A Better Day

Today has been so much better....MG woke up in pain, but has only needed morphine this morning and since about noon has been on motrin and tylenol. Her first gtube feed went great and I went to a class to be trained on how to use it and what to do if it falls out...yikes....it can start growing back together in a matter of two hours. I feel pretty confident in it though. And will have more training tomorrow. She has been on room air all day, no longer needing oxygen. The plan is to do her full feed tonight (only did half last night) and if she has a good night and pain is controlled then we can be discharged tomorrow. Yippee!!

Praise God for carrying us yet again through this.....I always love typing these emails at the end of another step in MG's journey and how grateful to look back and see how God held us up and did more than we could ask or imagine.  Please continue to pray for her healing. Have more to share about the details of our trip in my next update and how God always shows me unexpected blessings. We are so very thankful for you and your prayers....to experience this kind of support and love gets me through each day.

Here is a little video....




IMG 0686[1] from Jennifer Sheppard on Vimeo.

Day One Post-Op

Mary Graham has had a pretty rough day....she is still battling pain, needing morphine rescues and is getting a stronger form of motrin (tordal?) around the clock. Although she is only on .5 liters of oxygen and her g-tube seems to be working. She will be getting her first "feed" through her tube tonight and hopefully she will tolerate that well. The pain is mostly due to her gtube placement in her stomach because of cutting through abdomen muscle and this should take a couple days to heal. She is also running fever, which can be common after a broncoscopy. I held her once and she hurts a lot when she tries to move or even coughs.

This afternoon she did perk up a little and we got  a few smiles....

But can't wait until she is back to this...

Please continue to pray for fever to resolve, her tube feed to go smoothly, pain to improve and just for a better night and day tomorrow. We have had wonderful nurses and such great care here at CHOP. We are thankful for your prayers and for all the prayers that have been answered so far. Here is a verse/quote from an email I received today, such a sweet reminder in the midst of all this about the deep love of our God...

Your Father says, "I called you by name from the very beginning. You belong to me, and I know you as my own, and I am yours. You know me as your own true Father. I molded you in your mother's womb. I carved you in the palms of my Son. I hide you in my embrace. You have my infinite tenderness, and I care for you intimately. I have counted every hair on your head, and wherever you go, I go with you. Wherever you rest, I keep watch. I give you food that will satisfy all your hunger and drink that will quench your thirst. I will never hide my face from you. Nothing will ever separate us. Wherever you are, I am. Live your life as my redeemed child. You can reach out to true inner freedom and find it ever more fully."

Surgery day

MG is done with surgery...they started earlier than planned, lasted about 4 hours and then had a slow recovery. Thankfully, all the procedures went very well, the broncoscopy, the gtube and the veptr expansion...it's just a lot for a little girl in one day. She has been a slow to recover and she is on oxygen. But thankfully she did well enough to move us back up to the pulmonology floor and not have to go to the ICU. She can't eat or drink until tomorrow because of the gtube.

We are so thankful that God walked us through this exhausting day and allowed her to do so well. Have many details to share of God's goodness when my brain is better :) Please continue to pray for her pain and recovery.

Another good day

Today was full of visits by lots of doctors, bloodwork, IV placed, X-rays, etc....and in between all that lots of visits to the playroom. This is the first time we have been in the hospital in a while that we have not been on isolation and she has been able to play in the playroom. And bring lots of toys back to our room...the child life specialists set up a big mat on the floor and she's been having fun not being confined to her bed. I believe she has actually had fun at CHOP :) and doesn't seem quite as "staff-phobic" with all the nurses and doctors.

So, now on to tomorrow...she is third case for surgery, so probably will go around 11:00 am and last over two hours. All the doctors think her lungs sound great and don't anticipate any issues with her lungs and hopefully the albuterol treatments have helped also. She will go to the ICU after the surgery. She is having bronoscope to examine her lungs, expansion of her rods and the gtube placed.

Please pray for smooth surgery, no complications and her recovery and pain afterwards. I have felt peace today...so thank you for continuing to pray and lift us up. God has encouraged us with the doctors and nurses being so positive about how they feel she will do during surgery. We praise him for being ever so present in every detail and praying for yet another good day tomorrow.

A good day

Left super early this morning and had perfect travel to Philadelphia...arrived a little after noon. MG has been feeling good and still has a little runny nose and cough, but overall acting great...except for screaming "no" on the plane several times (it's her new favorite word :).

When we arrived we called Ronald Mcdonald House and got in! Never have we gotten a room the first night we are here and since it's just me and my mom, this is such a blessing. Check in there and then got all checked in at CHOP. Seen several doctors and nurses...we are on the pulmonology floor. All the doctors so far think she looks great and lungs sound good....so that is very encouraging. She has even let some of them touch her without screaming. They are starting her on albuterol treatments today and tomorrow to optimize her lungs for surgery...i'm so glad they are being very cautious and preventative with her. Tomorrow is a busy day...xrays, bloodwork, GI testing, and see lots of doctors. She has been sound asleep, but just woke up coughing and threw up...so not the best end to a good day. But our sweet nurse is washing her "loveys" for her now.

I'm about to try and get some sleep, they are going to leave us alone tonight...and I have my new memory foam mattress all ready on my cozy hospital vinyl couch/bed (i'm finally getting smart about hospital living :).

We are so thankful for your prayers...we have certainly felt them today. Please pray for her runny nose and cough not to worsen and for things to continue to go smoothly. Continuing to trust in God and His mighty hands that hold Mary Graham so tightly.

One more request

Mary Graham woke up yesterday with a bad runny nose and congestion....no fever though and she seems to feel okay and I don't think it's in her lungs. But this just adds to my worries. Please pray she doesn't get worse and this doesn't interfere with her surgery on Tuesday. So glad we are being admitted tomorrow. Thanks for all the prayers!

"Little Miracles"

"But as for me, I trust in you." Psalm 55

 

A couple months ago in Sunday school, a friend was praying for Mary Graham and I specifically remember him saying, "Lord, we thank you for the little miracles in Mary Graham's life." I thought that was such a perfect way to pray. For some reason, it stuck with me for days and weeks after....it just encompasses her little life so well and God's hand in every detail. Through all the ups and downs we have seen little miracles....one at a time. And God has showed me how to open my eyes wide, to see more of what He wants me to see....to see these little miracles. She is feeling great these days, totally off oxygen and really wanting to move more, we have been concerned because she hasn't had much drive to want to move, all a combination of her MD, scoliosis, surgeries, and fears, but the last month she is showing more effort. Today in therapy she took a few wobbly steps with support of her wagon, she didn't like it one bit, but to me it was another little miracle. And, you have all been praying so diligently for her rod infection not to return.....well, she has been off her antibiotics for over a month and she has had no fever or even one sign of infection, it would  have returned by now. I am a little hesitant to even type out these words....I really had my doubts and thought it was going to come back (even the doctors were not very positive) ....but with your prayers and God's amazing grace and mercy I believe that He has healed her infection.....in my book, this is a big miracle. Praise God for this huge answer to prayer.

So, off to Philadelphia we go this Sunday....surgery to expand her rods and insert a G-tube will happen on Tuesday. Last week we saw our pulmonologist for a follow up from the RSV and he was glad she was recovering well. Although he mentioned she may have a harder recovery next week because the RSV can linger for months in your lungs. Please pray for our fears and doubts as we approach this surgery. She will actually be admitted on Sunday, two days before surgery (this is a new approach for the VEPTR kids the CHOP team has put in place to optimize the pre-op care and have a full pulmonology workup...and I'm actually very glad). Because we were just at CHOP less than three months ago and then at Children's again here in between for the rsv....to be honest, I just really don't want to go back again right now....when she is doing so well, it's hard to think of putting her through even more next week, even though I know she needs it. Of course I know God is with us, he has reminded me daily of his presence and that He is in control....but the longevity of her treatment with so many surgeries seems to be hard to swallow these days. And I'm just more nervous this time....maybe because we have been through quite a few "hurdles" these last 8 months and I wonder what is just around the corner. Through all my doubts though, I know God is going ahead of us, He always does and it is these times when I am weak, He is strong. And we are very thankful for CHOP and how the rods are helping her lungs grow. The verse above comes at the end of Psalm 55 after David has been telling the Lord all his fears and worries and distress and then at the end, his conclusion, what seems so simple, but true....just trust.

Mary Graham will be 2 years old on March 4th....it's hard for me to believe, but then again, sometimes it has felt like 10 years. Lee and I laugh and say if someone had taken a picture of us 2 years ago and compared it to today, we probably have many more wrinkles and gray hair :) Most of the time she is a complete joy, but I can definitely tell she's about to be two....I have seen a few glimpses of the "terrible twos"....oh dear....not sure how the non-mobile, very verbal two year old is going to play out...one day at a time, right? I am looking forward to all God is going to do in her little life over the next year, I am expecting great things...and i'm sure more gray hair too.

We ask you to pray for her expansion and G-tube surgery, for her lungs and breathing, the anesthesia, her recovery, Dr. Campbell and the other doctors and for no complications to arise. Also, for our fears, for peace and for us to just trust. My mom is going with me and MG and Lee and his mom are staying behind with Loftin and Lucy. Please pray for traveling and all the logistics. We covet your prayers, always.

A weekend to remember

This weekend in pictures....

About to head down to the events for Saturday

Loftin with his Mary Graham picture on his back

Lucy and MG ready for the kids and siblings Bell Center race

Lucy and Katie Cobb about to run the siblings race for their sisters

Mary Graham "running" in The Bell Center race

Sporting her Mercedes Marathon medal

The siblings race

Loftin won the siblings race (it was only 50 feet :)

Team MG

Brian finishing the half marathon for MG and The Bell Center

Laura running the half for MG

Relay Team for The Bell Center

After party at Boutwell

Relay team and their medals



Loftin and Lee coming in 2nd place at the Pinewood Derby race for boyscouts


What an awesome weekend that has truly been one to remember! The Bell Center kids race started it off on Saturday morning (it was freezing-but at least the sun was shining). Then Loftin and Lucy raced in the siblings race and received medals for running for their sister. Loftin then ran a mile for his elementary school--actually he sprinted and I was running with him....needless to say, it was the most exhausting mile of my life :) Then off the the pinewood derby Saturday afternoon where Lee and Loftin came in 2nd place! Saturday night we had all those running for Mary Graham over for some pasta and carbs and then Sunday morning came bright and early and at about 24 degrees-yikes! But all the runners did awesome and it was lots of fun. And I'm so thrilled to annouce we raised over $4,300 for The Bell Center in honor of Mary Graham. We could not have done that without YOU!! I have been moved to tears this weekend watching all the support for MG and the Bell Center children. It really is a wonderful place for these special children. We are overwelmed by your support, love and prayers. Now that we have experienced the marathon weekend....we are going to go bigger next year.....have more runners and a higher goal for our fundraiser....so get ready and start training now :)

Thanks to all those who donated and ran and were a part of a weekend we will never forget!

This time next week we will be flying out to Philadelphia for Mary Graham's upcoming surgeries. Will update more about that soon.





Someone's feeling better

IMG 0660[1] from Jennifer Sheppard on Vimeo.

Here's a video of Lucy and Mary Graham....even after all she's been through the last few months, she has learned to turn herself around on her little bench that our PT gave us. We are so thankful for every step she makes in her development and progress. Obviously you can see she is feeling so much better, almost completely off oxgyen. I was beginning to think she would never get back to herself. And Lucy is my little entertainer and so sweet to MG (most of the time :).
Thank you for continued prayers of healing and no return of the rod infection. We go tomorrow to our pulmonologist follow up and then we return to CHOP for expansion and G-tube surgery Feb. 26th.