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!