Amelia's Kidney Journey

Header image

Category: Activities

Activities

In with April…

Well, April has arrived and time marches on, as does the wait for the kidney. Amelia has been hanging in pretty well with all of these challenges she is having. At least she is not in pain like she has been in the past. I don’t like seeing her like this, when her normal is “ehhhh”. I keep telling her to change her scale and make that “ehhhh” into “fine” so we know when she is going down. She is still trying to do things normally, but she is struggling.

We went to a couple of Easter egg hunts this year. The first one Amelia made it all the way across the soccer complex to her area and got a few eggs in the chaos. We then went to Riverton where they had an interesting way to do Easter. Around the whole park they had stations where the kids could do activities and get eggs and a punch on a card. They went around the park, got all of the punches, and got entered into a drawing for 1000 eggs. I gvuess we didn’t win, but they had fun. Amelia rode the whole way around the park in her wheelchair and did as many of the activities that she could. Cameron was great pushing her around and doing a bunch of the activites while he was pushing her in the chair.

After that we went fishing. She didn’t do a whole lot, but she had a good time getting outside and seeing some actual sunlight. She still got worn out. She did have another session at kidney clinic this week. She is just hanging in there for now. She is not ready for dialysis as of now, so that is good news. We also found out that she will be able to avoid having to get a fistula if dialysis is needed. That helps her get ready for dialysis. We just hope that we can get her a kidney before she needs to go on dialysis.

On that note, I am finally getting the next round of tests done to see about donating a kidney for Amelia. It has been a very slow process for sure, but I am hoping that it will speed up at this point. We will see what the tests hold after tomorrow.

Thanks for sticking with us and continuing to keep up with Amelia.

Still coming to you live, 294 days into this new kidney journey,

-Justin

Read More

April 8, 2021
0 Comment
Activities

New Year’s Beginning

The new year has started, we’ve been making new goals, and having new hopes for what is to happen. So far 2021 (For us at least) has been pretty good! We’ve been doing good and haven’t had any disasters. So far we’ve been able to make our New Years Goals and have written them out. Some of my goals I’m super excited for because they’re crafting goals. Like I wanna make 3-4 cross-stitching patterns, finish 2-3 Knitting projects. and try 4 new baking recipes of things I’ve never made before all before 2021!

Health wise, I haven’t been feeling great. Just a bunch of overall crumminess and not feeling well. I’m having problems eating again, mostly because of my medicine making me not be able to taste a lot. We had a doctor’s appointment Tuesday, and they said that I’m doing pretty good! My labs have been doing really well (considering everything that’s going on) I’m eating and drink all I need to!

We haven’t gotten any new news about the kidney list, but we’re still hoping and waiting for something, sometime soon.

We had Christmas, and it was super fun, I was able to do a lot more that week thanks to a medication time change. We got to see a lot of family members and talk to other family members. Christmas itself was harder, probably due to lack of sleep. I was able to finally sleep for the first Christmas Day I can remember. But overall it was super fun and I’m glad we had as much…everything as we did.

I also got a few things for Christmas that helped spark a few of my goals, like a New personalized Apron with Minnie Mouse on it that my Grandma made, kntting yarn, and cross stitching fabric and some cross stitching patterns!

New years went similarly. We had a Seafood dinner and had lots of fun waiting for midnight, we also watched the Towering Inferno, Because of our tradition to watch disaster movies on New Years eve.

2nd quarter for school ended this week, and I did considerably better than last quarter. I got everything in and my grades are alright! I’m actually really proud of how I did. So hopefully I’ll do better next quarter. One of my new classes is gonna be CTE which is all the Sewing and Cooking, so I’m excited to see how that gonna pan out with Distance Learning.

  • Baby Yoda!
  • Dr. Bones!
  • Random pineapple
  • Dr. Bones
  • My Cookies!
  • Tortuga
  • Captain in the egg box

Potato Potato Corner

Our dear Potato Potato has went on a Christmas get away into the south mashed potato ocean. They have gone missing for these last 2 weeks. We assure everyone that they will be OKAY, we just have to locate the potato. Thank you, and don’t worry.

Have you seen my lemons? - Drawception

~Amelia

Read More

January 17, 2021
0 Comment
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

Read More

October 18, 2020
0 Comment
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

Read More

September 23, 2020
0 Comment
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

Read More

September 2, 2020
1 Comment
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!

Read More

August 5, 2020
2 Comments
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

Read More

August 5, 2020
1 Comment