Henry

 This is Henry, he is two years old and had his VEPTR rods inserted on November 1st....he got a massive infection similar to MG's, but his was much larger and he had emergency surgery last Sunday to clean out the infection and start on antibiotics and was in the ICU. He had been stable but today he crashed two times and passed away this afternoon. Carla, his mom and I got to meet while at CHOP just a few weeks ago and we had become good friends via email, she is a Christian and we bonded immediately with our babies going through similar things...I also got to meet sweet Henry, who was adopted from Ukraine last year. We have a very tight, supportive veptr family group and everyone is in shock and heartbroken for them. He is resting in the arms of Jesus now and his family loves the Lord. Please pray for his family.

The fog

We're home! Sorry for the long delay in posting....Mary Graham and I flew home on Thanksgiving Day and were able to spend it with our family. It is so good to be home and especially see Loftin and Lucy...this trip seemed so much longer than some of our others up to CHOP.

Needless to say, we were very thankful on this Thanksgiving Day. Thankful to God and for those of you who so faithfully prayed for her. And for my sister who flew up and helped me the last 5 days. The last several days have been a bit of a fog, but it is starting to lift...it can be so emotionally and physically draining, although Mary Graham hasn't missed a beat and she is doing so great. She has a big incision on her back, but it doesn't seem to bother her, except when we have to change the dressing. In fact, when we got home she immediately wanted to get in her zip zac chair and has been zipping around ever since. She's getting really fast in it and can even turn around.....amazing how quickly she has picked it up. Today Lucy was coloring in her room by herself and MG was in her zipzac and was wheeling in there to "play" (she loves to just go  in Lucy's room and pull things off her shelf) but then I heard Lucy say, "No, Mary Graham, you can't come in here...momma, get her, she is just going to roll over all my color pages." I laughed at how funny that sounded...but then I'm thankful that MG has a way to "get around" now, even if she's rolling over things she shouldn't.  And how Lucy just thinks MG in her zipzac is the norm.....this zipzac is really a huge blessing.

MG will have lots of follow up appointments, bloodwork, stitches removed and will remain on antibiotics for the next few months. Asking for continued prayers of healing for this infection and for it to not return. MG will have her expansion surgery in two months on Feb. 5th....so back to Philly we go. That's the plan, but I tend to hold these "plans" loosely, as you never know what God has planned and we trust in Him. He brought us through this trial and remains faithful always.

Thanks again for your prayers....we are hoping for a nice quiet Christmas....well, relatively quiet with three kiddos :) And hope you each enjoy this next season of celebrating our Savior's birth....praise God that there is so much hope in this world because He came.

Praises

Mary Graham is all done with surgery....it went very well. Dr. Campbell was pleased with her healing and removed the vac. She will remain on antibiotics for several weeks. She's recovering well and we are so very thankful. Thanks be to God for walking us through today and everyday we have been here. Please continue to pray for the infection to be gone completely as we return home. If she's doing well, we will return to CHOP in a couple months for her expansion. 

The plan is to be discharged tomorrow and fly home on Thanksgiving day, Praise God! I think I am more thankful this year than ever...thank you for praying for MG and us.

I think I can, I think I can....

This pic is about how we feel right now...let us out :) MG is still doing really well, just battling a little pain, but overall still improving. The ortho doctors said her surgery tomorrow would probably be removing the vac and sewing her up, or if it's not healing properly, to replace that vac with a new one and stay another week, or there is always a chance the rod will have to be removed, or if Dr. Campbell feels right about it, he may go ahead and do her expansion. So, always lots of options to play out. Of course I would choose the first. Met some families who have been here weeks and weeks....it will be ok no matter what the next step is for MG. Thanks so much for all your prayers of healing and strength and endurance.  Hoping we are closer to the finish line for this journey. 

Not sure what time her surgery is tomorrow, I am hoping first thing in the morning. I will post tomorrow when she is done.

"Cast your burden upon the Lord, and He shall sustain you." Psalm 55:22

Thankful

Hanging out with Daddy

Finally gave MG a bath and a new bow

Mary Graham continues to get better each day. We are so thankful for your prayers and know they are being heard. Her next surgery will be on Tuesday, it was suppose to be on Monday, but something happened with scheduling. So, sounds like we may be eating turkey in the CHOP cafeteria :)

Since we do a lot of sitting around right now, I have been reading friends' "thankful" posts on Facebook. Lucy had her Thanksgiving program at school, which I'm so sad I missed, but I know the songs she was singing....she's been practicing for weeks. She was singing the hymn "Give thanks"....so that song has been on my mind. And so I decided to tell what I'm thankful for...because, even though, this is not what we planned for MG, when I look around, it could be a lot worse and I truly am thankful for so much.

Lee. I am so thankful for him. He is a loving and involved husband and father and is a perfect match for me. God knew the kind of husband I would need to get us through these harder times. He even let me escape for a couple hours today and explore Philly, the shopping district is great therapy :)

Family. My parents and Lee's parents are so loving and supportive. We don't have to worry at all about Loftin and Lucy when unexpected travel or extended hospital stays come along. Such a blessing. And my sweet sister is flying up to Philly on Sunday to stay with us since Lee is going back home tomorrow.

Friends. We have the most amazing friends...they text all the time checking in, asking how to help and mostly just praying for us and MG-I would not be able to get through any of this without my family and friends. You are a blessing!

CHOP and all our nurses and doctors. Without this place and Dr. Campbell, MG would not have as quality of life. Even though it's far from home, I'm so grateful for this place.

Technology. I'm really so thankful for Kindles, Ipads, Netflicks, etc, etc...it makes long hospital stays more bearable...Lee resorted to watching clips from Airplane yesterday, and I have watched probably 10 episodes of Parenthood. Desperate times call for desperate measures-right?

Jesus. Without Him, nothing would be worth living for and He is always with us and loving us through the good and the bad. And He gives us hope that this is not all there is.

And I could go on and on....please continue to pray for MG, her healing, her surgery next Tuesday and for strength and peace for us. Lee is going home tomorrow and my sister is coming up on Sunday to stay for several days.

We are thankful for each of you and your prayers.

A little video

Here's a little video of MG this afternoon, praise God, she is definitely improving. We found out that she has a staph infection, not MRSA, which is a morning difficult infection to treat. So we are so thankful that they finally have a specific diagnosis of the infection and can have a better treatment plan. Pray that the infection will be completely gone and not "hanging" out on the rods where it could come back. Thank you for praying!


IMG 0121[1] from Jennifer Sheppard on Vimeo.

Just waiting

Just a quick update....Mary Graham is doing better today than yesterday, she had a rough time just getting over the surgery. But today she hasn't run any fever and is eating a little and playing. We are just waiting and watching her heal. Please continue to pray for her healing and the infection to be gone completely. We are so grateful!

Surgery done

Mary Graham is out of surgery, she did fine, still in pain and recovering from anesthesia. Dr. Campbell found the infection, cleaned it out and place a wound vac drain at the sight of infection. The vac will stay in for a week and then she will undergo surgery again to remove it. At that point, the drs decide if the tissue is healing well enough to take out the vac. There is a 50/50 chance the rod may have to come out. So, she will start back on antibiotics and hopefully be on the road to healing.
 Pray for healing and the vac to get all the infection. She still has a long way to go and we will be at CHOP for a while. We are thankful that it is done and went well, thank you so much for praying.

Things are moving

Last night they did an ultrasound and found what appears to be fluid/infection around her left rod (this is the place where she always rubs). Praise God for some answer to the mystery infection, although we won't know for sure until they do surgery. I was literally on my knees during that ultrasound praying that they would find some and God, in all his mercy, answered. She has had a CT today and will have surgery tomorrow. The surgery will most likely not be the expansion. They will go in and culture and clean out the infection, see how bad it is and then possibly put in a wound vac that will remain in her back for a week. Rod removal is always a possibility, and we will cross that bridge when we come to it. She will remain on heavy antibiotics too. So, lots of different scenarios could play out tomorrow, I have quit guessing, but I do ask the doctors lots of "what if" questions, they love that :) Only God knows what will happen, so we will have to trust in His plan.

When trying to decide what to do in the middle of the night before our 6:00 am flight out of Birmingham, when MG spiked that fever....we prayed that we were making the right decision to get on the plane and fly up here to CHOP. I was even calling Med-Jet at 1:00 AM to see about getting her transported up here from Children's in Bham. But God has gone before us. I hardly even remember flying up here (probably because we hadn't slept) But really it was like God just carried us up here, keep MG safe and stable, with no delays, and we came directly to CHOP from the airport after she threw up at baggage claim. They ER was quick and they got us in, understood her history of this infection and before we knew it we were admitted and God just started moving quickly and the doctors at CHOP did too :). Her already scheduled surgery for tomorrow will take place with Dr. Campbell, of course it being much different than we expected and still won't know for sure until they get in there.

 Although this is exhausting and overwhelming, we just want her to feel better and to get the infection out of her body. So we praise God that he has moved and His timing is so perfect. She had been great for three weeks off antibiotics at home and the night before leaving for CHOP it resurfaces....His hand is in the details. We are exactly where we need to be (maybe for a while) but we ask you to pray for surgery tomorrow and thank God for all he has done so far, but continue to ask Him to heal her from the infection and wisdom for the doctors. 

MG is doing a little better this afternoon, her fever is down and she has been eating and playing a little-not wanting to move much because of pain.

Thank you so much for praying for us once again, MG is so tough and we know hospital life very well.... there is no tired like hospital tired....it's no fun, but God gives us grace and peace when we need it. And your prayers keep up lifted up and moving forward. We appreciate it more than you know. Keep em coming, God is always hearing them and ever-present and working. Thank goodness we have a God working on our behalf and loving us through it all.

I will post more tomorrow after surgery, it will most likely be first thing in the morning.

Long, long day

We have made it to Philadelphia and went straight to CHOP. MG spiked a fever at 1:30 am this morning. We debated taking a later flight and going to the ER in Birmingham, but we felt like CHOP is where she needs to be if her infection has returned. She has been pretty pitiful all day. So far we know her bloodwork came back showing high white blood count and inflammatory markers, just like before with her infection. We are waiting to hear from ortho drs and will be admitted today. Not sure what the plan will be regarding surgery. Please pray for all that is ahead of us and the doctors involved and for MG to feel better. They are starting back in antibiotics and will start a number of tests to try and find the infection. We have been down this road before and it is no fun and I have a feeling we will be here a while. Pray for answers to come quickly and for them to be able to treat her and for her to get better. We are so thankful for your prayers, we know God isn't surprised by any of this. Pray for peace and endurance for us.

Some prayer requests

We leave very early tomorrow morning for Philadelphia and Mary Graham has not been herself today. She is in some pain and pulling on her back, the same place where she did before when the infection began. Although I hope I am wrong, I feel like I know her so well and I fear it might be returning. Thankfully we are heading to CHOP and that is the best place for her to be if we start to face infection again.

MG will have surgery Tuesday morning for an expansion of her rods. In July, this was a quick procedure with one night in the hospital...I'm afraid things may not be as cut and dry this time around with the possible infection. I'm not exactly sure what to ask you to pray for.....pray for wisdom for the doctors and, if the infection is returning, to be able to find it and have a plan to get rid of it. Pray for Lee and I to be prepared for whatever may come. Pray mostly for Mary Graham as we travel and wait for surgery, for her pain and comfort to be managed. Also, please pray for Loftin and Lucy and the grandparents taking care of them...we are so thankful for such wonderful family and they love to being with them.

Pray for God to go before us, let us trust in His plan for this trip and to see His hand in all the details. He is always faithful. I will update my blog and caringbridge....we are always so grateful for your prayers.

Running for MG

Mary Graham has been going to The Bell Center, a privately funded early intervention program for special needs children, since last February and it has been such a blessing for her and all of us. Right now she goes on Tues and Thurs for a two hour class where she gets Physical Therapy, Occupational Therapy, Speech and Special Ed. In addition, they do music, dance, and even have dogs come in for pet therapy. She had a hard time adjusting at first (cried most of the time), but now is doing really well and actually is having fun and working hard. The therapists and all the volunteers are wonderful and I tear up everytime I take her because it is such a place of joy and hope in the midst of this hard journey we are on for her.  Here is the website if you would like to see more of what they do....http://www.thebellcenter.org/.

Coming up in February is the Mercedes Marathon here in Birmingham, which is the biggest fundraiser for The Bell Center. We are just starting to get together Team MG, those that will run for the Bell Center in her honor. The options are to run or walk a 5K, the half marathon (13.2 miles), the full marathon (26.2 miles), or a relay team of 5 people divided up as a 10k (6.2 miles), 5k (3.1 miles), 10k, 5k, and 12k. I have had several friends and family tell me they are interested in being on a relay team or running for MG and you get to wear her picture on your shirt when you run. I'm trying to get our team together and start getting everyone registered. My plan is to raise $2620, that's $100 per mile. If you want to participate and run for MG, we would love for you all to be a part of her team. But do not feel like you have to donate money or ask donors for money, I'm going to take that under my wing. However, if you want to donate or know someone who would like to, please let me know.

If you want to run for MG or donate to our team for the Bell Center, contact me at jennifercsheppard@hotmail.com and I can tell you how to register or donate.

Thanks for all your prayers and support for Mary Graham!

Fever gone

Mary Graham's fever never returned after Wed afternoon, we are so thankful. Still continuing to pray the infection stays away. Thanks for all the prayers!