Day 354 – DC bound

an does time fly by when you are healthy. It already time for Ryman’s Georgetown follow up. We are at the airport waiting for our flight, yes Ryman is actually going to fly with lots of people and not on her own private plane. Wish us luck,
I really wanted to take a second to say thank you. It’s been a while since we have written but I know that people are still praying for Ryman, I know this because we have had some and amazing, completely healthy months. I know her great health is nothing short of a miracle and looking at her you wouldn’t have a clue that she has had two liver transplants, that she fought so hard for this life she is living, that she came so close not experiencing it at all. She is blessed, we are blessed and she continues to bless others daily.
My grandma is nearing the end of his battle with cancer. He has always been one of the more positive examples of a man and a husband that I’ve had in my life. He never once saw me and didn’t tell me how beautiful I was and how much he loved me. He made you feel like you were the most special girl in the world. I shed tears not for him today but for those that he has loved. I know his love will never be forgotten but its hard to let go of him on flesh. We are selfish and we want his smile here with us, we want to hear his voice and be able to hold his hand. I’m sad that Ryman will not get to experience his amazing smile and see his eyes light up when she walks into the room. I do however think that God knew how much I would miss those things so he sent me Ryman. Her eyes light up when I walk into the room and her smile melts my heart.
Thank you all for prayers. Strength for my family and good results at Ryman’s follow up tomorrow.

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Day 336 – Happy Hearts

Our hearts are happy tonight.
We got to do dinner with two of Ryman’s geneticist from DC, Dr. Lanpher and Dr. Cusmano. They have played such a big part in why Ryman is with us today and why she is doing so well. They were in town for a conference and we couldn’t wait to see them. Its so crazy to think that it was the first time they had seen Ryman outside of the hospital and they saw her lots so how great it felt to sit and have dinner with them in Nashville.
We were also excited today because Ryman gets to stop two of her meds! No more magnesium until next labs to see how she does and no more Valcyte (anti-viral). Ryman also decided that today would be the day she would try to do things by herself. She was dipping her spoon into the baby food and trying to eat it and tonight she wouldn’t let me feed her the bottle. She is getting so big.

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6 months post transplant

Tonight, in about an hour or so actually, it will have been 6 months since Ryman headed back into the O.R. for her second transplant! This is such a big milestone that we have made it 6 months and only had one non transplant related hospital admission. Thank you for the prayers, I know so many still pray for her continued health. We have been living a pretty normal life lately. The meds, dropping Rye off with Amy, work and just life has been going smoothly. Well except a bad case of rotavirus (the worse smell ever) but we were able to keep her hydrated and out of the hospital. She also had an ear infection that we just finished antibiotics for. Those things are rough. So sorry to anyone whose kids have struggled with those. All in all we have been okay though. This past week Ryman started saying mama. Jeremy posted a video on Instagram if you want to see it. This little bit of a sound is a really big deal. Blessed is an understatement!
Not only are we 6 months post transplant but Ryman’s 1st birthday is quickly approaching. Its so crazy and exciting to think that she is almost 1 year old. God is so good.
We may get to stop another med this week and we head back to DC next month for her follow up. We are currently on monthly labs, woo hoo, and if DC goes well we may get to move to labs every 3 months! We found out that she also gets to try to switch to cows milk at 12 months which we weren’t expecting so we are happy about that. She is eating finger foods like crazy and wants to feed herself instead of eating from a spoon. She isn’t crawling or walking yet but she wants to really bad. She gets around really well in her walker now.
Thank you guys for loving on us and praying even when things are good.
So much love, Brandy

Let me catch up on some pictures:
Brigham excited that Ryman comes to hang out everyday, he ask to hold her. So cute.

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Day 285

Two hundred and eighty seven days ago it was a Monday evening and I was leaving my office. I guess Ryman and I actually left my office because she was still in my belly that evening. Little did I know that it would be a Monday 287 days later before I would be returning to work in the office. Today was great. Our dear friend Amy Is going to be keeping Ryman for us over the next few months. It made going back to work and leaving Ryman so much easier today. I was also welcomed back with a decorated cube. Balloons, streamers, signed banners and chocolate. I am so lucky to work with such thoughtful and amazing people. I hugged and kissed on Ryman lots this evening because I did miss her so much. But I feel like this is where we are suppose to be. Ryman going to Amy, me going to work, Jeremy playing bass and cooking us dinner (I am so lucky that he loves to cook), bath time, story time and some amazing cuddles. I can’t believe that in 80 days this little girl will be 1 year old. She is amazing and each day I thank God for giving me so many days with her. I can’t wait to continue to watch her grow and thrive. Thank you Amy for loving our sweet girl and helping me be able to go to work without crying :).

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Stuffed Animals!

I wanted to share the many stuffed animals that Ryman has gotten during this time. The picture below are the stuffed animals that she received from doctors and nurses. She recieved many others but I think its so amazing that this many came from doctors and nurses. Two owls from Dr. Fraizer, a Children’s Hospital bear from Dr. Cuzmano, a Barcelona bear from Dr. MacLeod that she got while at the genetics conference in Barcelona, a jelly cat bunny from Laura who was the genetics student who spent the first liver call day with us, a bear from the transplant nurses at Georgetown, a walrus from Chris, one of our favorite nurses at Children’s and her first one, the Ecmo lamb. Ecmo (yes, we named him Ecmo) was given to Ryman since she was an Ecmo patient, he has been with her every day and even sleeps in her crib with her, keeping an eye on her always. So thankful for all the love she received from those who cared for her medically. We know they are more than just doctors and nurses, they will always be a part of our lives and we are so grateful that Ryman was cared for by people who loved and cared for her so deeply. We love you guys and miss you!

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Day 275

We just wanted to say thanks to everyone who has watched the YouTube video or downloaded Ryman’s Song on iTunes. Even just sharing with friends and family, the video has over 10,000 views! Amazing! I hope that The Ryman Project has brought some awareness to the importance of organ donation. If you are not currently an organ donor then please consider registering.
You can do so at organdonor.gov, it has links to each states registry.
I think about Ryman’s donor angels so much and about the families who made the decision to give life. Without it I am not sure Ryman would be with us today.
If you haven’t gotten a chance to go watch the video or download the song if you would like to you can do so at:

The SONG is available to download on CD Baby or iTunes:

http://www.cdbaby.com/cd/brittanylane1

https://itunes.apple.com/us/album/rymans-song-feat.-ben-backus/id790174758?i=790174770

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Day 268

Ryman is growing so fast. Sometimes I stop and think, did she really have two liver transplants. In two days she will be 4 months post her second transplant. Four months isn’t that long ago so how does it already feel like a different life. I think God designed us in a way that we can go through something tramatic and just a few days, weeks, months later we are back to living life.
We grow, we change and we continue living. I remember thinking about it while a few of my friends were going through loosing their houses in the flood. I would get on twitter and facebook and everyone one was still living thier lives, I felt that way during Ryman’s journey too. It made me feel wierd to know that the world doesn’t stop just because you are going through something life changing. But our family, friends and so many more did stop and think of us.
Life changing moments happen everyday for everyone, it’s every decision we make. Not only can your decisions change your life but they change those you encounter. Who would have thought that a decision a doctor made a decade ago to go to Vanderbilt for his training gave him the skills to know what Ryman’s symptoms were.
Or that friends simply saying, stay another night at the hospital if you can and get some sleep would mean that we ask to stay and because of that Ryman got the nurse and doctor she did.
I am sure I am not the only one to think about things like this. The decision to change my major to Geology at almost the end of my 4th year in college lead me to meet a friend who later got me the job in Nashville where I decided to go hang out after work and met Jeremy.
It gives me chills sometimes to think about the smallest decision to go back to Red Door that night because my clothes fit the atmosphere better lead me to meet Jeremy.
God has definitly been more visable to me in the past 8 1/2 months but he has been in those smallest decisions guiding me. What feels like small decisions can be life changing, that’s almost scary to think.
Even though the worrld doesn’t stop, there have been so many of you who have stopped and prayed, called, text, visited, and just plain loved us.
Over the next few weeks I want to try to share some of those decisions that people made, that played such an important part in helping us continue living life.
I’ll start with a letter from a mom who is from my hometown in Morgantown, KY. Her letter said:
Brandy – Jeremy -
This is Jenel Brooks. I live in Morgantown, KY. I was asked to help in the benefit car show for Miss Ryman! My shop – New Life Taxidermy – donated a basket & gift certificate for the auction. My four year old daugter – Jenna – kept asking questions about the basket and the benefit. I tried to explain to her as best I could that the benifit was where people get together and give $ to people who need help. She was very concerned about Miss Ryman, but she was so puzzled about how a basket of stuff was going to help your baby girl get better. So, I told her that people were going to buy the baskets, and whoever was willing to give the most money would take the basket and the money would go to help you guys with whatever needs – she said she understood— Long story short, Jenna went to her room on her own and drew these pictures – Then, she opened her piggy bank and took out 2 one dollar bills. She asked me if it would be ok for her to send $2.00 to Baby Ryman to help her feel better. Tears in my eyes. So, I know $2.00 is nothing, but to my 4 year old Jenna, it’s a lot. I had to send this so you guys would know even the smallest of kids wants to help your baby girl! She prays (we pray) for Ryman to get well each day. God be with you!

Thank you Jennel and Jenna! We are so grateful and we hope that someday Ryman might be able to take $2 from her piggy bank and help a child feel better. Hers has definitely worked!
Love, The Little’s

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The Ryman Project

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Jeremy and I are very excited to tell you all about The Ryman Project.

A few weeks after Ryman was born I received a message from Brittnay Lane, a singer-songwriter here in Nashville, she had been following Ryman’s story through a mutual friend and had been praying for Ryman and our family. When we returned back to Nashville she quickly became one of our close friends and one of the people we call on to come hang out with Ryman. One night she came to watch Ryman so Jeremy and I could go to dinner and get some us time, which is very important for us to do, measuring out medicine together does not count as us time. Before we left she told us how much her life had been touched by Ryman and how much she had fallen in love with Ryman and her story. So much so that she had written a song for her and wanted to use her non-profit called Inspire Hope to do a project called The Ryman Project. We were so touched and so excited for the vision she had. Over the last 8 months we have watched it unfold piece by piece, yet another testimony to God’s faithfulness.

Inspire Hope is all about people using the gifts and talents that God has given them to help others. She has made some amazing things happen for people around the world through several projects completed through Inspire Hope. The Ryman Project is going to be one of those. She pulled together so many talented people who wanted to be a part of Ryman’s story in any way they could.
An amazingly talented producer, engineer, many artist and musicians, a videographer, a graphic designer, and the list goes on. They all wanted to help and be a part of making a difference through recording the song, Ryman’s Song, and creating a video for the world to see and get a chance to witness the miracles and blessings that God has given us. Jeremy even got to play bass on it while on one of his short visits back to Nashville during our long DC stay.

The video is on YouTube and the song can be purchased on iTunes & CD Baby. All proceeds will go to Ryman’s fund. We have been so blessed in that our financial need is not that great and we are really hoping to be able to use the proceeds to help in research of Urea Cycle Disorders, to help other families going through transplant and to help raise awareness of the importance of organ donation!

Help us spread the word of Ryman and what God has done and will continue to do through her! Share with your friends and family on Twitter, Facebook, Instagram or just show them yourself.

You Can Watch the VIDEO Here:

The SONG is available to download on CD Baby or iTunes:

http://www.cdbaby.com/cd/brittanylane1

https://itunes.apple.com/us/album/rymans-song-feat.-ben-backus/id790174758?i=790174770

We can’t thank all of these folks enough for their time, love and passion that went into making this happen. Brittany Lane, Matt Campbell, Ben Boutwell, Ben Backus, Nathan Dantzler, Amy Vaughan, Dan Needham, Bradon Hood, Jeremy Little, Abbey Blake and the entire team who sang their hearts out for our little girl. To all those who help in any way at all and to you who will make the decision to download the song or pass along the video, we love you all!

Day 245 – Merry Christmas

We had the best Christmas present this year, Ryman was home with us! When we were waiting for transplant we were not sure we would be home with her for Christmas. We feel beyond blessed for this, I never want to take for granted how lucky we are to be here with her and not in the hospital or not to have her at all. We have received many cards and gifts and continued prayers. We feel them every day. Yesterday Ryman turned 8 months old, the 18th was three months since the second transplant and everyday we still feel the prayers for her and for us. Thank you to everyone, we hope your Christmas was just as blessed. So much love! -The Little’s

Merry Christmas!

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Day 236

Ryman has an appointment in the morning do prayers that they can get blood on the first stick. I know ill actually miss the picc line when we have to stick her but she is loving bath time. Jeremy flew to NY tonight and will be playing on The View tomorrow with Danielle Bradbery so if your able to catch it I think he should be playing around 10:40 CST. I think Ryman will be excited to see her daddy on TV.
She got lots of love from nanny and poppy and aunt coco this weekend and now aunt Sara and uncle Robert are here spoiling her. So I don’t have to bare the stick alone tomorrow. Wish us luck, if labs are good tomorrow we should be able to start going every other week!

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