Another's perspective

Here is a "guest" blog entry from Julie. I loved having her in philly part of the time. Not only just to help me with the logistics of travel and MG, but support for me emotionally. Someone to talk to and walk with me through my fears. 

MG is doing well, she is wanting to play a lot and loves being home with Loftin and Lucy. She gets really tired and is sleeping a lot too, which is what she needs. 

Here are Julie's words....

Philly through my eyes.... I feel so blessed to have had the
opportunity to experience this trip to Philadelphia with Jen and Mary
Graham. Jennifer and I have been friends since we were young kids and
we have shared so much together. From childhood memories to family
vacations, from being college roommates to being in one another's
weddings. Now we're both moms to three kids and our friendship has
continued.

I feel like I have been on this journey with Jen, Lee, and Mary
Graham, as many of you have. I have prayed them through their many
trips and surgeries. So when Jen called me last week and asked if I
could go along, I was thrilled. As I was unsure of the logistics and
how it might happen, God was not! Everything fell into place and on
Sunday morning, we met at the airport and were off. Mary Graham has
not spent a lot of time with me, but warmed up quickly and seemed
happy to have me along. Can I just say that as a teacher, I spend lots
of time with kids, and I don't know that I've ever been around a child
who is so go with the flow, patient, and well-adjusted! She is a true
little angel!!

We arrived in Philly and were able to secure a room at The Ronald
McDonald house, which was such a neat place! It was child-friendly,
comfortable, and so accommodating. MG loved the train table and
playrooms best of all!

On Monday, we took a taxi to CHOP. I was again, so thrilled to
finally see this awesome place that we've heard so much about. I told
Jen, it didn't really feel like a hospital. It was bright and
cheerful. We had three appointments that day and spent a good bit of
time in waiting rooms, but again, Mary Graham didn't complain one
time. She just wanted to be reassured of what we were doing each time
and wanted to make sure Mommy would be with her. MG and I spent some
good quality time coloring and munching on Doc McStuffin gummy snacks
while Jen talked to the doctors:) I got to meet a few of the doctors
who have been such a huge part of MG's journey. After a long day if
appointments we enjoyed dinner and turned in early for the night.

Yesterday included Mary Graham's MRI and CT scan. It was an early
morning and she seemed a little more anxious. She's a smart little
girl and again, wanted continuing confirmation that she could have
some apple juice and yogurt after they "took her pictures." As Jen
said earlier, when she woke up from anesthesia, she sat up and looked
at Jen and said, "I was so brave." Melt your heart!! After a good nap
yesterday afternoon, we enjoyed a yummy Mexican dinner and went to bed
early again!

I'm headed home today and Lee will be joining them tonight. I feel so
blessed to have been able to be a small part of this journey. I have a
totally different picture in my mind now of what exactly they are
going through each time they make the trip to CHOP. And I now know and
have felt the prayers that are being heard and answered by our
almighty God!! He has such big plans for sweet Mary Graham! I have a
whole new admiration for Jen and her family. I've always known she was
a special person, which is why she's my BFF I guess:) I will join you
all in continued prayers for this precious family and for sweet Mary
Graham!

Home

We are home! Been up since the crack of dawn to catch our flight. Travel went smoothly. Mary Graham had an ok night, she is much more verbal about her pain this time around. One minute she's happy and playing, then she she will suddenly say her back hurts and cry. Her bandages are itching her also. Seems also to be having some muscle spasms on and off. But she did fine on the plane ride home. 

Last night Lee and my brother in law and nephew went to the phillies baseball game, while my sister and niece hung with me and MG. She was hurting a lot last night, but as long as I keep her meds around the clock that helps. Just going to take some time for her to heal. 

Thank you all again for praying for us! So thankful this week is behind us and we can start enjoying summer as a family now. Loftin and Lucy are heading home right now too, can't wait to see them! 

I will keep you posted on her over the next week or so. We are always grateful for your prayers as we transition back to real life :)

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. 

Desperate

The last week of May was full of changes for our family....we said goodbye to The Bell Center after almost 3 years and watched Mary Graham walk all by herself to get her diploma. A moment that I thought may never happen. 

Our sweet little dog, Bailey, who was 13 years old died. He had been mine before I even met Lee. We were sad to say goodbye. 

Loftin and Lucy finished up kindergarten and 2nd grade, with soccer coming to and end and a dance recital to top it all off. Then we sent Loftin off to Alpine Camp for Boys for 10 days. Lots of bittersweet moments. Here are some pictures from the last several weeks.

Walking like a big girl

Getting her diploma from Miss Betty Bell

Reception after graduation-she was grumpy by now

Mary Graham's awesome therapists

Last soccer game of the season

Dance recital-tap routine to "At the Hop"

Last day of kindergarten and 2nd grade-how are they this old?

MG and her friend Neely did swim lessons. It was hard for MG but she loved the water and know it will be a great place for her to gain some strength. 

Gymnastics performance

A little dress-up fun (she picked this out)

10 days at Alpine Camp-he said he was having the time of his life!

Sweet tiny Bailey, this is when he was a puppy and this was his favorite place to be

So, now we have jumped into summer and are leaving next Sunday for Philly for a week. Mary Graham will have a few more procedures than usual. She will have doctor appointments all day Monday and then an MRI and CT on Tues. June 10, which will require anesthesia and then Wed we take a break and then expansion surgery on Thurs. June 12. She is doing so well right now and I hate to have to put her through all of this.

Please pray for an uneventful trip and smooth procedures and surgery and her recovery. Also, Loftin and Lucy will be going for a week to stay with Lee's parents. Loftin came home from camp today, we missed him so much, and he and Lucy are heading to Tallahassee tomorrow. Please pray for all of the logistics of our plans, safety for us while we are apart and our travel.

Please pray for us to get a room at the Ronald McDonald House also-this is always a huge blessing for so many reasons.

God never ceases to amaze me with working out all the details of our trip. He has lead me to trust more and more....I do loose sight of His grace sometimes, but other times He lets me see his grace so vividly. My mom was going to go with me for the first half of the trip, but has been having some complications with her atrial fibrillation. Nothing too major, but just very unpredictable these last few months. So, we had both been nervous about her going. Well, at the last minute (which seems to be the trend with God's timing :) I asked my long time best friend, Julie, to go with me. She didn't even hesitate and was able to drop her life to come with me and MG next Sunday-Wednesday (even leaving on her birthday and leaving her husband and three kids behind). She is just that kind of friend, we have known each other our whole lives and lived together at Auburn-had our dorm room bedding picked out at age 15 :). Anyway, I'm forever grateful for faithful friends that walk beside us during this journey and secretly Julie and I are excited to spend some time together-even it involves a hospital and a little 3 year old girl. It is such a help to have a friend to travel with and help with all the logistics. Lee will come Wed night through next Saturday. We are so thankful to God for working things out!

Mary Graham has had a cough for about 2 months now and of course we have been praying for it to be gone before having to go under anesthesia twice next week. Well, after a couple doctors visits and some new meds, she has finally stopped coughing. Also, I have been having shoulder issues and just went and got a cortisone shot to hopefully take care of this before I travel. It just wouldn't get better on it's own with lifting Mary Graham up so much. So, just more of God's grace and we praise him for being in the details of our life.

With Loftin being gone, it has been a little quieter around here. Lee overheard Loftin tell Lucy that she was in charge of taking care of Mary Graham while he was at camp and that if anyone made fun of her or called her ugly, she was to punch them. Seriously?? This is so precious to me on so many levels, and Lucy really seemed to love this new "responsibility." And although we do not condone "punching" other kids, I'm so glad God would show me the compassion in Loftin for his sister. And again I see his grace-things that He doesn't have to show me, but He does anyway.

But, also one of my prayers for the summer is for Lucy and MG to bond and play better together. Not that they haven't played together before, but being 6 and 3 is hard to find common ground at times. And they fight a good bit, I know that is reality of siblings. However,  this last week, they have discovered they love to dress up and put on shows (if you know me, putting on shows is all I did growing up-so I love it!). And of course there have been tears and arguments in between, but after praying about this, I'm able to see so much more of God's hand in my children's lives and participate in God's goodness, love and grace in these details.

I just finished reading The Praying Life by Paul Miller-I highly recommend it-it is the most clearly written book on prayer I have ever read. Prayer has always been such a struggle for me and always feeling like I'm falling behind and guilty that I'm not praying enough. And these last several months I have been asking myself how desperate am I for the Lord? When things are good, kids are behaving, life is just working and I'm floating along, I admit I'm really not desperate at all, I feel I can take care of things myself.

Here is what Miller says on this and prayer: "It took my seventeen years to realize I couldn't parent on my own. It was not a great spiritual insight, just a realistic observation. If I didn't pray deliberately and reflectively for members of my family everyday, they'd kill each other. I was incapable of getting inside their hearts. I was desperate. But even more, I couldn't change my self-confident heart....I came to realize I did my best parenting by prayer. I began to speak less to the kids and more to God."

"Incapable of getting inside their hearts." What freedom there is in this. Only God can reach their hearts.

I'm so thankful that God has brought me to some places desperation in this parenting thing.....at times He has striped me of myself and showed me I have no control, especially through MG's journey. How sweet that our Father has given us a way to participate in the lives of our children more deeply, to see his work and to see his grace lived out in there lives through prayer. I am full of sin and pray that I desperately see my need for Him. Throughout scripture people came to Jesus desperate and helpless-He wants us to. Miller says that this helplessness is what makes prayer work. We can't do life on our own, it's a constant reliance on Jesus, a constant conversation, and thankfully when we want to give up on praying, God looks at his Son and delights in our meandering prayers.  And above all, Christ loves us and prays for us.

"For Christ has entered, not into holy places made with hands, which are copies of the true things, but into heaven itself, now to appear in the presence of God on our behalf." Heb. 9:24

So thankful for a Savior who loves me and my helplessness, my weakness, my desperation.....only to better see His strength and His glory. And, I have seen amazing things through your prayers for Mary Graham, so thank you always for your faithfulness.

Will update more as the week goes on!