Team Ryman Shirt Options

We have gotten many text and messages about other sizes and styles so we have new options available. If you have already signed up for a different size or syle and would like to change just text or email me and I can change it for you.

Adult Size Shirts:

http://www.customink.com/signup/a5efmkxd

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Youth Size Shirts:

http://www.customink.com/signup/a72h0i9c

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Toddler Size Shirts:

http://www.customink.com/signup/a7239hq8

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Black on Black V-Neck Shirts:

http://www.customink.com/signup/a725gce7

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Onesie:

http://www.customink.com/signup/a73byz7g

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Liver Life Walk & Team Ryman Shirts

On September 27th we will be participating in the Liver Life Walk Nashville at Percy Warner Park where steeplechase is held. Ryman is the 2014 LIVEr Life Walk Champion. The walk starts at 9am with registration at 8:30am. The walk is free but you can donate to our team if you would like. Sign up or donate to Team Ryman at http://go.liverfoundation.org/goto/team_ryman
There is a join team button at the bottom above the list of team members. You can donate by going to the main page and selecting donate and choosing a member of team Ryman to donate too. My personal page is http://go.liverfoundation.org/goto/team_ryman_cps1
Shirts for the walk are ready and you can buy one even if you aren’t able to make the walk. We can ship shirts out as soon as they get in or if you are participating you can get them the morning of if I don’t see you before then. Shirts are $20 with a percentage of sales going to our team for the American Liver Foundation Nashville. Orders will be taken until the September 10th. You can paypal money to jeremylittle1@gmail.com for those who want to pay that way or you can give us a check or cash when we see you. Or put it in the mail: 8106 Stacy Square Ct Nashville, TN 37221. The more we sell the larger percentage we will be able to donate! If you think you may need a different size than is available let us know and we can look into options. Also, This is an American Apparel shirt which is great material but they tend to run a little on the small side so take that into account when selecting your size. Big thank you goes out to Corey Snyder for designing this amazing shirt and Nicole DiPatrizio Eggers for hooking us up at custom ink!
Corey did such an unbelievable job capturing Ryman’s story in one graphic! If you ever need someone to design something for you, he is the man!
The Nashville skyline and the DC skyline are merged together to show Ryman’s cross country ventures as well as represent the hospitals / teams in each city since we love them both.
Mixed in with the clouds are the 2 livers Rye received, they were a gift from heaven and we wanted to pay respect to the donors and their families in some way. On the bottom border is every bible verse quoted on the blog. At the very bottom there is a propeller for Rye’s first airplane ride. Finally there are some cool crab claws to represent Maryland, because you know, thats what Maryland does.
Join us in raising awareness and funds for reasearch, education and advocacy for those affected by liver-related diseases. Ryman’s doctors have recorded grants from the ALF and we want to help them continue to do so! Thank you everyone who has already signed up or donated!!

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Transplantiversary!

It is really hard to even wrap my mind around where we were this time last year. Ryman was Day 1 Post Transplant! We met Katie for the first time on this day last year also. She has been such an amazing support through all of this. Her daughter also has CPS1 and was transplanted at Georgetown at almost the same age as Ryman was. She is my go to for crazy transplant questions and even random, ‘so did L go through a stage where she poked at her belly button and pushed on her scar lots’, questions. Today my worries were if Ryman needed to poop and are her teeth getting stained from the iron supplements… man we have come a long way in a year. I watched Ryman sing and dance today and thought of how amazing our God is that she is with us. When I think of this I will be honest, it’s hard to think of the children who left this world and gave Ryman the chance to live. It’s hard not to ask, why? Yesterday and today are such emotionally exhausting days. They are days of joy. Yesterday was the anniversary of the ‘call’ and today was the anniversary of when she actually got the new liver. They are days full of thankfulness and happiness that the first year is behind us and Ryman is still here with us. They are days of feeling heavy hearted for the family who are having the first anniversary of their child’s death and the thought that we will repeat these emotions on Sept 18 when it’s the anniversary of Ryman’s second transplant. It is so strange to be pulled in such opposite directions of emotion. Happiness and sorrow. I hope that the families can find even an ounce of happiness in the thought that their child’s life ended with more meaning than most of us will leave this earth with. If you aren’t an organ donor please consider it. Each day, an average of 79 people receive organ transplants. However, an average of 18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs. People of every age give and receive organ donations. In 2013, 28,953 people received organ transplants. Below is the number of recipients by age group followed by the number who received organs from deceased and living donors:
o 1 Year Old: 260 (241 deceased, 19 living donors)
o 1 – 5 Years: 545 (437 deceased, 108 living donors)
o 6 – 10 Years: 292 (228 deceased, 64 living donors)
o 11 – 17 Years: 721 (591 deceased, 130 living donors)
o 18 – 34 Years: 3,081 (1,983 deceased, 1,098 living donors)
o 35 – 49 Years: 6,310 (4,699 deceased, 1.611 living donors)
o 50 – 64 Years: 12,674 (10,516 deceased, 2,158 living donors)
o 65+ Years: 5,070 (4,271 deceased, 799 living donors)

I currently know many families whose children are waiting on transplants Even a little boy whose mom is on the hunt for a living kidney donor since he will wait forever on the list with the possibility of never getting one in time. If you have any questions feel free to ask, there are many misconceptions about organ donation. It’s an amazing and beautiful thing these two children have done for our Ryman. I want her to never forget the lives that she carries with her daily.

So much love, B

Brandy Little, PG, CFM, GISP
GIS Analyst
AMEC Environment & Infrastructure
Nashville, TN
Office: (615) 333-0630 ext. 7072
Cell : (615) 974-7077
http://www.amec.com
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Alkaline Phosphate

That dang Alkaline Phosphate is finally coming down. Monday was down to 2800 from >4555, yesterday was 2100. Slowly but surely. AST and ALT were up a bit on Monday but are coming down again. I think even our doctors had a sigh of relief when the Alkaline Phosphate came down Monday. They were in the process of referring us to the hematology team to make sure we weren’t dealing with something more than a virus and infection.
We have 6 more days of IV antibiotics so my prayers are that her levels are normal enough by then to go to at least weekly labs since the picc has to go. However I did notice tonight after flushing her line the catheter site looks a little red. So I emailed a picture and will hear from them tomorrow on whether I need to take her in to have it checked. Better to be super cautious. She doesn’t have a fever so I’m thinking it may be okay. It’s been a long couple weeks and the exhaustion has taken a toll on me. I typed most of this last night but fell asleep before I hit publish :),
Prayers for continued healing and for no new line infections.

Ryman is going to a new nanny. She has another play mate there named Riley. Ryman is teaching her new trick.

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Home again!

Sorry for the late update. We gt to come come on Sunday! We had some amazing nurses this stay and made some new friends who loved on Ryman so well. I will be administering IV antibiotics at home for the next 10 days. Total Nurse Brandy. Ryman’s numbers were a little crazy yesterday but the Alk phos was down to 2500 so I’m hoping the others will level back out when that is back to normal.

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Another night.

We thought we were going home today but they wanted one more negative culture. So praying for tomorrow. Ryman was a little bi-polar today. Either extremely happy and trying to make us laugh or super fussy and signing finished to everything we offered. She mainly wanted two things, food and the iPad. Oh boy. She is definitely getting some of those steroid cheeks back. Our little nugget again. Patti is here helping so I get to sleep in my bed with two awesome pugs tonight. Jeremy is in Baltimore and got to hang with Julie and Corey tonight, miss those two like crazy.
Prayers for Matthew and Braden who are both at Georgetown prepping fit transplant. One will get the transplant and one will not. Prayers for the chaos and emotions of what the night may bring. Goodnight to all.

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Klebsiella pneumoniae

We found out today that it isn’t a picc line infection. It’s actually a bacteria that is found in your gut called Klebsiella pneumoniae and if you are immune suppressed and you have lots of diarrhea it can get into your bloodstream and cause a blood infection. So not great but we now know that it isn’t the line. The good news is the antibiotic used to treat it is the one she has already been on for two days. The culture from yesterday hasn’t had any growth yet. So if it still has no growth tomorrow morning then we may get to go home tomorrow on IV antibiotics!

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Our downtown apartment.

We finally got a room at around 1pm today. Ryman’s ultrasound came back normal. No blockages. They took blood cultures from the line to see if anything grows. They will not pull the line unless something major comes back. We are still unsure if the vomiting and fever are related to the Norovirus or if Ryman has picked up another virus. Her temp went up to 104.1 this morning but has stayed lower after the second dose of Tylenol. Not sure how long they will want to watch her. Thank you everyone for the continued prayers that Ryman can kick this stuff.
So much love, B.

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Hospital.

We are currently admitted to Vanderbilt. Around 9pm Ryman started vomiting and had a fever. It ended up spiking and went to 103.4. With her having the picc line we have to go straight to the ER since you risk having a line blood infection. They started IV fluids and antibiotics. We just finished the ultrasound too. Her labs are a little wacky. We are thinking this is still just the Norovirus since her immunosuppression level was so high today. We will update as we know more. Prayers please.