube surgery that we would be heading to Disney. With help from Bill Wingate, our neighbor and disney travel agent, we were able to plan a great trip. And of course Lucy started running 102 fever the night before and was sick most of the trip, but she hung in there. Motrin was our best friend and Mickey, Minnie and Cinderella seemed to help too :). It wouldn't be a Sheppard vacation without someone getting sick (aka "Sheppard Christmas 2012" when we all got the stomach bug-Lucy throwing up all the way to Tallahassee, me throwing up all the way home). After returning home from Disney we all (Lee and Loftin only briefly, me and Lucy are always the worst victims) got the same stomach/fever virus which I have now learned is the norovirus-have you heard of it? If so, you know it's terrible....run far away from anyone who has it. It's not like a typical stomach virus, it lingers for up to a week. So I'm still dealing with it and hoping to be at the end. I know this is what Lucy had at Disney, bless her, she rode all those rides....and now everyone in Disney World may have norovirus :(

MG got an ear infection and respiratory infection right when we returned home (but antibiotics can treat all of that, thank goodness). I really had my doubts back in January that we would make to this magicial place. But I prayed that God would allow us to get there and have an awesome family trip. I even had a few people praying that the trip would work out, you just never know with our family.

So, enough of our sickness woes......it was a wonderful trip and we can't wait to go back! Here are some pictures to show....

The famous Cinderella castle picture

Apparently when you turn 7, you have to be cool in pictures

MG's ride

Princess dinner

My kids favorite thing was getting autographs

Loftin got to be Sleeping Beauty's prince, he secretly loved it

Meeting characters at "Chef Mickey" breakfast
Look at MG's face....she loved them from afar, but when they got to close she would cry or try to get very small in her highchair 

Check out MG again

Aloha from the Polynesian

Disney World is exhausting, but she loved every minute of it

Dumbo, about the 5th time

Loftin kept saying, "I can't believe Walt Disney made all of this!"

Enjoying the pool

Remember, she is running 102 fever in most of these pics, you would never know it, she did have a few meltdowns, but I think everyone does at Disney World (no pictures of those)

My favorite, Tinkerbelle magically appeared in their hands when we got this picture :)

Loftin has seemed so much older to me lately...7 just seems big. I wanted to share his school journal from back in January. I believe God has grown each of us in different ways this year. The other night, he was sick and thought he might throw up (everything these days is related to stomach bugs, bleh) and he looked up at me and said, "mommy can we pray?" On one hand I almost laughed, as he was hanging over the toilet, but on the other hand, it was so moving....he was desperate and needed God and was asking for prayer. I teared up and we prayed right there on the bathroom floor. In this moment I knew that God was becoming more real to him. And so many days I feel I fall short as a mom, juggling all three of them with MG's disease, and God gently reminds me that He is taking care of each one of them, filling in all the gaps where I miss, and I miss so many, He's loving them perfectly.

Here is his sweet journal....it is the perfect way to describe our days...we eat donuts and deal with oxygen. Loftin has handled all the change over the last two years so wonderfully and that is only by the grace of God. Praise God for all his blessings in the midst of it all.

Another quick funny story....lately Loftin keeps saying, "mom you should get a job." And he is very serious about this. He said he doesn't want me sitting around all day getting bored. Really? Without jumping down his sweet little throat, I calmly said, "i have a great job, I take care of daddy, you and your sisters." Last night it came up again and I asked what kind of job they thought I should have and Lucy piped in, "you should be a taxi driver!" Have no idea where she got that. Then Loftin said, "I think you would be a good doctor." Well, little do they know most moms are both of those things....driving kids around all day and being their doctor when they are sick (I guess for me a little more with all of MG's issues). In fact, I may open my own clinic... now that I have all this equipment I can start seeing other patients in my home :)

We are hoping a praying for good, calm (yeah right?) smooth,  healthy months ahead. Mary Graham's next surgery in Philly is Aug 6th. And we will get to see the wonderful neurologist at CHOP at that time to as we are doing more genetic testing these next few weeks. Since she has had the gtube, she has gained one pound in just a month-this is huge! But, since she's been sick she's not tolerating her feeds at night and keeps throwing up in the middle of the night. Not sure if she had the norovirus too. Please pray this resolved, as she has lost some of that weight she just put on. Just don't want more new "issues" with her.

I am planning to change things up a little on my blog....adding more of our entire family "stuff" rather than just MG medical updates, although I will still be doing those of course and putting those on the caring bridge site too. I pulled out all my scrapbooking stuff the other day, laid it all over my den floor and looked at it and thought, "I really hate scrapbooking." So much easier to write and add pics on my blog to remember fun memories about the kids.

We are always grateful for your prayers for MG and our family.

Two

Mary Graham turned two last week and we had fun celebrating...many mixed emotions on her birthday for us, but very thankful and blessed.

We sang (I just love this of Loftin)

Ate cupcakes

Tried to get a picture with her "friends"

She got a new ride



And smiled for a pic....you are wonderfully and fearfully made MG

 Here is a video if you haven't seen it of The Bell Center, this was created by the Birmingham Service Guild (they do so much for the Bell Center) and was played at their annual Gala. MG and her classmates are in it....you can truly see how special this place is.      http://plainview.wistia.com/medias/oj815y6d4l

The Rest of the Story...

"The Lord will fight for you, you need only to be still." Exodus 14:14

We flew back Friday night and had safe travel....MG is doing really well, she is only on motrin and slept good last night. Did her first tube feed on our own and it went great. She doesn't wake up very hungry after "eating" all night. It is so great to be home and see the rest of my family, Loftin and Lucy have had a great week too. All her incisions on her back and gtube will take a couple weeks to heal...but I'm so thankful for how well she has done...it is really amazing.

I want to share some of the other things in detail, unexpected blessings and things I want to write down to tell of God's goodness.....it's a little scattered though, sorry about that....

Getting into the Ronald McDonald House the first day we got there was such a blessing....especially because it was just me and my mom. It was safe and convenient for her going back and forth. Also, my mom was such a help and support for me and Lee's mom, such a help to him with Loftin and Lucy. How could we do all these surgeries and trips without friends and family?

Dr. Oscar Mayer (who is awesome and great grandson of Oscar Mayer hotdogs :), our pulmonologist at CHOP, whom we hadn't seen since her initial VEPTR implant surgery a year ago, had her admitted two days early...which I was whining about all the way to Philly, actually ended up being a huge blessing. This allowed her to get albuterol treatments and examined several times to make sure her lungs were in good shape for surgery....I was so worried since the RSV and the docs had said she could have trouble. But he wasn't really aware of her RSV to begin with, so it's totally God that he just "happened" to want to admit her early to do a general pulmonary workup on MG. What confidence this gave us before the surgery. He also did a broncscopy during surgery and her bronchus (which was initially bent before veptr rods) showed that it was still wide open...praise God...the veptrs are doing so much to help her little lungs grow. Also, he has some other preventative treatment he wants to start when we go back up in 4 months that will help make her lungs stronger. Respiratory weakness is one of the effects of children with muscular dystrophy as they get older and the disease progresses. Thankfully she is showing no signs of this yet, except that her breathing is more shallow, but I feel so confident in our team at CHOP and in Bham that they are doing everything to help prolong this and make her lungs stronger and stronger.

Speaking of her muscular dystrophy....Dr. Mayer is also becoming involved in her diagnosis. He is good friends with Dr. Bonneman a world renown neurologist (who used to be at CHOP, but still sees patients there once a month) and has already been in contact with Dr. Pierre, our neurologist here in Birmingham. Well, Dr. Mayer called him up and discussed MG and we are going to get to see him at CHOP during our next visit. He has already been studying her case and biopsy and has some more specific thoughts on what she may have. So, we are getting closer knowing the type of muscular dystrophy...which is good...and ask you to keep praying as we find out more. I asked Dr. Mayer if children sometimes never get a specific MD diagnosis and he said, "they used to, but then Dr. Bonneman diagnosed them." We could have gone to several hospitals in the country to get MG's veptrs...but we chose CHOP for Dr. Campbell...and now I'm beginning to see so many other wonderful reasons why we are there.

And, one more thing about Dr. Mayer...he helped me register Mary Graham and our family in the CureMD registry. He said this is a great way to meet other families with similar diagnoses as MG and be up on new research and possibly participate in some clinical trials that may really benefit her.

MG did do well during the surgery, but I had not really shared that I found out later her recovery took longer (almost 3 hours) because she came very close to getting reintubated and placed on the ventilator. The doctors extubated her after the surgery and she was breathing very fast and not very stable.....but they gave her a drug to help her wake up more slowly and tried a different kind of oxygen tube down her throat. She took her sweet time (which is always the hardest part for me) but she recovered without a ventilator and was back breathing room air 2 days post op. This was exactly what we had prayed for...that she would recover well and without being on the ventilator. Not only this, but there was no sign of infection...at all. And Dr. Campbell is so pleased with how well MG has done with the veptrs, overcoming the infection and broken ribs. Praise God for being with her all the time and healing her.

Also, I posted a while back about Henry, the two year old who passed away 3 months ago. He was supposed to be at CHOP the same day getting his first veptr expansion. I had met him and his sweet mom on the very floor we stayed and we connected immediately since our babies were going through the same thing. She and I had been emailing and she said she was choosing joy through her pain, even though she wished she was bringing Henry to CHOP as we were bringing MG. This really helped my perspective. I prayed for her and thanked God for Mary Graham...for her life...for the way he made her...for the chance to be her parents...for the amazing doctors and team that has literally been placed in front of us...for the support and love of family, friends, and strangers....and for the chance to meet other families and their children from all walks of life.

The verse above is what I read before we left....it was if God was telling me to be still, be silent and let Him work. I was battling lots of fears this trip. So, while I was there I tried to spend more time being silent, praying and still before the Lord (and literally I really didn't text or email or talk to anyone but Lee on the phone) and it was such a sweet time of allowing and watching God work....showing me unexpected things and seeing Him fight for MG. One nurse even commented that everytime she came in our room, it seemed peaceful. I needed to let go of the control and when I did, He was able to do more than I could ask or imagine. It was as if I was the father of the sick boy in Mark 9......He asked Jesus, "But if you can do anything, take pity on us and help us." And Jesus answers, "If you can?...Everything is possible for the one who believes." Immediately the father exclaimed, "I do believe, help me overcome my unbelief." God can....I do believe....and he helped me see it with my own eyes....He has to help my unbelief. Little by little, he has increased my belief and trust in Him, not in doctors, or medicine or things of this world.....in Him alone. And I have faith that he will continue.

So now...back to normal life...school, soccer, dancing, therapy, and a fun surprise trip planned ahead for our kids :)...hoping for several months of good health, no surgeries or complications. Your faithfulness to pray has been incredible. Thank you for letting me tell her story. Took Lucy to the grocery with me yesterday and in the checkout line, she said out of the blue to the cashier, "would you please pray for my baby sister?" I was so taken back, she is very shy and this is unlike her. But I think God is using MG in all of our lives, which is my prayer.

Tomorrow is March 4th, two years ago she came in our lives and we were forever changed.....for the better. Thank you for loving and praying for her and our entire family.

Happy Birthday Mary Graham!

Home

Just wanted to say we are home and MG is doing really well. Now just trying to adjust back to our normal life with gtubes and such. We are so grateful for your prayers. Have so much more to say, will post longer tomorrow.