Amelia's Kidney Journey

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Category: The Kidney Journey

feelings

Stumbling into the new year

I wrote the last post about how fast things have been going, but then, don’t you know, it has been over a month since we have written. The Christmas season was a lightning blur, even with so many activities cancelled or postponed due to the raging COVID monster. We didn’t get to go to the festival of trees this year, but we did get to watch it on the computer. A bit different, but still cool that they could have the fundraiser still.

Well, we had Christmas and everything went really well. Amelia had some hiccups with her medicines and the timing of them. We had switched one of her meds from the afternoon to the morning trying to get a good reading on the labs. The problem showed up pretty quickly. This medicine makes her shaky and not feel very good. She wasn’t able to eat much, and was nauseated along with the shaking during the day. She was getting miserable, so we switched her med back to the afternoon. With that she is doing much better, having those symptoms during the night when she is sleeping, more or less.

She is able to eat better and is feeling better. I ask her every day how she is, and she usually says, “Crummy.” I told her that she should call that her normal and let us know if she is worse or feeling better. I only keep praying that she will be feeling better soon.

We had a fun New Year’s Eve, celebrating with homeade sushi and seafood, that Amelia actually ate. We call that a win.

She has been doing good with school, but is glad that this semester is over. She is looking forward to getting started on some new classes. We also found out that Amelia will be in one of the first classes of 9th graders to attend high school. She will be going to her 9th grade year at Taylorsville High School. She was both excited and nervous about that when she went to the orientation. Lucky for her, Leatha and Cameron have been going there for a few years and the school itself isn’t so intimidating.

Earlier this week, we had another kidney clinic, and wonder of wonders, it was virtual. I didn’t get to attend, but it went faster than ever before. We did find out that her labs are doing better in some respects, but worse in others. He kidney function is definitely going down though. We keep hoping that a new kidney will be coming soon to take care of that.

Again I would like to thank everyone who reads this blog and keeps Amelia in their thoughts and prayers. I am a big believer in the power of group faith and prayer. It is the reason that we still have Amelia with us, and the reason that she has done so well over these past 11 1/2 years of her transplant. Thank you to all of you.

I was also remembering back to that virtual Festival of Trees at the first of December, and a couple of things that Alex Boye said in his final remarks that have stayed with me all season. He said that he had looked up contagious in the dictionary and saw that it meant the transmission of something from one person to another. While we all have the COVID beast in mind, he also said that there are things in this world that are even more contagious; Love, Peace, Harmony, Joy and Good Tiding of Good Will. He was talking about the feelings of Christmas, but those are exactly the things that Jesus Christ embodies, and what I hope we can all spread around this country.

This weekend we had our stake conference. During the Saturday night session, they had a slideshow of some of the things that our stake did for others during the pandemic. From yard cleanup, to the harvest festival, to the coat drive, to the bike drive, these were all things making the community better. I find that seeing that kind of service and love in the face of this pandemic inspirational.

Carrying on and taking care of others, and just living with odds and circumstances against you forces you to find another way to look at things, and brings hope. Hope is always there if we can find it. I hope to be able to always find that hope.

Alex Boye also said that he mother used to tell him to always find the gift in every struggle, find the peace and good. We try to do that with all of the trials that we have and especially with Amelia. I know there is a far reaching reason for Amelia to have this kidney failure.

I don’t know what it is yet, but it will enlighten someone in the future. For myself and Brenda, I feel that our trial with Amelia is not only teaching us things, but through all of this, we will be able to help someone else understand what their child is going through, and help them. I don’t know when that is going to happen, but I hope that our experience will support and help them to find the gift in the struggle.

Thanks again for reading this.

Still coming to you live, now 208 days into this new kidney journey,

-Justin

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January 17, 2021
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Amelia's Blog

It’s beginning to look a lot like Christmas?

We had Thanksgiving! It was super fun with my Grandma joining us for most of the day. I did end up eating more than usual (like most people do on Thanksgiving). For the meal itself I made ( ‘Cause me and my siblings make different dishes every year, so we have the experiences for the future) Candied Yams/Sweet Potatoes, The Rolls, and a Crust-less Pumpkin Pie. After dinner we started the Christmas season with a few games like Bingo for funny presents, A dice game for Puns (that my mom made as gifts), and a fun “Stuff the turkey vase with puffballs” game that my sister made. My Grandma also brought a fun Christmas carol game. We ended up going to bed super late (close to 1 AM). It was worth it.

For Christmas, one of our traditions is to create homemade presents for each family member. This year I’m ahead! I have everything figured out and started. I think they’ll really enjoy everything I’m making this year. I have gotten into some fun and different crafts such as Knitting and cross stitching! My grandma is helping me to learn how to knit and a few techniques. So far I have a good chunk of a scarf done, around making all the Christmas presents.

Every year we make homemade ornaments. This year we made them out of polymer clay, like we have for the past few years. This year I made a flower bouquet thing-y. I just kinda made a few flowers I liked, and put them on an ornament.

Another tradition we have is to make sure we get Christmas pictures. We usually hang up one or two photos and send cards out to family and friends. This year we have a few cute pictures that we took with the company FotoFly down in Kaysville.

On the school end, It’s almost the end of both second quarter and first term for school. I think I’ve been doing pretty dandy, so far at least. Distance learning is really great for both Covid being around (and spreading((Stay safe))) and for kids who can’t attend because of medical reasons. It’s nice when I’m not feeling as well, and need to hold off on working for a little bit, I can just do school work later. Like when we went and got our pictures taken, I did a little bit of work in the morning and the rest after our appointment. It’s really nice.

Kidney Update

We had Kidney clinic a few days ago. (A usual appointment length ((So like two hours)))

Tony Stark Eye Roll Meme Generator Template

So far I’m doing really pretty good! According to my dietitian, I’ve been eating enough lately! Which is great for everything that’s going on. ( I do need to continue to eat enough so nothing will happen). The doctor of the day didn’t say ANYTHING about Dialysis; SO I won’t be needing Dialysis anytime within the next month-ish. My kidney function is down by some, but luckily I’ve been feeling about the same. Hopefully how I’m feeling will stay the same for the time being.

Then, lately I haven’t been very good with taking my Tums, so they decided to switch them with a pill that does the same thing. And so far the pills has been better (for the most part) and I’ve been able to take them with each meal like I’m supposed to. I currently don’t have a certain diet, but I need to start changing to a kidney diet. Which means I can’t have as much of somethings. So I’ll be used to the changes before the actual diet changes. SO! I can’t have as much Chocolate. I’m SUPER sad about that. So instead of asking for my usual chocolate bar (When we write to Santa’ every year we get to ask for one specific treat)….I asked for Starbursts (which are still good, I still like them) But Chocolate.

CHOCOLATE! | spongebob chocolate guy | Spongebob, Spongebob chocolate, Spongebob memes

Potato Potato Update.

MESSAGE FROM STARCH LAND: Our dear friend Potato Potato has recently gone missing. We don’t know what happened, but we have the French Fry Police on the case. Potato Potato will be found shortly. Thank you for your patience.

Oh and cat pictures.

~Amelia

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December 9, 2020
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feelings

In the Blink of an Eye

Boy it seems like only a few days since I last wrote a post for this site, but when I looked, it has been almost a month! I guess there is some catching up to do.

November went really fast. I mean really fast. So fast that you could miss it if you blink too long. Amelia had an orthodontist appointment and a dentist appointment on the same day!

She has been doing ok over the last month. Her appetite is better and she seems to feel better, even if it is only a little bit. We have been running around some, trying to get things ready for Christmas crafts and she has been riding along. We even took a mini road trip out to the west desert after Thanksgiving and she had a good time on the ride.

For Thanksgiving, she was a great help again. She made the candied yams, helped with the rolls and snack table, and made crustless pumpkin pie. They all turned out great. She even tried her hand at making fudge. It turned into a fudge flavored syrup, but it tasted right! She wants to practice that again.

She did have a clinic visit this past week, that was basically uneventful, but they did say some of her blood levels were looking better so that helps. We just have to hang on and wait for that kidney to come, hopefully before she needs dialysis. Last clinic they started talking about dialysis, but they didn’t say anything this time about it.

For now, we are in a holding pattern, just hoping that Amelia can keep feeling as good as she can. We are looking forward to Christmas though, we are trying to make it as normal as we can staying at home. Good thing a bunch of our Christmas activities are home related anyway.

I hope you all have a very Merry Christmas Holiday, and a Happy New Year. More to come as we know it.

Still coming to you live 167 days into the new Kidney Journey in the Year of the Covid…

-Justin

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December 7, 2020
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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

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

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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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