The sun

It has rained every day since we set foot in Philly, not the ideal weather. But today I believe the sun is out. At least it looks brighter outside from our room :)

MG is doing well, she had a good night and has been complaining more of pain. But the meds seem to help. She's been watching tv, coloring, doing stickers, and now she's playing doctor. She had X-rays and we are waiting to see the doctor one more time. We are getting discharged soon and will head back to RMH. 

Thank you for your continued prayers!

Long day

Mary Graham is doing really well, she has improved as the day went on and her pain seems to be under control with meds. She may need a little O2 while she sleeps tonight. We are waiting to talk more to her pulmonologist about her lungs and how we will help them improve. He believes the partial collapsed areas of her lungs is due to muscle weakness (not being able to cough deeply) and the shape of her chest wall. Dr. Campbell said she will need one rod replaced next visit and possibly add another smaller one. Kind of a lot to think about....But for now, we will be thankful for today and try not to anticipate the future. I know God has heard your prayers, thank you for being so faithful.

My sister and her family have been in Pennsylvania this week and arrived in Philly today. They had planned this trip a while back and it happened to fall the same week as MG's surgery. So they were able to visit us today and mg loved seeing her cousins, even though in the picture she doesn't look happy :) And they took me to dinner tonight to give me a break from the long week. Lee is staying with MG tonight, so I can sleep, he's the best!

Lee and I are celebrating being married 10 years today, so crazy where the last ten years have taken us. But I wouldn't want to walk this journey with anyone else. I love him more today than the day we were married. We both laughed when I turned to him in the surgery waiting room today and said "happy anniversary." 

Thanks again for praying today and always! 

Recovery

Mary Graham is out of surgery and in recovery. She's doing ok, in pain, but morphine seems to be helping. She ended up having a bronchoscopy with Dr. Mayer because of some partial areas in her lungs that were collapsed, they were able to see this on her CT and MRI from tues. He believes this is a chronic issue. I will elaborate more on that later. But she's doing well for now and we are moving to pulmonary floor soon. Thank you for your continued prayers! 

Our day off

Today we said good bye to Julie and she made it safely home. Lee is mid flight right now to philly. 

Mary Graham and I had lots of quality time together today. We grabbed a taxi (I'm such a city girl now) and went to The Please Touch museum. It was wonderful! A museum for children ages 1-7, filled with hands on activities, some of her favorites being the grocery store, life size bus and cars and of course, the mini Children's Hospital of Philadelphia. See in the picture she is giving her baby an MRI :)

After a few hours there, we headed back to the RMH. We were both tired and she took a long nap. Then back to playing with the trains and toys. We had dinner here and then  another therapy dog came to visit and she loved watching and playing with him. I think a new dog may be in the future, she is obsessed.

I gave her a bath and wiped her down with her special antibacterial wipes from the hospital. Now I'm hiding from her while she is trying to go to sleep and she's belting Let It Go. We have to arrive at 7:00 am and she is first case. 

I spoke with Dr. Campbell's nurse today about her ct and MRI and she told me the percentage of her lung volume and how much it has increased since the veptrs were implanted over two years ago. Both have increased significantly, the right more than the left. I can't imagine where she would be without these veptr rods. They are giving her a quality of life she would not have. It reminds me that this is all worth it and how much God has lead us every step. And He will be with her tomorrow. We covet your prayers for a smooth procedure, for her lungs and the recovery. I will update soon tomorrow. 

Here is the verse I have been praying for MG over the last couple months as she grows and becomes more aware of herself and how God made her....

"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him." 1 Cor. 2:8

Rough start, better end

This morning was rough with MG's MRI and CT. She was grumpy and thirsty while waiting, lots of distracting and bribing. They let me go back with her to be put to sleep and after giving her some gas through her candy smelling mask she started throwing up and her sats started dropping. They began to give her the anesthesia and I left. The doctor kept saying this was normal with her chest wall and secretions in her lungs. The nurse came and told me about 45 mins later that she was settled and doing fine. These events are so hard for me and fears just take over. I don't think I will go back with her anymore though. But God kept her safe and we are so thankful.

It took her a while to wake up and we went back to recovery. They said she would most likely cough a bunch and throw up. Well, after about 30 minutes she  popped open her eyes and said "I was so brave!" I'm not kidding. Then she insisted on seeing the doctor who put the Iv in her foot, she was hilarious. Then she ate graham crackers and juice and we were outta there.  

All she wanted to do was play at the RMH so we ate some lunch and everyone took a much needed nap. Then walked around the city and had Mexican for dinner :)

Julie leaves in the morning and then Lee arrives tomorrow night. She has been so supportive and helpful. I'm so thankful she could be here with us, she has been a huge blessing. 

And the best part of the day for MG was Zena the therapy dog that came to visit the RMH tonight. Pure joy! 

Tomorrow we will rest and get ready for surgery on Thursday. Please pray for safe travels for Julie and Lee. Thank you for walking with us!

Old Soul

Today reminded me how much Mary Graham has been through in her little life, she is an old soul. She doesn't even hesitate anymore walking into CHOP, tells all the nurses and doctors, "I'm so brave" and pretty much could do all her vitals, height, weight, etc on her own, she's got it down and says that everything "tickles." 

She has been through so many surgeries and pain, yet she is full of joy! So much joy! And I'm reminded of the joy and sorrow we face each day, how they are intertwined, how the joy is always brighter after facing the sorrow. And it reminds me mostly of the cross, where Christ endured the pain and sorrow so we could experience the ultimate joy.

Thank you for praying today. It was long, but went well. Just lots of waiting and talking with doctors and nurses, preop stuff. They were glad to see her progress and development. 

After walking back to the RMH we rested some, then walked around town a little bit and ate at Bobby's burger palace, had to introduce Julie to the best burger and fries :). We are already heading to bed. 

MG will have her MRI and CT first thing in the morning. Have to be there at 6:30 eastern, yikes! Should last a couple hours. Please pray for no complications and for God to keep her safe during the procedure. 

We are always so grateful for your prayers!

Smooth day

Julie, MG and I have had a great day. Flights were good, mg was so good (even with no nap all day) and best part, we got a room at the RMH 😄. And our room even has a bathroom, this is a first. We have to go to the hall bathroom to shower, but that's no big deal, kind of like camp.

I have never seen MG get so excited about going to the RMH and she played all afternoon, such a blessing to have toys and a playroom and not be stuck in a hotel room. So thankful for her sweet temperament, but hate to put her through so much this week. She is sound asleep now.

Tomorrow we will see Dr. Campbell, Dr. Mayer, anesthesia, labs, X-rays, etc. A very full day. Would appreciate your prayers for a smooth day and MG to hang in there with such a long day ahead. Pray also her appetite improves, maybe she had just been out of sorts, but hasn't wanted to eat much today at all. 

It's been so great having Julie here and getting to spend time with her. She said it's so good to see Philly and CHOP through her own eyes and all we have been a part of these last three years. She will be a pro after this week! I love having her here with us. 

Thank you for your prayers! I'm always so humbled by God's love and grace when we come up here. Praying for another smooth day tomorrow.