Ryman is 3!

Here we are, April 24, 2016, day 1097 of life and somewhere around hour 26,328. To say this past year has been amazing when it comes to Ryman and her health is an understatement. (Hold on one second…knocking on wood) We haven’t had a hospital stay since Feb of last year, guys that’s over a year! This is such a huge deal. Ryman still gets monthly labs, sometimes a couple times a month depending on medication levels. Jeremy actually took her to labs on Wednesday and her numbers were all completely normal. Honestly they are probably better than ours. She is the funniest person I know and she makes Jeremy and I so proud every single day. Thank you God for this blessing, thank you for allowing us to be her parents. Thank you for giving us another day with her. We cherish each one of them and know that there are two sets of parents out there who didn’t get to celebrate a third birthday with their children this year. So today we celebrated Ryman but also the lives that ended and allowed Ryman to continue to grown into the smart, beautiful, full of life little girl that she is. Thank you all for loving us and loving her so well. I’ll leave you with some pictures from the past year. Happy 3rd Birthday our sweet Ryman Ali!

Ryman is 2

Ryman is 2! Her second birthday has come and gone but the celebration isn’t over yet. She started her birthday morning with getting her picc line pulled. We were on the fence about pulling it since her prograf was still undetectable and her liver numbers were on the high side of normal. After hours of debating and talking with her transplant doctor we decided that we should go ahead and pull this one before we end up with another blood infection. I felt like sticking her once a week would be better than a week in the hospital with a long course of IV antibiotics and a stick for every time they needed blood cultures. So we will repeat labs on Wednesday, praying they are great and we can start spacing out the labs. Tiffany also took Rye for some birthday ice cream and she was a big fan. Ryman turning 2 is a pretty big deal, but we decided to go ahead and make this the most amazing year yet and buy a new house! Yes, a new house. We close and move on Monday and will be moving into a house with 3 bedrooms, a garage and more space. No more sleeping in the living room for our family and friends. It’s pretty bitter sweet, we love our townhome, and it’s where we created so many memories. We got both dogs here, we house friends during times of need, we had many patio nights, I told Jeremy I was pregnant here, we brought Ryman home here, it’s her first nursery and I know I’m being a total sap right now but it’s crazy to think about leaving this place. I know we will create many more new memories and have lots of first at our new house though. So the weekend continued with Aunt Coco coming to help us finish up packing last night and got so much stuff done for me, she is a super star. She also painted Ryman’s toes and helped us celebrate Rye turning 2. Mexican food, a sombrero and a cupcake lead up to the first actual bath she has had in 2 months. It was a great birthday overall, or at least I would have taken that day for mine. Rye slept in and we had donuts this morning before Nicole had to head back to Florida. My dad and step-mom came down to visit and she had a blast trying to show off and was such a ham for them. This afternoon we went to a crawfish boil at our friend’s house and Ryman even tried one. We ended the night with another bath and she is out cold. I don’t’ think we could ask for a better birthday weekend. Well, except that we wish that Jeremy could be here too. Sara and Robert are coming to visit tomorrow so the celebreation will continue. I feel beyond blessed to me her momma and I can’t wait for this next year with her. I love you Ryman!

The birthday girl:

   

              


 

  

 

 

Our new home!

 

April 23rd

How is tomorrow April 23rd already? On the 23rd two years ago I went in for our ultrasound to check on Ryman since she wasn’t measuring where she should be. Little did I know that later that day I would be induced and at 12:01am on April 24, 2013 we would meet our little miracle. One year ago on the 23rd I received a phone call that Ryman could stop her Lovenox. If you remember those were the blood thinner shots that we had to give her twice a day in her thighs. The deep bruises are still slighlty there a year later. Those shots were no fun. I cried on the phone when the nurse told me that the surgeons were comfortable stopping them. We had expected a year of the shots and instead had to only do 7 months. I was so emotional and didn’t even realize that I would be. It was an awesome day early birthday present for Ryman. I am hoping tomorrow proves April 23rd to be Rye’s lucky day :). Labs tomorrow and potential of the PICC line coming out. Praying hard. 

Big girl news: Ryman has decided that she wants to pee in the potty every morning. We are on day 4 straight of her going in the morning. She says “yay, did it”. The first time I’ve heard her say anything resembling more than one word. Praising God for such a miracle.

Pig tails and cheese.  

Daddies home. 

Mommies glasses and keyboard dance time.

   

Oh you know, just going to drive my car.

   

  

Tiffany ask if she just pooped her pants, she got this face.   

Numbers Report

Well it looks like we will have the PIcc line for another week. This isn’t A bad thing, her liver numbers were amazing. However, her Prograf level was undetectable. Which means she was probably running for a little while without any Prograf in her system. We don’t want this because the risk of rejection increases when no immune suppression is on board. So we’re going up to 0.7 ML’s but staying at every other day. We will recheck next week before her fourth dose of this amount. So were looking at Thursday for her next check on numbers which means she could be getting her PICC line out and a bubble bath for her birthday! Yeah, I can’t believe it either, she’s going to be two next Friday!!! God is so good. Love you all and thank you for the continued prayers. 

Also prayers for Poppy who had knee surgery today and will have a long 4-5 week recovery. Ryman said Poppy, you can come let me sleep on you some more while you can’t walk :). As long as you aren’t wearing any stickers! (Funny story, after this picture they slept so hard that the name badge somehow   Got stuck to back of Ryman’s hair, we had a panic moment and now we laugh about it).

 

  We had a got to celebrate good liver numbers with Grandma Sherry (GG) and dinner tonight. This girl loves some Broccoli!     “Two.”   

Numbers

Ryman has labs today and they are pretty important ones. If all her numbers are good and her  Prograf levels are where they should be, she will be able to have her PICC line taken out! You know what that means, she can get a much need bath with bubbles and all. Since the line is her her leg and can’t get wet we have been doing sponge baths for two months. She is not a fan of getting them and I am not a fan of giving them. Even more exciting would be the fact that we wouldn’t have to get labs checked again for 4 weeks!! Guys, I don’t think we ever made it to monthly lab draws before. Or even if we did it was maybe one month. It’s exciting and scary at the same time. Scary because we are still only giving Ryman a 0.25mg dose of Prograf every 48 hours so her body can fight the histoplasmosis. One dose every other day! It’s amazing to think that she may not need to be as immune suppressed but so scary to think that her body at any moment could realize that her liver is not originally part of the body and begin to fight it, aka rejection. I’m holding on to the faith that God has a plan for Ryman and everything is going to be okay.  

 Yesterday was a year since my papaw Jay past. He was always making some kind of deal, owning an auction house, a store, a pawn shop, selling cars. You name it and he probably did it at some point in his life.  I am pretty sure he is up there making deals still :). Ryman has some amazing guardian angels. 

  

  

  

  

  

Ryman’s Story.

A story for Miriam.

My coworkers daughter loves reading about ryman and praying for her. It has been a long time since I have written a blog and I got to meet Miriam recently. I thought I would give her some new pictures and a story of what Ryman has been up to lately.

Ryman has been learning so much. She did have to get glasses about a month ago because her doctors discovered that she can’t see things close up very well. So the glasses will help her to see and allow her to focus on learning new things. She is learning so many new worlds too. My favorite new word she says is purple. She says it in the cutest way. She also says Eww and holds her nose when I ask her to take her diaper to the trash. I think she knows we laugh at her so she keeps doing it. She is such a ham and anytime we FaceTime someone she tries to be really silly and make them laugh. She waves at everyone and blows kisses to strangers. She isn’t shy at all. She had to stay in the hospital again last month because she had a fever which ended up being cause by pneumonia. She took lots of medicines that made her get better and yesterday we found out that the medicine did work and her lungs look great. She got her big cheeks again from the steroid medicine, we think she looks so cute with them. Especially with her new glasses. She is going to be 2 years old very soon. Such a big girl. We can’t wait to come play with you Mariam. Thank you for praying that Ryman feels better when she is sick. We love you. Goodnight, sweet dreams. 

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

  

Catching up.

I keep trying to sit down long enough to do an update but I feel like we have been nonstop since we got home. This is a good thing because it means Ryman is back to her happy self again. We were so happy that we got to be home for her second Christmas and she loved opening presents. We are doing weekly blood draws and all of Ryman’s liver numbers have been within the normal ranges, yippee. She still isn’t a fan of the new medicine so I just chance her around for a half hour giving her a little at a time. She is way more opinionated about the medications she doesn’t like. New Years and my 32nd birthday, wait I mean 23rd, was amazing. Ryman has started being more vocal and she is so silly. She loves being the center of attention and making us laugh. Her stink face is the best. Our year has started out with many blessings and we can’t wait for what 2015 has in store. We are so thankful for all the prayers and support that got us through this last hospital stay. You guys are truly amazing. God is so good. With so much love, the Little’s.
I have so many photos to catch us up!!

Christmas Miracle!

We’ll be home for Christmas!!!!!!!!!!

Check up.

We have had a great weekend at Julie and Corey’s. Ironically they have been in Nashville on a previously planned trip. We are headed to Georgetown this morning for labs and a checkup with Dr. Yazigi. Hoping for a good report. Ryman has done great and has really enjoyed her time out of the hospital since she feels so much better. Her favorite thing may have been bath time. It had been weeks since she had a real bath. We like that she can have one as well, she was a stinker.
Please say a prayer for Sawyer this morning, he is in surgery getting his new liver! I’m so excited for this family to join us on the other side of transplant. Please pray for the family who lost their child and made the decision to give life to others.

Frozen and happiness.

We are feeling pretty blessed right now. It has been a busy few days. I kept starting to update everyone and then the plan would change. So as of today this is where we are. Since the only culture to grow the bacteria last week was from Ryman’s PICC line they really wanted to not have that line in her. This morning had started with us thinking we were going to be discharged to go stay with Julie and Corey and finish two more weeks of the IV meds from there. However there had been some miscommunication about whether the bacteria had grown from the line or the peripheral stick. It was cleared up this morning that it was the draw from the line. This changed everything! So today was Ryman’s last day of the IV meds and they pulled her PICC line. The bacteria poses a bigger risk than not doing six weeks of the IV med. We feel confident in this decision as well since our infectious disease doctor at Vanderbilt had already said that he felt 4 weeks was sufficient but that 6 weeks wouldn’t hurt anything. Given that the histoplasmosis is not in her bowels and that she is clinically so much better, we are happy with this decision. We are slowly weaning her down off the hydrocortisone as well and started a new medication for the bacteria as a precaution. We will stay inpatient a few more days to make sure that the new oral medication, replacing the IV med, will not cause her prograf level to get too high. They will be able to do heel sticks for those labs. Once outpatient we can get labs at Childrens National if we need an actual stick. They originally wanted to do a scope but that is pending now. All this said we are unclear of how long they will want us to stay local. With the IV med the thought was 3 weeks, now that we aren’t doing that it may not be as long. We spent tonight watching Ryman’s first movie! Frozen, of course! She loved it and clapped at the end of let it go. We danced during the credits and really had such a great night. Feeling beyond blessed and so happy. I’m sure our room is filled with prayers for Ryman and for us because there is nothing but happiness here. Love you all!