Home again

Jan 16, 2014 5:34 PM

Mary Graham and I are home!

Had perfect travel, a long layover in Atlanta but found chickfila and she did so well.

 She slept the whole Atlanta to bham flight and then woke up with a big smile as we were

 getting off the plane and said "that was so much fun!"

I'm so thankful for her little temperment God have her with all she has been through. That in itself 

makes this whole journey so much better.

She was sooo excited to see Loftin and Lucy, she just kept hugging them :)

She is still having some pain, and we are tired....But very thankful.

Thank you all for praying us through! God is so faithful every step.

Going home

Sorry these last two post were late....didn't get them copied from my caring bridge

Jan 15, 2014 8:40 PM

"Live in Christ....rooted and built up in him, strengthened in the faith as you were taught, and overflowing

 with thankfulness." Col 2:7

Going home tomorrow, yay!

MG slept all afternoon and played tonight, still hurting but is fast asleep now after meds.

The sweet veptr family from Indiana had their flight changed to tomorrow and they are on my same 

flight to Atlanta :) So glad to have someone in the airport and plane that just went through the exact same thing as us!

Dinner tonight at RMH was serve by a group of people who work for Coca-cola. They travel 

for meetings all over and meet at Ronald McDonald houses to volunteer. They were super nice and I 

met a sweet girl from New York who sat with me and MG and we talked for over an hour- made my night!

Love all the people God places in my path because of Mary Graham.

We pray for safe travels and continued healing for MG. Can't wait to see Loftin and Lucy, I 

have missed them so much! I don't think they missed us as they have been having fun with grandparents all week ;)

So grateful for you all praying and God's goodness. We will come back in 4-6 months for a longer

 stay for some more pulmonary testing. But for now I'm just thankful for today.

Better

MG and I slept all night, for the most part. Much better today and she's had X-rays and found the playroom. Already having a tea party. Her pain seems better, just staying on top with meds. 

The playroom and toys were enough to get her moving and walking (even with a huge IV on her foot ;) 

Your prayers are being heard. Our nurses and the child life specialists are so wonderful and make us feel at home here.

Waiting to see to doctors. Thanks for praying friends! She just told me she wants to go to the Waffle House ;) 

God goes before

A short version of our day:
MG: mommy stand by me
Me: ok
MG: no, don't look at me
MG: I want some yogurt, help me sit up
Me: ok
MG: no I don't want to sit up, I want some water
MG: I want to watch Barney
Me: ok
MG: no, I want to watch wiggles
Me: which one do you want to watch?
MG: mommy, stop it
;)

So, she's been pretty cranky, poor girl. The first 24 hours are always this way. Tomorrow should be better.

She's still on o2, but will probably be off when she moves around tomorrow. She hasn't slept much all day and seems to be in more pain than she usually is after an expansion. But we have made it through the day with Barney videos and French fries.

Lee headed back to Bham this afternoon. One huge blessing is another veptr mom I met and her little boy from Indiana. He had an expansion right after MG and they are in the room right next to us at RMH....it's so great to know someone since we are alone when we go back to the RMH tomorrow.

I'm very tired, but there is always such a relief when the surgery is over. Hoping for some good sleep tonight for the both of us. Continue to pray for her pain and recovery. Also, for things to go smoothly while we are solo.

A verse from Colossians I read last night. God is in the details and has it all together when things don't really seem all together. Thank you for praying! Will update tomorrow.

"He is before all things, and in him all things hold together." Col 1:17

All done

Mary Graham is all done. Dr. Campbell said she did fine and expansion went well. We are in recovery with her now, she's grumpy and in pain, on a little o2, but doing ok. Please continue to pray for recovery and pain. Thankful another surgery behind us and God's goodness.....thanks for praying!

Today

Monday pre op appointments at CHOP are always long. But things went well. Dr. Campbell was impressed with MG's walking and she actually gave him a high five, usually she doesn't want him to come within 10 feet of her ☺️. He was pleased that the veptr rods are holding her chest and spine stable for now.

We met three other veptr families while waiting, it's so encouraging to meet these families who travel from all over to come here and go through the same things we do.

Mary Graham is first case tomorrow and we have to be there at 6 am. So glad!

The Ronald McDonald house is such a blessing, we had a long day of traveling (and an incident with a very tacky lady on the airplane who apparent thinks a happy, giggly, talkative 2 year old disrupted her entire 1 hour flight, she even tattled to the pilot...but that is a story for another post).

When we arrived we got our room, with a small sitting area outside of it so we can hang out while she sleeps in our room. MG had lots of things to play with, they have a huge playroom and a local church served us dinner. It's very humbling to be served here.

MG went to bed and threw up in the night, but seemed ok today, she's just tired and seems more apprehensive this time. Keeps saying she's ready to go home. Please pray she feels good tomorrow and the surgery is smooth and successful and for her recovery.

We feel your prayers and appreciate all the texts and emails. So thankful for your faithfulness! Will update tomorrow.

About to walk to Bobby's burger palace, we have been wanting to try this supposedly great restaurant each time we have come up here, but it hadn't ever worked out. Looking forward to that, yum!

Prayer answered already

We are about to board in Birmingham and Lee called to check if we could get a room at Ronald McDonald and we are in!!!

Y'all this rarely happens that we get in the first day. What a blessing! Thanks for praying! 

This week

Jan 10, 2014 9:25 PM

We leave Sunday to flight up to Philly, pre op appointments on Monday 
and surgery for an expansion of MG's rods on Tuesday.

We appreciate your prayers so much and we don't take for granted
 what a blessing these last several months have been. We thank and praise 
God for her progress and no complications. But as another 
surgery approaches, fears start to creep in about infections and 
complications during and after surgery.
Please pray for these specifically.

And although it seems like "old hat" to do this over and over again. 
It never really gets easier. This trip Lee is going to fly back home tues 
night after the surgery and MG and I will stay the remainder 
of the time and hopefully fly home Thursday. I haven't ever done it solo. 
Please pray that we either get into the Ronald McDonald house or possibly 
the hospital allows us to stay an extra night, and all the logistics that go 
along with travel. And Loftin and Lucy who will be with grandparents. I know
 God will work out the details, He always does.

Thank you for continued prayers! Will update along the way....

Isaiah 40:11
He tends his flock like a shepherd, He gathers the lambs in his arms and 
carries them close to his heart; he gently leads those that have young.