THE RESULTS

Well…… Like we expected we are in liver rejection.  Starting IV steroids in the next few minutes.  They believe we caught this very early and that we should have a handle on it in the next 3 days.  This is all subject to change if Rye’s system plays hard to get.   We appreciate all y’alls calls and text and willingness to help.  Brandy’s sister and my sister are here helping tonight.  We’ll keep y’all posted with updates.  

 

Thanks

-Jeremy

Liver Biopsy – update

Ryman is now in a room. Everything went great. They were able to place a picc line too. She is pretty sleepy and grumpy from the anesthesia. She is able to have clear liquids and hoping she can eat soon. Still no word on the preliminary results of the biopsy but should hear something within a couple hours. She is watching bubble guppies and I’m pretty sure she thinks they are actually here.

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463 days biopsy time

First off it’s really weird to back in a hospital.  Nice reminder how lucky we have been during the past 10 months.  Rye has been a champ and we have been super blessed with very little to no problems.  We even started to treat her like a normal kid.  This is just a reminder to us that she was a very sick little girl not that long ago.    

The last 2 days we have had some bad lab numbers.   Due to this we are getting admitted to Vanderbilt to do a liver biopsy.  The team believes that we are in acute liver rejections.  Yes this sounds very very scary but we are told that it’s fairly common within first year of transplant.  If it is rejection we will spend the next 5-8 days admitted so we can get IV steroids.  We hope to have a 100% diagnosis by around 5 today.  We are expecting lots of labs over the next few weeks so we are having a Picc line put back in.  BOOOOOOOOOOO.  This sucks but we know it’s best for getting usable samples and keeping Rye safe.  

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We’ll keep y’all posted.  

-Jeremy

14 months and 6 days old.

Thank You God for giving us this day! Today is the day, Ryman is officially walking! I really can’t even put into words the emotions we are feeling. We are proud, joyful, feeling so blessed, amazed and just so so excited. We posted videos on Instagram and ill post on Facebook if you want to see her in action. Love you all.

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Ryman at the Ryman

I am headed to Mexico to hang out with Jeremy! He is already there for work, I’m pretty darn excited to get to him, even though I missed my flight. Apparently American Airlines isn’t as efficient as Southwest. Only two people checking people in and multiple people missed the flight. I’m not going to let that get me down. Maybe it happened for a reason. Like now I have time to write a post and share some amazing pictures. We have always wanted to have Ryman’s one year pictures taken at the Ryman. Thanks to Matt Singleton and Lee Steffen for making it possible. I am going to miss her so much while I am fine. Thank you Amy and Wes for taking care of Ryman for us, it helps me feel so at ease. I did shed a couple tears this morning, but am so looking forward to getting some time with Jeremy.

Here it is:
Ryman’s debut at The Ryman.

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Happy Father’s Day!

I think he has taken more pictures with her than he has with me in the entire eight years we have known each other. I love him for it! I could not ask for a better husband for me or a better father for Ryman. He loves us so well and shows it daily. We love you so much! Happy Fathers Day Jeremy! We are so lucky and blessed to have you!

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Sawyer Eli Calton

Hi friends. Sawyer, the little boy born and admitted to Vandy the same week as Ryman who also has CPS1 is preparing for his liver transplant. Sawyer has been managed by his diet for the past year, but now he is starting to show signs that his body is needing more protein then he can actually eat. Too much protein means risk of elevated ammonia levels and too little means the risk of not growing. Your body just can’t thrive and grow without enough protein. Please like his page and follow his journey at Sawyer’s Journey. They are having a golf tournament to help raise funds. The family will be traveling to Cincinnati for his transplant and will have to stay there for a while after. Just as we did in DC. Sawyers mom and I have become friends and she has been someone for me to talk too. A mom who knows exactly what I mean when I say words like Citrulline, Cyclinex, and Prophree. I really don’t think its anything other than God when you have two children almost the same exact age with such a rare disorder at the same hospital. I mean, guys, the chances of that happening ever again are really really slim. If you can’t help out or attend I plan on setting up a donation site soon. Sawyer already has lots of hospital bills and the medication he has to have is very expensive. The family will need money for food, travel and lodging as well. As
we know, Ryman’s transplants were over a million dollars. So we can assume one is around the $500,000 range. Insurance will cover a percentage but they will be responsible for a pretty big chunk of that. A family should not have to stress about finances when dealing with a sick child. Please help out if you can. Prayers are greatly appreciated! I will let you know once I get the site set up if you would like to donate. Much love, B.
Sawyer Eli Calton and Ryman Ali Little

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Dear Ryman.

Dear Ryman,

Hi, this is your mom, you are a handful.
However, you are pretty dang awesome and I love watching you grow. I really can’t believe that you are 1 and that you are so close to being 13 months old. You had a great 1st birthday party, although I wasn’t feeling to great from what I think was some sort of bug you passed me. I think there will be many more of those in my future and you know what, I don’t even care. You tried eating the cake without using your hands, I loved the blue icing but your dad says you look like a clown in the pictures. Sorry about that. Since your first birthday you have been learning so much. You started crawling, which is such a big deal. Your aunt Sara starting crying in public when she saw the video I posted on Instagram. I wonder if Instagram will still exist when you are old enough to read and understand this? You might hate us for posting so many pictures of you for the world too see, we just want everyone else to know how awesome you are. You have also been pulling yourself up on things and standing. You say uh-oh very clearly. You know what it means but you create situations in which to say it. Holding your sippy cup out off the highchair, looking at me while I say no and then dropping it on the floor anyway is not the correct use of uh-oh. Uh-oh’s are for when you don’t do things on purpose. We think you are saying doggie and kitty cat, you love petting the dogs (or me on occasion) and saying good girl. You give the best kisses, sometimes to the dogs and keeping you away from potentially sick strangers is becoming more difficult because you are always waving at them. People are just drawn to you and your smile brightens their day. I can’t go anywhere without people trying to stop and talk to you or someone telling me that you are beautiful. It’s hard not to say, you would think she was even more precious if you knew her and her strength. I love that you will be able to share your story with others, I hope you know that you are a very special little girl. Special in the most amazing way, you are God’s gift to us. Your dad and I get to be your parents. How lucky are we? If you have sit down to read this thing your parents wrote about you when you were born and you are wondering why we slacked off after we got home from DC we can explain. It wasn’t because you didn’t do things we wanted to share with everyone. It wasn’t because we didn’t have time. It was because in this day to day world, we forget that you aren’t just a ‘normal’ kid. We forget in the sense that we don’t feel like there is anything to be worried about. God has shown us what great faith and prayer can do. We are not going to live in fear of the what ifs. We are going to live in the now. No need to worry about what isn’t. We will try to enjoy every day we are alive to the fullest. We will stumble but this one thing I can promise you, we will love you unconditionally always.

Your mom.

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Day 365 – Ryman’s 1st Birthday

It has come and almost gone now, Ryman’s first birthday! Her aunt Sara
and uncle Robert came to spend the day with us and I took off work to celebrate with her. She woke me up this morning by throwing her pacifier out of the crib and saying uh oh. I love listening to her in the mornings and watching her play in her crib on the monitor. It’s simply amazing at how much she is learning. She started the day with breakfast and then it was sugar time. A cupcake with icing and sprinkles to be exact. She didn’t know what to think when she first touched it and tried to eat the candle but as soon as she had a taste it was game over. Icing was everywhere and she officially became a sugar addict and she earned herself a morning bath. We got her dressed up and took her to the park to get a couple pictures in her cute, my first birthday onesie. When we got home I expected that she would take a nap but the sugar took over and she didn’t want to nap at all today.
We so got some amazing birthday news, DC called and everything looked great and they want us to stop the Lovenox blood thinner shots!!! STOP!!!i didn’t expect to get emotional but I cried when they told me to stop. I am so happy to not have to give my big girl any more shots!! It was out of love, to keep her safe and healthy, but man was it getting hard.
We also get to celebrate our great friends Jessica and Aaron. They get married tomorrow! So excited for them!
This was an amazing day to be followed up by another amazing day!

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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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