Home

We are home and thankful this trip is behind us. Our travel was a bit crazy with someone finding a knife on the plane while boarding, evacuating and searching several passengers and delaying us for over an hour, crazy! We missed our connection in Atlanta, but got on a later flight and made it home right when Loftin and Lucy walked in the door. Thank you to my parents for keeping them-my dad was Mr. Mom this week driving my van all around :)

Thank you for praying....MG is sound asleep and I think I could sleep for days. Worn out but so glad we are home a little earlier than we thought. 

One more cute pic of mg at RMH. We will go back in April for revision surgery and ask that you pray against infection or complications from this surgery. Your texts, comments, emails, prayers carry us and we are grateful that you all walk along beside us. You have no idea how we feel our burden lifted at times. 

Happy Halloween! I have two Elsas and Davy Crockett that are super pumped about tomorrow night. 

They may not let us leave...

They may not let us leave....not because MG isn't doing well, but because they love her and don't want her to go ☺️.

The nurses come in and just chat with her for fun, she's invited them all to her birthday party (in March) and now she's having a good time in the playroom.

She had a good night, her back is hurting, but pain meds are helping. We will hopefully be discharged later today after X-rays and head back to RMH.

Lee was able to change his flight (props to delta for being accomadating) so we could all fly home together tomorrow. Praying things continue to go well. Thank you all for praying for us!

Quick and easy

MG is all done with surgery, in recovery now and she's downed two Popsicles, Graham crackers and apple juice. She's recovering really well. Dr. Campbell was able to do an expansion afterall (he pushed it to it's limit) and not the replacement. He often doesn't know what he's going to do until he gets in there. He said next time he will definitely do a replacement. So, we will be back in about 5 months for that. I trust Gods hand in all these decisions, even if this wasn't what we were expecting. Now she has a few more months to grow and get stronger. She's already been saying "I'm so brave." 



Thank you all for praying! Whew, we are so tired, but glad this one is done and pray for a good recovery the rest of the week. Looks like we may be home in time to trick or treat as a family 😊. Will update a little more later.

Josie and Xena

 

 

Mary Graham has had a great day-it started with a visit to see Dr. Campbell at 7:30 am this morning (that's 6:30 central-yawn) and he was so pleased to see how well she is doing. She slept ok last night, and coughed a lot, but seemed to feel good today. We saw anesthesia and the nurse listened to her and her lungs sound good, so they don't seem concerned and think she probably just has some congestion that is causing her cough. She barely took a nap because she was coughing a lot then also, so we played outside, in the playroom, watched movies, and played some more. I think she thinks the Ronald McDonald House is a fun vacation spot ;)

 

I'm so amazed throughout this day that she is so happy, loves going to the hospital, loves all the nurses and doctors, asking everyone "What's your name?"-God has brought her so far from the days of screaming the minute anyone looked at her, let alone touched her and I was always exhausted and sweating from any doctor visit. So, her sweet, joyful temperment makes such a difference.

 

MG made a sweet new friend, who also has veptr rods and is having surgery tomorrow also. Her name is Josie and she is 5 years old. She and MG ran around the waiting rooms and had a great time playing, the only time they were sad was when they sat next to each other getting blood work. These are some amazing kiddos and they are so brave. I love that she got to meet someone similar to herself and talking with other parents is so comforting.

 

Our day ended with a visit from Xena the pet therapy dog here at the RMH. Mary Graham got to see her last time we were here-she LOVES this little dog. We facetimed with Loftin and Lucy, then off to take a bath and get wiped down with special sanitary wipes and now she's asleep.

 

I was thinking back to on our way to the airport early yesterday morning, MG was looking out the window and the sun was coming up. She said, "look at the sky, God made the sky....God made the trees....God made the sun...and God made me." Then Lucy chimed in saying, "God made everything and the most important thing is you Mary Graham." She answered back, "yes, God made me."

Then of course the sweet moment ended and they went on to naming all the things God didn't really make, like cars and houses and clothes and on an on.

But, I love how she understands the truths of God and his promises, even in her little 3 year old mind. My prayer is that she always sees herself and "wonderfully and fearfully made."

 

We have been very encouraged today and felt your prayers. These trips are exhausting, but God is lifting us up. Please continue to pray for MG, for her cough to not cause complications tomorrow. For Dr. Campbell and the surgery (he is expanding one rod, replacing the other) and her recovery, which is always hard and for our fears and worries to be turned to trust.

 

  

Spiders and Albuterol

We are so thankful for today-we made it to Philly and had safe travels. Also, we got in the Ronald McDonald house-hooray! This is the third trip in a row that we have gotten in, such a blessing. MG gets so excite to be here. And her favorite therapy dog is coming tomorrow night.

We had dinner here tonight and the night activity was making spiders. Mary Graham was the only one who made a craft. It was a neat group of a premed students from University of Penn who hosted the activity and we met two other veptr families, one baby is 18 months old and they have been here a year, but are going home soon. It's always great connecting with these families, because we have all share similar journeys.

MG is in good spirits, she's has been coughing the past couple days (this seems to always happen right before surgery) so I'm giving her albuterol treatments along with her other asthma meds to help her lungs before surgery....well, this makes her a little hyper (right now she's jumping up and down in her pack in play ;) please pray that her lungs stay clear and no complications arise in surgery.

Thank you for praying, we have felt them today. Hoping to get a good night sleep and we will see Dr. Campbell early tomorrow morning. 

Oceans

I've really fallen behind on updating these days. We actually leave early tomorrow for Philly and MG is having surgery this Tuesday morning. We would really appreciate your prayers, she will have a rod replaced this time (there is no more room to expand) and Dr. C will possibly add a third. This will be a more invasive surgery since she got her rods and more nights in the hospital. But she has done so well with her past expansions, so we are hopeful she will recover well, she always surprises us how resilient she is after surgery. 

This trip just sort of snuck up on us and not quite ready for the emotional and physical exhaustion that lies ahead. Your prayers are so sustaining and we know our God is so faithful and we look back to all He has done for us and MG. She is doing wonderfully these days and she's excited to go to Philly, to ride an airplane and see Dr. Campbell-but she doesn't know she's having surgery. I'm so thankful she is not fearful at this time. 

The song "Oceans" by Hillsong is my new favorite and I feel like it perfectly describes my own fears and faith when we go on these trips, and really any time our faith is tested....

Your grace abounds in deepest waters

Your sovereign hand will be my guide

Where feet may fail and fear surrounds me

You've never failed, and you won't start now.

So I will call upon Your name

And keep my eyes above the waves

When Oceans rise

My soul will rest in Your embrace 

For I am yours and You are mine

It seems we have Oceans all around us, daily. Sometimes the waves are much bigger and when the oceans rise, we must rest His strength-he carries us. There is much more I could say, but I have got to pack! I've been such a procrastinator about this trip and fighting a stomach bug- boo :(

Please pray for safe travels, a room at Ronald Mcdonald House, for Loftin and Lucy, they are staying with my parents and the surgery and recovery for MG. We will be taking  Mary Graham's Elsa costume for Halloween-at least we will be at a place that caters to children ;).

Thank you for loving and praying for us! I will update soon!

Pictures

 A little behind on my blog these days.....
Mary Graham finally healed from her incisions in June, which took much  longer than it normally does. One wouldn't heal all the way so we had to do special dressings and antibiotics (didn't take any chances with an infection), so that made it tricky to swim this summer. But finally by the end of July into August,  just before school started, she was able to but on her bathing suit and we enjoyed the beach and lake until school started. We are so thankful to be able to go and enjoy these places with our families.

Here are some pics....

MG is just growing up

She loves the beach

These two have become best friends these days

We got to see Annie in a local theater and then meet her 

Chuckie Cheese (we only go once a year :/)

Lots of chickfila with friends

Fun time with Uncle Shep

Donuts :)

No this isn't the Carribean-have never seen the gulf look more beautiful

Hanging out with our cousins at the beach

Lucy turned 7 and Elsa came to celebrate!

First time MG has been able to get in the lake-she can't hold herself up yet in her lifejacket, but she's stronger than last summer for sure

Nice hair

Hanging out on the boat

Fishin

Heading off to 1st and 3rd grade

Lucy and Mary Hudson together again with Mrs. Morris this  year

Loftin takes on 3rd grade-we love Ms. Panaia

Fun school friends

School started back for MG too-she is loving preschool and learning so much!

This little chick will have another big surgery in two weeks-I really dread it. She will have a rod replaced, there is no more room to expand one of them, and possibly a third rod added. I will post more details soon and would appreciate your prayers, especially for protection from sickness leading up to the surgery. 

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!