Amelia's Kidney Journey

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

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

September 23, 2020

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Activities

September is almost over!

Well Hello there! It has been a little bit since my last post, not too much is going on in the kidney world, but life is a bit crazy.

Since August, everyone has gone back to school! Amelia is at home, doing all of her classes online and doing really well. Last night we had virtual parent teacher conferences and she is doing great! This Covid mess has one bright spot, and that is the ability that the teachers have to do online schooling. This is ideal for Amelia becasue she can be in a “normal” class and learn a ton. Home Hospital was fine last year, and got her through the basic classes for 7th grade, but this year she gets art and music, all online. She has gone in a couple of times to pick up things from her teachers, but for the most part she is at home. She did make it for school pictures this year and didn’t have to head up to Primary’s afterwards. Last year, she took her first picture and went to the hospital. That picture wasn’t great as you can imagine, so we did retakes, with the same result. This year she just came home afterwards!

We have been running around like crazy this month and it just seems to slip away like quicksilver. I can’t believe it is already the 23rd of September and it is officially fall, but it is already to week 3 of the NFL season. No, the Broncos are not doing great.

Amelia had clinic (with all of the “covid” crap restrictions) on the 15th and she is doing ok. She has been getting more tired lately and doesn’t feel great, but she still gets up and goes. They finally got all of the i’s dotted and T’s crossed for her to be officilly listed on the transplant list. We thought she was on the list before, but it was all preliminary waiting on OK from the GI docs and the oncology docs. All is good now, and we begin the actual waiting.

Amelia has been keeping herself busy learning needlepoint and continuing to bake. She made a pumpkin roll the other day that just may rival Grandma’s, and that is hard to live up to! We also let her and Leatha get a new cat. She loves the cat as you will see from her post. She is also interested in learning photography. I have let her use my camera for a few things lately and she is doing pretty good with compositions and lighting. I made her the official photographer for Cameron’s Eagle Scout Project last week, and she came home with nearly 900 images. We will have plenty to choose from!

All in all things are going well. We will wait for a kidney call and continue to hope that she doesn’t get any sicker. Brenda and I (and amelia) are continually thankful for all of you who are supporting us. We appreciate your thoughts and prayers, we can’t do this without your support and that from Heaven.

Still coming to you live 93 days into this kidney journey,

-Justin

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

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

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!

August 5, 2020

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Activities

The one about Amelia’s Second Campout

Yes you read that right, I have taken Amelia on 2 campouts now, and she is a trooper. She loves to be out camping. She goes and goes, and gets tired easy, but she will rest and head right back out!

She had a great time running around and taking pictures of her potato with Tristan. She also had a great time beating me handily at Uno. Yea, I ended up drawing 24 cards in one round….

She was also very good at helping to get things ready for dinner, saw wood, and then clean up. I think she likes to just be outside where there is not much thinking about her health. It is good for her to breathe some of that mountain air and watch the fire dance. And apparently there is some mystical medication encased in marshmallows…she is diligently searching for that, just like Charlie searching for that golden ticket.

If only there were marshmallows that would grow a new kidney. It is fun to watch her teach Tristan how to camp and do some of the camp chores.

Still coming to you live, 44 days into the new kidney journey

-Justin

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

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeece

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeek

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

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.

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

July 22, 2020

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Amelia's Blog

Day 2: Pre-Transplant Classes

Today I had to wake up at 6:45 to get to Primary’s (For day two of Transplant evaluation) by 8:00!!!! Not my usual time to be awake. It seemed that they just kept droning on and on, I still learned a lot! So, as soon as we got home I took one of my usual naps, except this one lasted four hours.

Today I learned:
My current Kidney might be removed.
I may need a “CAT” scan. (editors note: this is a real CT scan and has nothing to do with a feline)
I’m glad that I have a good friend in Nevada who I can vent with.
I’ll be staying on the same Medications for my kidney.
I’ll be having ALOTTTTTTT of doctors appointments for the first three months after the Transplant.
I have to get the high school booster shots before I can get a kidney.
They’re Vampires
EVERYONE asked about if I had a live donor yet.
But, like, How do you ask someone that?

~Amelia

July 17, 2020

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Amelia's Kidney Journey

Alive in a Whirlwind…

A New Cat!

September is almost over!

Back To School!

I am Official!

Camping 2.0

The one about Amelia’s Second Campout

The Weeks are getting Looooong

The one about the last pre-transplant class

Day 2: Pre-Transplant Classes

Hi! I’m Amelia!

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The Kidney Foundation Celebrates Amelia!

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