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Has it really been 4-ish months?

Hello! It’s been a loooonngg time since we last updated! Lots of things have happened and for the most part all good!

I am back in school, but this time High school! I am still distance learning, but they have a much better system this year. It is the end of quarter one and I am doing pretty good! All A’s as far as I’m aware. I get everything in and my teachers have been really nice! I do have one class I go in-person for but it’s a small class and not in the actual school itself. I have been quite stressed about school because I really want to do good and so far I’m told I am. It has been tricky catching up from all the school I’ve missed over the past 2 years. But I’m getting there. I have a much better score in math than I’ve had in a long time. It has taken me a few weeks to figure out a good schedule for waking up at 7:00, But I’ve basically got it! It also is hard yet helpful in a way when Bones joins me during school, usually just sleeping!

Health wise I’ve been doing so good! I am now on once a month appointments and blood draws! This is after every two weeks. I’m just glad I don’t have to get checked out of my classes for them. I am also glad that we don’t have to go in all the time! My BK virus is completely not showing, or as low as it will usually be! But this is after about three different tests. Which isn’t super bad because last time it was many, many more and each time it got lower so it was all good! They also ended up adjusting a couple of my meds for that but all of my other labs have been really good, showing that I have been getting all of my water and my milk. (Even though milk has been tricky for me!) It is also saying that my kidney is working super well and it isn’t causing problems, so I’m on a lower of my anti-rejection med because it is working! I have been doing very well and have only gotten sick once this season, which was sort of surprising to me. I could have gotten sick so many other times but I haven’t, which is very good!

I have been able to do more lately even if that isn’t a super ton. I’ve never been able to do everything so I’m not upset by this. We have gone to the Utah Hogle Zoo a few different times and I’ve been able to walk some if it, spending the rest of it in a wheelchair so I can still enjoy the animals. We have gone on numerous day drives and camp outs. Just little things when we can add them in there. I have been able to go on more walks with the Dogs for my exercise. I’ve also been able to do more with my sister, we have gone on multiple outing every once in a while. Sometimes to just get out of the house.

I have been crafting a lot more because they lowered my med that makes me shake. So I’ve been doing lots of cross stitching. Which I very much enjoy even though it might take me forever to finish, because it’s a pre-drawn out cross stitching lap blanket. I think I’ve been working on it since August and I’m only done with a tiny bit. But I don’t mind as much as I usually would.

Hey everyone! now that I have been doing so much better and not much has been happening since school has started, this blog is going to hit a major lull. Because I am feeling better It’s just not going to be updated a lot. We will try to update every few months or so just for an update with reassurances about how we are doing as a whole family. This way you know. Thank you everyone for following and caring. It means a lot more that I can express.

~Amelia

November 3, 2021

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Activities

School, September, October, and the August that lasted 15 minutes…

Hello again all! It seems like every time we blink another week has gone by. Then we keep saying “we need to update the blog” and all of a sudden it is another 2 weeks and another kidney clinic finished. I suppose that is good news though, Amelia isn’t having many problems to report. Since our last update…in July…There has not been too many things to report with regards to Amelia’s health.

She has been getting stronger and doing more, including some sewing. She made Halloween placemats for us. She has also been baking up a storm, learning new things and making Leatha a bit jealous.

School started in August and she has been doing online classes. At Parent Teacher conferences, all of her teachers gushed about how good she was doing. One teacher keeps giving Amelia days off from class because she is so far ahead of the other kids in the class! As of this writing, it is the last day of the semester and she is cruising along with all A’s to show for it.

We have finally gotten to monthly kidney clinic appointments! It is nice to only have to go once a month now, and Amelia doesn’t mind a monthly blood draw. We had to reschedule Octobers clinic because Amelia picked up a cold that is dragging her down. We know it is not COVID, she has had her 2 shots, but gets to have another because she is immuno-compromised.

Fall is upon us now, it has snowed and is getting colder, but It was nice this past sunday so we decided to take a family trip to the zoo. Amelia wasn’t feeling great so we dug out the wheelchair and headed out. We spent a lot of time at the elephants, remembering Grandma who passed a year ago. She loved the elephants.

The cold weather also took its toll on our garden, and we had to harvest all fo our tomatoes and squashes. And guess who was out there picking most of them…Amelia!

All in all we are doing well. Still looking for a house, but doing the best we can. With the infrequency of our updates we are wondering if this blog is still worthwhile. If you are reading this, please take a second and comment down below so that we know these updates are still of value. We are considering archiving this whole thing if it has run it’s course.

Thanks for reading, and keeping our family in your thoughts and prayers.

Still coming to you live 192 days into the new kidney,

-Justin

October 20, 2021

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Activities

Is it really July already?!?

You know the time seems to slip away so fast… It is hard to believe July is almost over. It has been nice to only have Amelia on weekly blood draws and twice a week clinics. We have only been up there twice in the past month.

Amelia is getting better ll of the time. We have seen her go from being so tired and weak before the transplant to being up and going and wanting to get out and do things. She likes to go for drives and just get out. We are still careful with interactions because of her meds, but they are being reduced. She is off of all of her antibiotics, antivirals, and antifungals now. She is still on prednisone for a couple more months though.

They finally have her blood pressure under control, and it has been even and in a normal range for quite a while now. If this keeps up she will not have any blood pressure meds in the future! Along the other lines, the BK virus that is showing up in her labs is about the same as it was last week….that is good, that means she is fighting it to some extent. We want to avoid it throwing her off again and having to go on chemotherapy again. She has had enough fun for a while.

It is nice to not have to be so worried about Amelia right now. She is doing so well. She is becoming the pastry chef in the house. she keeps trying new recipies and finding things on the internet to cook. She bakes with Leatha sometimes and it is funny, Leatha gets relegated to sous chef and Amelia takes over. It s fun to see her personality coming out like that. She is a strong girl and it is showing in how she is taking on life

We are about a month out from starting school and Amelia is a bit worried about 9th grade now being High School. She is banking on them still having distance learning this year….As of now, they do, and hopefully for her, it won’t change. Otherwise, she is heading to Taylorsville High itself. Until we move at least.

We are still working on buying a house, but it hasn’t gotten much better in the market. We just keep trying and count our blessings that we have a place to stay. As soon as we can though, we will have our own house.

Well, that is the latest from the Matthews. Thank you again for following us and keeping us in your prayers. Our cup truly is overflowing with blessings through all of this year. We do appreciate it.

More to come as we know it.

Still coming to you live, 101 days into the new kidney,

-Justin

July 21, 2021

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Activities

It’s been way too Hot, and I’ve been less productive.

All things considered, Not a lot has happened. It’s been getting hotter, so I’ve been inside all the time but I also can’t get burned all. Because of Meds it can be bad if it gets further than just a sunburn. We were able to go out and see fireworks for the 4th! We have been outside significantly more than before, I’ve been doing lots of walks and even went scooter-ing once! (it was a lot. Maybe not again for a little bit).

My kidney has been doing very good! We finally got my blood pressure settled and figured out, I’m off of more medications, and I’m on once a week blood draws. I do need to make sure I get all my water in with all the heat, it’s been a little tricky but I’ve been pretty good. We made yet another chart for me to fill out to help get all of it in. I have had a few more headaches lately but it shouldn’t be anything other than not having enough water. I also need to get lots (it’s the normal amount for someone in the same situation.) of Calcium. So Milk and cheese all the time!

They have found the BK virus more prominently in my blood the past few weeks. So they lowered my anti-rejection dose so I could hopefully fight it by my self. If that doesn’t work they’ll do something else. I’m not really sure what. But the BK virus is the same thing I had in 2017 when I got Chemotherapy for a few months to wash it out of my system. (Oh! that’s what they’ll do last if it continues to progress. Chemotherapy is a last resort.) My labs did come back and the BK hasn’t gotten worse. It’s staying where it was last. So hopefully it won’t increase at all and it goes down. I am off yet another medication. But only one. That’s okay though! I’m only on like 8 pills in the morning and 6 pills at night!

I have been reading a lot lately. Just like always. Finished like 3-5 books. I’ve also watched more of shows by myself this month than I have for MONTHS. I’ve also made so many different treats the past few week I’m surprised that they aren’t sick of sweets. I have made like 6 different types of cookies, two different Cakes, and muffins. It nice to be able to bake again to help with the stress.

~Amelia ❤️

July 21, 2021

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Activities

The heat doesn’t change much…

Hello folks. Hot enough for you? I have decided that it doesn’t change much of the turbulence in the life of the Matthews. It has been almost 3 weeks since we have updated things on here, that is too long. We keep trying to get Amelia to post something, but we are still struggling. Maybe we can blame the heat for that.

Over the last few weeks, Amelia’s kidney has started to level out. it has gone from over-working to working like it should and it has now kicked in to help regulate her blood pressure. It regulates very well, and as of now, she is only on 1 blood pressure medication. We had some worries as this was happening though. She got really low on her blood pressure and almost passed out more than once. But the doctors have a handle on it now, and they are keeping Amelia in the right range with only the one medication. She has been on so many meds for blood pressure over the years, I am sure that the rest of her body is trying to figure out what is going on.

She is very excited that her clinic appointments are every other week now. She is looking forward to getting back to quarterly appointments. They still have to draw blood 2 times a week, just to keep tabs on her. That will go to once a week and then every other, and then once a month in the future as her transplant ages and she gets more balanced. I am looking forward to only loading her medicine box with her anti-rejection stuff and a vitamin or two. That will be so much easier. I am sitting here looking at a picture from when we brought Tristan home from the hospital and we got all of the kids together on the couch. Amelia was 4 and 1 year out from her first transplant. And just out of the hospital herself, but that is another story. I was thinking back to giving her medications then. She couldn’t swallow pills yet so we had everything in elixir form for her to drink. The pills are definitely easier.

We are also watching a virus called BK. That has reared its ugly head before and resulted in PTLD and a few rounds of chemotherapy. Last week the virus was on the low end of positive, but this week it is up slightly. They are adjusting her immuno-compromising medications to try and let Amelia combat this virus, so it doesn’t get into her kidney. Don’t google this, just trust me, the doctors are concerned and watching it closely so it doesn’t get to the PTLD again. Your prayers are appreciated.

Otherwise Amelia is feeling better and getting outside and doing things. She was a big help moving stuff out of one storage area to another even though it was the hottest day of the year. She has been walking a lot, and we even got her fishing again on Father’s day. She didn’t think she wanted to fish, but by the end of the trip, she was telling me that her pole was too old and her reel was broken so she needed a new one. Easy fix, I work in a sporting goods store. Then she decided that she was going to fish enough to need a license. She hasn’t had one of those for years. I told her that we had to go fishing enough to justify the cost (I really don’t care about the cost, but that is an excuse to get out and fish more…) and she agreed! That is miles and miles better than the past few years where she would just want to go for the drive and then just sit and watch. Next up will be fly fishing….or maybe ice fishing….

As for the rest of us, we are settling into our temporary house pretty well. Everyone is learning that minimalism isn’t so bad and we can get by. But then we realize that all of my camping gear is stored in the storage unit. In the back of the storage unit. and I don’t want to unload it all in the heat. So we are making do, and it is working. We are still looking for a house, but the market is still screwy. We tried to look at 4 houses last week, and our real estate agent came back and said that one was already sold, 2 didn’t take FHA loans, and the last only wanted cash offers in a hurry. Yea, thanks for that. So we are still looking. We have some great friends that are keeping an ear out for anyone who is looking to get their home for sale and maybe we can get in on that before it hits the open market. That may be the only way we get into a house right now. We will see.

Overall, we are doing well. It is so nice to have Amelia getting better that it isn’t even funny. I don’t have a ton of stuff to report, and that is a good thing. I firmly believe that our family is going in the direction that the good Lord wants us to go in. Even with all of the chaos and things happening, I see too many little things that happen just the right way or just at the right time to be coincidence. I know that there are more prayers than mine contributing to the things that we are doing. I want to thank each of you again for sending those prayers and well wishes, they are effective and answered in a very real way. I am a big believer in group and directed faith, it most definitely does work miracles. I only hope that I am able to pay it forward in sufficient quantity. Thank you again.

Well, that’s all for today. There will be more to come as we know it.

Still coming to you live, 75 days into the new kidney,

-Justin

June 25, 2021

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The Kidney Journey

It has only been 1 month and 24ish days since the transplant and I’ve been over the appointments and blood draws since March.

It’s been pretty hectic the last few weeks between moving and kidney stuff. But we are comfortably in this new place, temporally, house sharing with a few people. The way we have everything set up right now, has the girls and the boys in separate rooms in the basement and the parents upstairs. We are all doing really good (even with our sleep schedules being messed up). It’s too hot to be outside, ‘Cept I keep going outside… Because the backyard here has lots of shade and frankly it’s nice to read outside. When it’s not 100 degrees. Or when there isn’t children back there…

I still have two blood draws a week which is very frustrating because it usually seems unnecessary. But the Kidney Clinic’s are now in the afternoon and not too-early (probably normal people) hours. We haven’t had many changes in clinic besides many medication changes (I’m off of two more meds!). I have been having some problems with my blood pressure because my new kidney is still over working and I was still on quite a bit of Blood pressure meds, because my blood pressure was dropping lower, and I was getting super dizzy and lightheaded whenever I stood up. I am still slightly dizzy whenever I stand. But it’s getting better! I’m still not feeling great overall but it’s loads better than it was. We even went on (at least) a mile walk yesterday.

School is now over for the summer (the boys are SUPER excited) I finished a week early as a distance learner because I couldn’t go to the last week fun activities, but I don’t mind at all. The day that everyone else got up Leatha and I went to the store and got…books. Six books each. It was nice. I even got Classic books instead of others because…I like classics and history. I do plan on taking a few, fun, not required summer classes so my summer isn’t boring and completely pointless.

Cat Update(?) All the cats have been stressed in the move but they’ve been doing pretty well. Bones is up and everywhere, not really bothered with the move. Tortuga, surprisingly, has been really good and exploring and social (to at least Leatha and I). Captain though has been very grumpy and hiding but has been coming out more the last day or so. He’s still cuddly at night so its a win. That’s it really, they’ve been good but still getting used to everything, to be fair so am I.