Amelia's Kidney Journey

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Amelia's Blog

11/8/2020

These few weeks have been eventful. We went trick or treating to the best of our abilities with Covid. We were only able to make it to a few places but generally did good. I was feeling better on Halloween so I dressed up as Indiana Jones. I had a whip and everything. Plus we got to watch many Halloween movies. Like we re-watched ‘Hocus Pocus’ again, a movie that I’ve always enjoyed.

For our trick or treaters we created a mummy candy slide. We got it all decorated and had signs up to direct the kids to make Halloween noises to get candy. It was super fun!

One day we were able to go to the Corn maze as a family. I walked around with my sister, We were able to make it to the end and top of the maze. Basically seeing all the dead end and paths. It got cold but it was super fun.

I got to go to my Aunt’s house again to make more food and different crafts. We had lots of fun, we always do. I really enjoy joining her for the day just to hang out, because she never focuses on my Kidney Stuff. This last visit we made really good caramel apples which I didn’t get a picture of before we ate them all. But the time before we watercolor painted, which was super fun! She’s always been super talented. I learned/learn a lot of new things every time.

This is my watercolor artwork

Last Friday we went on a super long drive to Nebo loop. We wanted to get out of the house and see the Fall leaves before winter. We drove for like 5 hours straight. I was able to get through the jumbled mess of my Broadway music playlist. (I have six different musicals in said playlist. Plus one random song from another musical.) We stopped in the middle for a picnic including hot dogs and s’mores. We had lots of fun hanging out as a family and sharing jokes.

Kidney Update.

These last few weeks I haven’t been feeling as well, still able to do things just not as much. Everything has still been about the same, just not as good of a week. We had kidney clinic last week where they talked about Dialysis, even when I don’t need it at this point in time. They seemed like they didn’t really mind that I don’t understand some of the things they are talking about. It was kinda confusing. We asked for papers to help me understand a few things, so we are waiting for those. I’m hoping that I get a kidney before I need Dialysis. The types of Dialysis sound intimidating. They make it sound like Dialysis is getting closer (When its not) and it’s not a idea I like. In reality, my labs were a little better than they have been. I’ve been able to drink all of my water and (mostly) eat.

Potato Potato Corner

Potato Potato quote: ” Don’t store all your sadness in starch , It’s okay to be sad and no-one can stop you. Its okay to show your feelings“

Potato Potato Pun: “ What do you call a red potato that tries to pass as a tomato? An imi-tater!“

In the last picture is a knitting set, that I received as a gift. We aren’t sure who it is from, but Thank You! We are going to be getting different patterns and stitches to learn. I really excited to do this, another thing to add to my ever growing list of crafts I can do. Thank You again.

I miss you Grandma… I love you.

~Amelia

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November 8, 2020
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feelings

3 Tumultuous Weeks

It has been quite a whirlwind of 3 weeks since my last post. What was going to be simple with a kidney clinic visit and then Halloween, turned all upside down when Amelia’s grandma passed away. We had a lot to do with that but we still managed to pull off our Halloween celebration.

It was not quite the same for Halloween, with all of the COVID Beast’s doing, but the kids still managed to get some Trick or Treating in, and they got to wear their costumes. We stayed home a lot and watch a whole potload of Halloween movies this year. We also decorated our house more than we have for a few years. We got out the big spider web and all of the blow up characters along with the reaper. He is always there. We also made some fun signs and blocked off the stairway so the kids couldn’t come to the door to trick or treat. We made a slide from PVC pipe that went the length of our handrail and delivered candy to the kids at the bottom. Our signs directed the kids to howl like a werewolf, or cackle like a witch to get candy. Leatha had great fun listening to kids come again and again and do different things for candy.

We also made it to a corn maze as a family. We had fun going around the maze and the kids liked the slides and stuff there. Amelia was able to walk around quite a bit. She went with Leatha and made it all the way to the top of the corn maze and back. She did really well.

On Friday before Halloween we went for a drive up over the Nebo loop just to decompress after Grandmas funeral. It was nice just to drive in the mountains. We stopped and roasted hot dogs for dinner and just had a good time being outside and together.

We did finally have kidney clinic on the 3rd after much argument with them. We are still having issues with getting things communicated in a clear manner. They scared Amelia with talks of dialysis and getting ready for that, much of which is unnecessary at this time. We are working all of this out with her new medication changes and her generally downhill direction. She hasn’t been feeling well overall. Not sick per say, but just feeling crummy and having less energy. They are working on her medications and adjusting them now.

Amelia is still on the transplant list, and still waiting. We will see what comes next and keep trying to keep her as normal as possible.

Still coming to you live, 139 days into the new kidney journey

-Justin

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November 8, 2020
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Amelia's Blog

10/18/2020

Not a lot happened these last few weeks. I’ve been busy with school and able to focus on different things to mess around with. This week wasn’t a good week. I haven’t been feeling good and my labs show it. I’ve been super tired too. I’m a little better now, even if I was on antibiotics for a week. BUT! I didn’t have to go to the hospital! So that’s a big plus. They increased a few of my medications, so that is also contributing to my…. Unwellness. I did get a new blood pressure monitor that makes it very simple to take it on my own. It’s super helpful, when I remember to do it.

I baked a lot last week. I really enjoy baking, I find it fun, challenging, and…..Boredom relieving. That being said, I made Spooky Cupcakes!! I made them out of red velvet cake and I was super careful with decorations. I used fondant to make a spider, cobweb(?), and a fly trapped in the cobweb. All homemade by yours truly. (And Potato Potato)

I’m super excited for Halloween! Even with the Covid restrictions. Now that I’m old enough this year I get to watch a whole plethora worth of new (For me) scary/spooky movies. We usually make our own costumes too, so even if we aren’t leaving the house we’re gonna be dressed up. I’m not sure what mine is gonna be yet, we’ll get there.

I was able to go to a Church Youth activity….Corn Mazes! My first time in weeks leaving for a youth activity. It was super interesting, I went to my first “Haunted” one. It was super funny listening and watching everyone scream, I didn’t scream (but that doesn’t matter). I was still spooked. I had a great time hanging out with my brother and other kids around my age, masks and all. yay. covid.

This week was also the end of term one for school, woo. I did good for the most part (?????) and I decided that 8th grade is hard. Especially when for my entire 7th grade year I was Hospital-homeschooled and got easy A’s because I already knew the material! I did okay, this term at least. I passed. Next term hopefully will be better. I did amazing in Health though, soooooooooo……….

Kidney Update

SO! in the last month my kidney labs have gotten really………………mean/grumpy/cranky (????) The results have increased to a point where they were starting to talk about Dialysis. I REEEEEAAAAALLLLLLLLLLY don’t like that idea. I don’t like thinking that I’m so close to that part. I really hope I can get my Transplant surgery( Even if I don’t like surgery) before Dialysis. I have Kidney clinic next week, so we’re gonna hear from the doctors if I have time to spare until Dialysis. As far as we know I am actively on the list waiting for a new kidney, with no live donors. Which is Okay! It’s just really intimidating.

Potato Potato Corner

Potato Potato Quote: “Just because you grow underground doesn’t mean your not beautiful. Just like a potato , you can pick yourself up and wash off that dirt to get a new start.”

Potato Potato Pun: “Which side dish does Dr. Frankenstein bring to Thanksgiving dinner?
Monster mash potatoes.”

~Amelia

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October 18, 2020
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Activities

Alive in a Whirlwind…

I can’t believe that as I sit here, there are only 13 days left until Halloween! October is more than half over and over here has been crazy.

Amelia has been doing ok, but going downhill. We can see it even if she can’t. Her appetite has gotten to the point where we are begging her to eat something so that she can be healthy, but she struggles. We keep trying different things hoping that something will taste good to her. Sometimes we score the home run and she chows down, sometimes it takes a while to finish.

Some of her kidney labs have been all over the place lately. The doctors are trying to figure out the best therapy for her, but we are not near the point of dialysis yet. They plan on talking more about that at clinic on Tuesday the 20th. I really hope that we can avoid dialysis…that was a chore before and will be again.

On another note, they were encouraged last week when her name actually showed up on the list for an available kidney. She was far down, like number 13 on the list, but she was still there, so we keep our fingers crossed. All things will be in the time that they are supposed to.

School has been going well, all of the kids are nearing the end of the term. This term at home has had its ups and downs, but we have most of it finally figured out. We will be on to the next term starting on the 26th.

We have tried to get Amelia out a bit this month, we have gone on some drives and hanging out in the mountains away from everyone. We are still keeping her pretty isolated. She is keeping busy reading and baking. She is becoming a darn good baker. She made cupcakes the other day from scratch, with cream cheese icing, and then spent a lot of time making individual spiders and flies out of fondant. They looked really good. I told her that she will have to be on that show she likes, Nailed It. She could win.

In general, we are just hanging out and waiting for a kidney to show up and for the Covid-Beast to be vanquished. We will make this. We are all continually grateful for all of the prayers and thoughts from all of you out there. We could not do this without your support and the support from Heaven. We will always be grateful for the power of combined faith and the blessings that can be received from it.

Thank you all again.

Still coming to you live, 118 days into this new kidney journey in the year of Corona,

-Justin

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October 18, 2020
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Amelia's Blog

A New Cat!

Over the last week, School has been going good. I’ve enjoyed most of my classes and have been keeping up on my school work. We had parent teacher conferences yesterday and I’m getting really good grades. I am doing great at distance learning I make sure I sign into my classes everyday. So far my best subjects are Health (obviously) , English, and Art (We’ve been doing shading!). I was actually able to get school pictures done this year without having to go to the Hospital right after. ‘Cause last year for both original and retakes, I was sick and hospitalized. They aren’t the best pictures. I’m excited to see how they turn out (Hopefully they look good (( Crossing my fingers))(((and knocking on wood, just to be sure))))

It’s also confirmed that I’ll be playing the trumpet this year for band! My sister is helping me, so I have a personal, first hand helper when I’m struggling.

I was also able to make a Pumpkin spice roll!! It turned out really good and I was super proud of it. (Potato Potato helped) It tasted great and I’m happy it worked. It’s not something I’ve ever made before, It was new for me. Ta-da!

We got a new Catt!!!! His name is Dr. Bones and he’s super sweet. He’s only a kitten ( 6 months) and he gets along well with Captain. He really likes playing with pipe cleaners and feathers. We have, so far, named all our animals have Pirate names. So our dogs are Timbers (short for Shiver me Timbers (( I don’t really remember him though, soooo))((( We don’t have him anymore, he was at out first house)))), Compass, and Calypso and our cats are Captain, Thunder (RIP), Tortuga, and now Bones.

This week I haven’t been feeling great. As in I’m, just more tired and worn out. But it’s nice be on distance learning so I could get off of school early ( Or as soon as I finished my homework) We (finally) got a call from Kidney Clinic today saying that I should be actively on the Unos’ donation List. (Yay!) I was technically approved before (Which is good) but they had to wait for all the bloodwork and tests to go through (Which they did today). So this means, if a kidney shows up they can call us, so I can receive it. HOWEVER that being said, my blood type is kinda hard to match with some of the other characteristics of my blood/DNA, so they have to double check me with their special chart. TRANSLATION, This means I might have to wait a while longer for a kidney (Sadly). But when I get one it will be perfect for me. They said it might takes several months before they find one. I just hope that they’ll find one before I need to go on Dialysis.

I don’t like the idea of another transplant/Surgery , but I’m willing to go through with it if it means I’ll feel better. I really don’t like the idea of Dialysis and I really want them to find a kidney soon. In short, Its alot to have (But that’s okay). I can do it.

Gimli, the perpetually worried cat - Imgur
Lotta Emotion

Potato Potato Corner:

( In Image one it shows a Embroidery Kit, I’d like to thank Carol for it. I’ve always wanted to try it! so far so good! ((Thank you for the socks too!!)))

Potato Potato pun=What does a British potato say when life is grand?
It’s Mashing!

Potato Potato Quote=” Don’t feel like a beaten batch of mashed Potatoes. You are always Gonna be a Wonderfully Tall Potato! And I love you”

~Amelia

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September 23, 2020
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Activities

Back To School!

We started school again! On, like, Monday the 24th. Last year I was doing Home-Hospital (Because I was sick for a few months ((Like, 6 to 7))), and I didn’t have a proper school experience (Not that I minded missing basically all of 7th grade).

the struggle is real - Confession Cat | Make a Meme

But Thanks to Covid …(not really) My School has everything set up for online learning! I’m doing Distance learning this year. So I am officially doing a full course of 8th grade classes. I’m looking forward to having more interaction with teachers and learning more things than I was able to last year. I’m currently taking honours English and History and then 8th grade Math, Health, Band, Digital Literacy, and Art.

I’m really excited for my Art, English, and History classes. Art because I’m enticed to be able to have more mediums and more techniques to create art. English because I enjoy reading and writing. We’re gonna be having a reading log, different books, and multiple reports to write. mY cuP of tEa. History because I love learning about older stuff and cultures. We’re talking about early America this year also.

Funny: George Washington memes (46 photos) - - Xaxor | Funny art history, George washington funny, Funny art

I’ve decided not to take orchestra, instead going for Band where I’ll most likely be doing percussion (xylophone) or the trumpet.

All in all, I’m glad to be able to go back to school and have different classes.

On the kidney end…. I am tired, worn out, and still having a hard time finding food that tastes good. My medications makes it so some of my favorite foods now, aren’t so tasty. I still often watch Food Network shows. I just struggle wanting to eat much. I am doing better on my water intake ( I drink 3 liters a day)!

I have been accepted for the transplant list and from our last understanding, we are waiting for insurance approval before I can be in active status. The hurry up and wait game.

Potato Potato corner:

Potato Potato Pun= “What do you get when it rains potatoes? Spuddles.“

Potato Potato Quote= “Why like Hamburgers? Fries are obviously the best. Just remember, you are a beautiful fry!”

~Amelia

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September 2, 2020
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Amelia's Blog

I am Official!

Hello Everyone, We had very an eventful week. We found out that I have been approved by the Transplant Team for the region to be placed on the official Transplant list waiting for a kidney. I am a big bundle of emotions because of this announcement; Nervous because it is a HUGE surgery for me, it’s kind of nerve wracking. Relieved because I have been feeling so gross and tired. I know it will really help me feel better, plus it’s a lot better than going on Dialysis. Conflicted because if I get a deceased kidney donor, I’m not really sure how to feel. It was so much easier for me to adjust to a kidney transplant when Carol gave me her kidney. Not knowing where this kidney may come from is interesting to say the least.

This week we had Kidney Clinic. It was very awkward because they wouldn’t let two parents in; my dad being the one left out. Luckily we were able to Skype VideoChat in the room, so that he was able to be included. They had to adjust multiple medications, including a injection, added a new one to help prolong my kidney function, and then they just increased one of my normal pills. My labs this week were okay considering everything that’s going on. But we finally got my blood pressure under control! PLUS I’m not dehydrated!!!!!!!!! The only thing they needed me to do before going officially on the kidney list, was get a EchoCardiogram. Which I did today. Rating score: 0/10 would not recommend. (The People doing it were very nice, it was just the exam (( Glad the room was dark.)))

This weekend when my older siblings went camping, I stayed home and made monster pillows with my little brother! We had lots of fun, playing movies, eating oven s’mores, and sewing! Special thank you to our Church Family for thinking of us and sending loads of sunshine! It’s nice to know that we’re loved and remembered.

Potato Potato Corner This week Potato Potato was able was able to do *cough* help *cough* with two different puzzles! It had lots of fun and got very very confused!

Potato Potato quote “Be a French Fry, Stand tall”

Potato Potato pun “Who is a potato’s favorite author? Edgar Allen Poe-tato“

~Amelia

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August 19, 2020
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Activities

Camping 2.0

Hello Everyone! This week we went on another campout, this time with my little brother! We had lots of fun beating Dad at playing Uno, Hiking, and cooking marshmallows! I really enjoy baking marshmallows over the fire, and we had a BIG fire!

Emergency Toasted Marshmallow Kit - Picture Is Unrelated - Funny ...
  • Highlights of the trip!
  • I went stargazing at night and I was able to see multiple constellations like Cassiopeia and Cepheus
  • Stargazing is my new hobby as of a week or two ago
  • We had a big enough fire to be able to call it a Bonfire
  • I find the fire really peaceful and I enjoy all aspects of controlled fires…..except smoke
  • I was able to see a really pink sunset on a twilight hike
  • On the same hike we saw the city from almost the top of the mountain
  • I was able to forget about my Kidney for a while

Even Potato Potato had a lot of fun! It went on a new hike (In the time period of us walking It also fell…many, MANY times) while searching for its family origins. We also had a round of Uno played with Potato Potato, who found it very difficult to play with it’s mashed potato brain.

I’m glad to be able to live in an area to easily go to different campsites, and be able to enjoy nature’s wonders. I very much enjoy being able to stay in the mountains for a while. I’m excited to go again, no matter how far it might be from that time. Plus a fire and the extra access to viewing stars is a big bonus.

~Amelia

P.S. I got a nice anonymous gift basket full of yellow sunshine! Thank you for thinking of me. I really appreciate it. It made me very happy with the cheery aura it gave. Thank you whomever took the time to put it together. I loved everything it included, and I’ll even share.

I would also like to thank all of those others who keep remembering me and dropping off fun presents! Thank you so much!

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August 5, 2020
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Amelia's Blog

The Weeks are getting Looooong

This week has dragged on and on, AND ON. I’ve been tired all weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeece

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeek

This is my cat, Captain!

I was glad to have a easier week and less people to see. I only had one appointment with the Transplant Pharmacist for my medications. This is the last thing/ person I needed to check with so I could get listed for my transplant. They meet the first of August to see who they will accept for the transplant program. I should be able to be accepted into the program, as far as we know. That being said, enough stress.

Fun note: I got a CakePop maker this week as a gift, and I was able to make red velvet cake pops covered in chocolate. Everyone enjoyed them! Lots of fun!

I’m glad not to have any appointments anytime soon! I’m also excited to go camping again this weekend, to get away! I can’t wait to be able to play with the fire and hang out.

~Amelia

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July 26, 2020
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feelings

The one about the last pre-transplant class

Today we met with the pharmacist for our last Pre-Transplant class. She gave Amelia a bunch of information, and was really nice to talk directly to Amelia for the appointment. Since Amelia is the one taking all of these, she needs to know!

I really like when the doctors talk to Amelia, not at Brenda and I and hope Amelia gets it. Now, when she was younger, and for the first transplant, Amelia didn’t understand any of this. Now that she is 14, it is great to get her prepared for the future when she will be living with this transplant on her own.

Amelia wants the cat to help….

I wonder how she is processing all of this, learning what Brenda and I have been doing with her for years, and wondering how she is going to handle all of it. Of course we will be there to help, but it is a bit daunting. I took over setting up all of Amelia’s meds years ago when we almost gave her 2 doses and Brenda and I determined that 1 person in charge was a good idea. Amelia helps me now, to load her pill box and keep track of what she is taking every dose.

Hopefully after this appointment, she will continue to be aware of all of the things she has to do. I also hope that there is not a hiccup that will keep her off of the transplant list for another month.

At the end of this appointment, the pharmacist asked Amelia for a bright thought to get her through the rest of the day. That is just fun and it is great that they are involving Amelia so much in this transplant process.

More to come as we know…

Coming to you live 35 days into the new Kidney Journey…

-Justin

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July 22, 2020
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