Amelia's Kidney Journey

Amelia's Blog

Early February

These last few weeks were sort of uneventful. We had Kidney Clinic (WHICH WENT ON FOREVER AND HALF A YEAR! Even though, we only saw three people and were in the waiting room for forty-five minutes. To start. Then we spent, who knows how long, in the actual clinic.) They said that I was doing pretty good right now (even though I’m not feeling great) and wont need Dialysis for now, until we see them in a month (not guarantied we might have a while) . I just need to make sure I get all of my food and medication in.

(Edit: The clinic called us some time this week, saying that ” i’M nOt AllOWed tO haVE aNy mOrE VirTUAL appOINTments, beCAUSE oF THe diffERENce oF tHE hoME anD thE clINIC SCales” So for now on in-person appointments. Just like before. Also, my Dietitian says that I don’t have any current restrictions ((but I don’t need as much protein! Its not needed in my diet, though I can still have meats.)), But I NEED to make sure to get enough calories, so I don’t lose weight and need Dialysis sooner.((I am basically allowed to eat anything and everything that I can. (((junk food included))))))

I’ve been doing good in school (I’ve been clear and able to get all my work done on time, and efficiently. For a few days there I had ((almost)) NOTHING to work on) I had Parent Teacher Conferences on Thursday, I did quite good, even with internet problems. (they were all zoom meetings) I’m quite proud of myself.

Almost everyone (plus my grandma) watched the Super Bowl last Sunday. I ended up leaving the room and helping my sister once I figured that the Buccaneers would win. I DID eat quite a bit though (Me along with everyone else during the game).

We had Valentines day. It was different than I remember (that being it just felt different and not another holiday. ) We had a nice dinner (i.e. Surf and Turf) and our regular valentine letter exchange. It was also nice over the weekend to see family.

Some time last week we needed to move rooms (like we do every so often) because of spring cleaning. (it was funny, my little brother ((who I was exchanging rooms with)) REALLY didn’t want to move rooms. It took a bit of convincing ((he likes it A LOT now, he just took a tiny bit of time))) I am now down stairs with my sister and all the cats. Its been quite a bit of work, because my room is currently in transition. But, its perfectly fine! It’s worth it.

I have finished four, over two hundred pages, books. In less than a week…….. I’m also in the middle of another one….

Potato Potato Corner!

We found Potato Potato, they were hiding in a cave. So we celebrated, they got to see some cats and watched a movie.

February 16, 2021

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Amelia's Blog

JaNNnNNuaRY

I REALLY haven’t been feeling well lately. Mainly just my kidney function is going down (we think…. ((It’s not low enough to need Dialysis yet. Thankfully. But it’s coming closer))) My labs have been slowly getting worse. I’ve also been nauseated (more so than usual) and have been needed to take/do things to help with it. But it was better today, to the point I was able to eat a full meal.

School has been stressful ( But what else is new? ¯\_(ツ)_/¯ ). Last week, my sister and I made 44 ‘Star Wars’ cupcakes; half of them chocolate with green mint frosting and red ‘Light-sabers’, half of them vanilla with red strawberry frosting paired with green ‘light-sabers’ .

We’ve been able to go on a drive or two, and have seen a few new views. It’s nice to get out of the house sometimes.

Then, some cat pictures …

Potato Potato update

They are still missing, so for now my cat, Dr. Bones is standing in.

~ Amelia

January 28, 2021

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feelings

Exiting January, kicking and screaming.

January has been, interesting to say the least. We have been watching Amelia get sicker and sicker over the past few weeks. She has lost much of her appetite for anything that doesn’t include copious amounts of garlic, because that is a strong flavor that she can actually taste with all of her medicine. We made garlic fries ala Seattle Mariners and she ate a whole bunch!

She has been more lethargic and gets worn out easily. Even her beloved drives seem to wear her out more than they should. It is disheartening to watch her go down like that. When her disease first hit, it was rather quick and then took a long time to get to to normal. This go around, she has gone downhill from normal rather quickly. It is hard to see for us as parents.

We still have hope though. When the time is right, she will get her transplant. These trials willhave a purpose in the future, and we will all be stronger when we get through it.

Thanks again for all of your continued prayers and well wishes.

Still coming to you live, 219 days into this new kidney journey,

Justin

January 28, 2021

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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.

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.

~Amelia

January 17, 2021

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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

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

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

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.

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

November 8, 2020

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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

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.”