Spoon Theory

So in honor of Rare Disease Day I’m going to write about the spoon theory!

As most of you know I have cystic fibrosis which is a genetic rare disease that has no cure, it’s also known as cf or 65 roses. These past two years have been hard, my health has started to decline and I’ve developed depression and anxiety. I’ve read a lot of stuff and one thing I discovered was the spoon theory. It’s a way for people with chronic illnesses to explain their energy levels in spoons.

Say I have 12 spoons in a regular day

It takes me 1 spoon to get out of bed

2 to take a shower

And so on

When I’m having a bad day I’ll have less spoons

Say I wake up with 5 spoons

I have to prioritize what I’m going to do

If I use more then I have it means I’m working on negative spoons, which then takes spoons out of the next day

The Seasons of Growing Older

Growing older

Is like a tree

You start out little

Then you grow

You branch out into your hobbies

Friends

Relationships

Then leaves come and go

Some green

Other yellow

It’s like fall

They represent new beginnings

Every time you lose leaves

It’s the start of a new time

Once they come back

You’ve got a different thing

A new school

Grade

Or obstacle

Growing older means more responsibility

Some get it at a young age

Others struggle with it

Along with responsibility comes independence

Some have too much

Or to little

It’s like winter

The snow comes and goes

Some winters are worse than others

You get lots of accidents

Or none at all

The roads or icy

You can slip and fall

This is when you have to much responsibility

You can slip

Get in an accident

Mess things up

When you don’t have enough

You can have no snow

It’s weird for this time of year

Your supposed to have at least some, but what if you don’t have any

Growing older is like spring

It’s the awkward parts

The weird in between

Growing older means new experiences

It’s like summer

Everyone loves summer

It’s a time to do things you want

Figure out what your passion is

What you like

And what you dislike

Everyone likes summer

But some hate the warm ness that comes with it

Some experiences are good

You enjoy them

But others can be bad

But you learn from them

I mixed the two ideas of growing older and seasons from this website

https://www.creative-writing-now.com/poem-starters.html

The picture above is from

https://juliegarro.com/2013/09/03/seasons-of-life/

Late Night Thoughts/ RPOTW

I wrote this on the day before Halloween, if you get confused with names I use look at the bottom of the post

It’s that time of the week again, but this time I’m doing LNT’s with RPOTW. You know I’m shortening them because it’s a pain to write it all out. It’s funny how I say random Post of the week but I probably only write one every couple of weeks or even months, but the name stuck. Anyways grab some food and your furry friend because this ones going to be a long one!

First Topic: Health

I do talk about health a lot so if you don’t want to read all of it just skip to the next topic.

About a month or so ago I got another lung infection. Same symptoms and everything. I had had a sinus infection and was on an antibiotic to treat it but it also happens to treat lung infections. During my sinus infection I developed a lung infection. I was on that for 3 weeks.

Next I went to my 3 month monthly clinic. My pfts were worse and the antibiotic didn’t help my symptoms. My doctor, who I’m just going to call L for the sake of writing, put me on a steroid for 5 days. It’s meant to help inflammation and trapped air which calculated by another pft calculated 33%. In my bronch I did 3 months ago there was inflammation too. It didn’t help. Honestly I wasn’t that surprised because steroids never help me. Anyways, my mom called my hospital to let L know about what’s going on. I was put on an antibiotic that I’ve never been on before and can be used as a prevention med. I took that for five days and now I take it 3 times a week. It didn’t help.

My mom called again. L wanted to see me (and my sister) and get pfts done again. My pfts were basically the same. L came in and talked to us and after a hour or so we were set. The plan is tomorrow (the 31st) I have to do a clean out which is where I have to take a bunch of laxatives to help me get regular. Whenever I have a lung infection it’s usually accompanied by constipation. Anyway I have to be hooked up to my gtube getting go lightly all day and also take 3 other laxatives which are in pill form. I’m going on two antibiotics that I’ve never tried before for a different approach. It treats a type of bacteria which doesn’t show up on cultures. I’m going to be taking two of one antibiotic a day and three of the other one, for ten days, I’ll also no longer be taking the 3 time a week antibiotic at this time. In that ten days I’ll take 80 pills of just antibiotics! I have clinic Friday and if I’m not better by then then I’ll be admitted, the same goes for my sister as well.

I do talk about my health a lot of my blog and sometimes I do repeat stuff so I’m sorry if you’ve already heard about this, but writing about it helps keep my mind from running since it’s now all in one place. Thanks for the support!

Topic #2: School/ Hobbys

So I’m homeschooled, when I say homeschool I mean I do online school. It’s where I have teachers that I can call, text, email and do school work online. There’s different paces so it shows where your at and my teachers usually email me every couple of days with weekly news letters and tips. It’s really helpful since it’s flexible around how I feel. If I had a bad night and I need to sleep in I can, I don’t have to wake up at 5 in the morning and I can do school work at my own pace. It’s also good for appointments so I don’t have to miss school.

It took a while to convince my parents, and I have to do social stuff so right now I’m taking a art class. The thing about this is I’ve been recently missing some because of appointments and my health but what can I do. I want the be involved with animals in my future career but just not a vet. I want to work with animals first to get a feel for it and make sure that’s what I want to do. I want to maybe take a jewelry class and do some more ice skating but not necessarily take a class for it. I don’t really like day camps and stuff but if I find one I like I can give it a try.

I want to pursue my blog more and start selling some of my artwork and jewelry, it’d be a cool thing to do. I want to start getting more involved in the cystic fibrosis community and help fundraise some more and help inspire others. I’ve been playing with the idea of making stuff for kids in the hospital, I know how hard it can be and I was lucky enough to not be in patient at such a young age. I want to make blankets and customize some stuffed animals. I customized one of my stuffed animals with a “picc” and a gtube. It’s my hospital buddy. My friend gave it to me as a gift when I was admitted for the first time almost two years ago.

I’ve recently been into sandbox, a app where it’s basically paint by color, my friends got me into it. I’m uploading some on my blog but I’ll be honest there more for filler posts. I’m not sure if you guys like seeing them or not, I’m trying to post everyday. I need to take time and work hard on some content other than spewing some stuff out. Let me know. I want to spread my horizon with some new art ideas, it can be anything to do with drawing, painting or even topics to write on my blog. If any of you have some ideas just comment them, I’m a fan of trying some new stuff too!

Topic #3: My Dog

I guess I’ll just start typing til I figure out what I’m going to be talking about so I can change the topic name. (It’s currently a question mark) #behind the post, oh how that sounds so cheesy.

Hmm I guess I’ll talk about my dog. Her names mya and we’ve had her for a year. She a chocolate lab and she’s crazy. She doesn’t bite (only on accident) and she’s the perfect size. She’s around 60 pounds but she’s short. She’s a little bit below my knees and I’m almost 5’4, not like I’m tall, I know I’m not! The thing is she’s a pain sometimes. Like I live in the “country” and the houses are spread out. Behind my house is a neighbor who I’m going to call I, now I has a dog named coco, she’s so fluffy and shy but she’s so cute. Mya always goes to play with her and we usually have to go get her. She’s ran to our friends house who lives across the street which doesn’t sound to far but it is where I live. Other than that we’ve had someone call us and someone return her, now those people are far away!

We recently bought her a collar to train her to stay inside our property, we obviously don’t have a fence but it’s at least 2, 2 1/2 acres of land.

She likes to bark at everything out our kitchen door (glass doors). She’ll let us know whenever there a squirrel or deer or even just the wind. She’s not a very “talkative” dog but she can when she wants to. We took her to a training class for a month or so and it didn’t help that much, we might take her to it again.

(BTP (behind the post) maybe I could do a picture compilation of her once a week..hmmm…ideas ideas)

Anyways here’s a picture of her, she’s usually not this calm or cuddly.

Topic #4: Horror Movies

WARNING, CONTAINS SPOILERS

Me, Annabelle and V have been watching horror movies since V loves them and I want to like them. So far I’ve watched

1. (Half) of the shining

2. A quiet place

3. The boy

4. The open house

5. The forest

So I’m going to reveal them in a non official way…

1. The shining

So far I don’t find it that interesting, it’s this guy that took a job as a caretaker for a retreat in the mountains. The last person that took care of it went crazy and killed his family. This guy goes crazy too and try’s to kill his family but they end up escaping with the help of one of the employees that works in the resort during the spring time with lots of things happening including there son being possessed by something, like I said before I don’t know the detail of how it ends. I know I said I only watched half of it but we stopped watching it because it was boring, but my friends told me the rest, (but not specific details).

2. A quiet place

10/10 would recommend, it’s the future and these aliens have taken over, their blind but they have super hearing. Millions have died and who knows how many are still alive. I’m not going to spoil this one because it’s new. John Krasinski or who I like to call Jim was not only one of the directors but also the main character.

3. The Boy

It’s about a doll. Not really. It seems possessed but like my fiend kept telling me you’ll see. It’s about two parents who lost a son from a house fire, to help them cope they got a doll that looked just like him. He would eat, learn, listen to music, and move. The couple puts him in the hands of a nanny and she doesn’t realize what’s she getting into. At first she didn’t follow any of the rules which include feeding it, reading it story’s, homeschooling it, talking to it, ect. Then weird stuff keeps happening. She eventually thinks she’s going crazy until her and the grocery delivery guy figure out it actually moves. Turns out the son was crazy and living in the attic the whole time, eating the food, turning on the music, moving the doll to make it seem like it was alive all while getting through the walls of the mansion. Enough said I was relieved by the end of the movie to find out that there were no ghosts or spirits involved.

#4. The open house

To sum it up and not spoil it to much a family who just lost a father and husband temporarily move to a relatives cottage while it’s in the selling process. Weird stuff keeps happening and it turns out there’s a serial killer who goes from one open house to another and killing them. I won’t ruin the ending too much, if you want to know, look it up.

#5 The forest

A twin sister goes into the suicide forest in Japan with a class of her students, she wanders off. When her sister finds out the news she goes and looks for her. Soon weird things start to happen and some stuff goes down. Watch it to find out because I’m not spoiling this since it wasn’t made too long ago.

Topic #5: Random

I’ve probably spent a hour or so writing this. It’s currently 11pm and my dogs going crazy. Oh ya me and my sister finally redid our room. It’s not relevant but this is called random for a reason.

Fun Facts!

 McDonalds calls frequent buyers of their food “heavy users

The average person spends 6 months of their lifetime waiting on a red light to turn green

There’s more public libraries than McDonald’s

The British royal family isn’t allowed to play monopoly

Most toilets flush in E flat

Approximately 40,000 Americans are injured by toilets each year.

Ketchup was sold in the 1830s as medicine.

“Almost” is the longest word in English with all the letters in alphabetical order.

“Sean Connery” wore a toupee in all his James Bond movies.

It actually takes 142.18 licks to reach the center of a Tootsie pop.

You’ll eat more than 35,000 cookies in your lifetime (probably).

Fredric Baur was the man who invented the iconic “Pringles” can. When he died, his ashes were buried in one

Ignore this if you aren’t confused on names

L is my doctor, l is the first letter of her name

I is for my neighbor who ps nick name is related to the name of my street because he takes care of the dirt roads

V is my best friend, v is her nickname

End of explanation

That’s all for now, bye!

-A&W

My Illness: A Poem

Sometimes I hate my illness

I mean really hate it

I feel as though I’m always canceling plans

Staying indoors

Not doing a lot

I don’t mind a lot of the time

But sometimes I do

I go back and think about how my life would’ve been different

If I didn’t have an illness

Would I have never met some of my friends

Never been really inspired to do something in the world

To make a difference

To start my blog or even art

Understanding stuff at such a young age

But also feeling as though I’m older than I actually am

If I didn’t have cf I probably wouldn’t be so understanding

So forgiving

So responsible

But I will never feel normal

I love to travel but more than half of my luggage is medical supplies

I always have to carry pills on me… everywhere

Sometimes I’m grateful for my disease

Not the physical aspect but the mental stuff

Yes I deal with anxiety and depression

Yes I’m stressed a lot

But I’m also strong

Sometimes I don’t feel like it

But if I wasn’t so strong would I be where I am today?

-A&R

Dear V

This is to my best friend in the whole wide world, cheers to our 5 year anniversary!

Dear V,

You are one of the most funny, caring, and supporting person I’ve ever met. You mean the world to me and I don’t know what’d I do without you. I’m so glad I met you. Other than my sister your the closest person to me. We’ve been through a lot together and you’ve always been there for me. We’ve had so many great memories together and late night talks. Like making a cake at midnight🍰and having spa days🥒and filming funny videos together📸. I remember when we first met, I’m glad it happened. Remember you even came over that day and we killed our grass with baking soda and vinegar and then Annabelle had water come out of her nose. You visit us in the hospital whenever we’re admitted and help me get through tough times. Remember when we were in the big courtyard just outside the hospital and Annabelle was being weird and her iv pole tipped over. Or when we rode on them. We always go on walks and talk for hours or watch movies. Or swimming at the high school pool and always getting Dairy Queen or pizza after. Sleepovers where we play board games, watch movies, film videos, and clean your room, or clean out our closet for the 100th time. Listening to music and talk or just sing along, doing our own things. We don’t even have to talk we just hang out and enjoy each others company.

Remember the story from this photo, and oh yes I’m going to tell it on the internet, we went downtown and wanted to try on dresses, we went to the two dress stores and you said oh it’s for a horse banquet but really we were just looking, and the lady kept asking if we needed help. And the next store we went to the lady was a jerk.

Remember spending New Years together and having a photoshoot. We seemed so young in this picture.

I love your inappropriate jokes and funny comebacks. Your like my older sister that I’ve never had and your my family. I love you❤️, and thanks for always being there even if your a pain in the butt sometimes😂

Late Night Thoughts

I’m typing this at 12:44am and I just realized I scheduled “yesterday’s post” for “last night” so… ya. I really need to check it more often. Anyways I can’t sleep because I feel like crap. Literally, I can feel mucus in my lungs and it’s very uncomfortable. I took my inhaler and I’m doing the arubika but it’s not helping. I’m not really sure what to do.

So to start off the topic of this post I’m going to talk about school. This year both me and my sister are doing online school because of our chronic illness and it just seemed easier. So far it’s good. Most people would think it’s easy but it’s hard if you don’t have enough will power and aren’t responsible. A lot of it is up to you. I have to check my emails everyday, go through my work and see if I’m behind in any of my classes, work on classes and if I have a question I have to contact my teacher through email or text, I’m not sure if I can call them but I usually text or email. Luckily every teacher does a public video chat thing a couple times a week and I can go through the concept we’re working on and ask questions then.

Moving on to the next topic, careers. Because of my age I shouldn’t be thinking to much about my career but I honestly like to. I’ve always known I wanted to do something with animals. I remember before I moved I would always play “doctor” on my stuffed animals, aka a vet. Now I don’t want to be a vet now but I still want to do something with them. I was thinking either training like service dogs in a business that does that or work at some sort of rescuing shelter. I still might do something in art but maybe I could get a major in animal stuff and a minor in art so if I want to switch careers or do a side job I can do it.

Next topic, are tomatoes a fruit or vegetable. I remember in 4th grade gym fighting with this one person about this topic. We eventually asked the gym teacher and she didn’t know either.

Occurring to en.oxforddictionaries.com

The tomato is a fruit.

There… debate concluded…

Also update on my mucus situation right now I still feel like there’s a lot in there so what I did didn’t help but I’m getting tired so hopefully I’ll be able to fall asleep. Also me and my sister share a room and she’s snoring… she usually doesn’t snore so I had to put this in here.

Upcoming stuff

November 2 (I think) I’m getting another sleep study done to see how much I need the air pressure on my bipap machine. I need this because when I got my last sleep study done it showed that I breathe really shallow at night, aka I don’t exhale enough at night, aka I have to get a bipap machine… yay?!… I’m not looking forward to having to wear that for the whole night… for the rest of my life.

Anyways that’s all for today’s post, this was typed on the 20th/21st of September night. I decide to add this days day of the quote in this post too…

– A&R

Yesterday, Today, Tomorrow

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Yesterday I was happy. A little girl that was innocent, with the whole world on her shoulders. A ray of sunshine. Not a care in the world. Full of energy and joy. She loved to play. Letting her imagination run free. Playing with friends and climbing on monkey bars and trees, doing cartwheels all over. Going to school and loving life. Jumping in chalked squares and jump ropes. Riding her bike and feeling free. Feeling the wind in her hair and the adrenaline in her veins. Not caring what others think or others opinions.

Today I am struggling. Not innocent anymore. Having my whole life stresses on my shoulders. No energy and not normal. Definitely not normal. The hospital is my second home. Depression, Anxiety, Stress. Panic attacks weekly. Reality slowly replacing the happy girl I once was. Seeping into all the cracks. Today I experience the reality of my disease. Creeping up to me when I least accept it. Having bad days more than good. Instead of loving being around people I like being alone. Finding comfort at night. The stars shinning just like I once was. Letting my thoughts run free, even though I feel trapped in them. Loneliness and guilt comes and goes. Writing my feeling out. Painting them away. Blocking them out in music. Feeling as though the only ones who truly understand are online.

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Tomorrow I accomplish my dreams. Travel around the world. Sell my art. Spread awareness. Pursuing my dream job and loving life. Although I still have bad days I am more positive. Although I still struggle I have lots of support. I do crazy stuff. Go cliff diving, maybe skydiving or get a tattoo. Living my life to the fullest. Falling in love or filling my house with pets and art. Going to London, Italy, New Zealand, France. Learning about different cultures and art.

My 65 Roses Story (Cystic Fibrosis)

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!Disclaimer this is going to be a long post!

So I’m writing about the last year and a half. I’ve been having a lot of health problems and a lot has happened so I’m going to write about it, yes I have wrote about hospital stays but when this domino effect happened I didn’t have my blog yet. Just a heads up I was diagnosed with Cf at 3 months and I’ve been pretty healthy lung wise (never had any problems until I was 12), just a lot of digestive problems which I still struggle with.

January 2017: When it all started

One night in late January I was having a hard time breathing and my inhaler wasn’t helping. Now if I felt this way now I wouldn’t have gone to the ER because when I’m sick its how I feel but back then I didn’t have much problems so it felt bad enough to go to the ER personally. When I got there I did some nebulizers and they didn’t help so I got an IV and was admitted overnight. The next day the doctors said I sounded good and my xrays were good and since I wasn’t having any problems I went home told that I had asthma. A lot of people with Cystic Fibrosis also have asthma so it wasn’t that surprising, also my mom and sister have it. After this I was getting a lot of sinus infections and often got sick with colds but since I have cf they last two weeks where someone without cf would only last a couple days. The colds would always end up leading to sinus infections.

In march I was admitted for the first time. I had a lung infection and this was the only time I wasn’t admitted without my twin sister. I was in the 27th- April 7th. I then did two weeks of IV antibiotics at home. After this I’ve never had an appetite. I was also coughing a lot and had chest pain too. My doctor thought it might be cf or acid reflex so I got a bronchial scope and a Esophageal Manometer. Before this I was put on a acid reflex med. The bronchial scope was actually good and the level of acid reflex I had was fine. My doctor decided it wasn’t cf related.

I started Physical Therapy for chest pain in May. Turns out there was a bigger space in between some of my ribs. I did PT over the time of a month, going once a week to a place near my hospital that’s an hour away. Around this time I got a CT scan for my sinuses since I was in a lot of pain. My right sinus cavity was filled and there was a bone erosion starting to grow around it. We scheduled sinus surgery. I got the surgery sometime in June.

The physical therapy helped my chest pain and when I was done I still was supposed to do some exercises at home. The problem is I was still coughing a lot. This was very hard on me because I hated coughing a lot especially in school. I started speech therapy for having VCD, Vocal Cord Dysfunction. It was a pain in the butt, but it helped. VCD can cause a lot of symptoms including coughing and breathing problems. Typically the cough is caused by a tickle in my throat.

I got admitted again in August. I was there from the 18th-28th. This time my twin sister was also admitted because of Cf. After I got discharged I did two weeks of IV antibiotics at home. Like I said before I never had a appetite anymore. We were talking about me getting a gtube. I was nearing 89 pounds. I got a gtube November 3rd. Since I was having a lot of breathing problems my doctor was trying to figure out why since we always sounded good and our pfs weren’t that low. Both me and Annabelle started PT November 17 and it went through December 19. My doctor and the physical therapist thought it might be because of posture (honestly I though it was stupid) and then after we still did specific exercises at home. It didn’t help.

In December me and my sister both got admitted the day after Christmas. We stayed in til January 2nd. It was an interesting experience since we were in over New Years. It was actually pretty cool. We could see some fireworks from my window and we watched the ball drop on TV. Then our nurse came in and asked if we wanted glow sticks. It was an interesting experience.

From there on out we were getting admitted every 3 months. I kept having an allergic reaction to what we thought was the antibiotics I was on. The first time I just got itchy bumps near my picc site the second time I got hives all over. I remember it was picture day and I had to use makeup to cover up to rashes on my face. I did this whenever I went to school because I didn’t want people to ask me why. People still asked. I got allergy testing which hurts because I had to get shots to see if I was allergic to stuff. The shots create a bubble of your skin and it burns. It turns out I was allergic to the cleaning stuff the whole time.

On March 13th through the 23rd I was admitted again. Every time I get admitted I have to get put under to get a picc. I tried to do it bedside once and It hurt and I was really anxious and tense so they couldn’t get the picc through. Again I was only admitted for a little over a week and I had to do two weeks of IV antibiotics when I got home.

The next time I got admitted we decided to stay two weeks in the hospital instead of doing one week there and two weeks of antibiotics at home. We did this to see if it changed the amount of time in between hospital stays. I was admitted along with my sister on June 5-18. On July 4th we left for Paris for two weeks. We were doing therapy two times a day and walking 7 plus miles a day. We got admitted when we got back. I was really frustrated because we were doing so much and I thought we wouldn’t get admitted so soon. On August 9-20 we were admitted. We were only going to be in for a week and do two weeks at home since it didn’t do anything but my doctor wanted us to get another bronc and a ct scan of our lungs, also Annabelle was getting a gtube. They didn’t find much except I had some inflammation. But whenever we were admitted before we went on a oral antibiotic and a steroid.

Through this whole thing I’ve gained around 15-20 pounds. I’ve also been dealing with a lot of anxiety and depression so I’ve been going to see a therapist and I’m currently on a antidepressant and a as needed anxiety med. Before I went on the as needed anxiety med I was having a anxiety attack every night. I also would have some during the day. I have social anxiety along with generalized so I have some in crowded places too.

I also still struggle with constipation a lot, I know TMI but its just a part of having Cf.

So that’s the story of the past year and a half.

That’s all for now, Bye!

-A&R

Random Post of the Week! Number ?

Random Post of the week!

Yes I haven’t done one these in around a month but I think it’s funny how I say random Post of the week when there always a month or so apart. Anyways this post is going to be just that…random! Let’s get onto it…

So music. Like most, music is a escape for me. I like listening to the upbeat rhythm that makes me happy, or inspired. It can block out noises and help lift my spirits. It also helps me concentrate sometime, say I’m doing homework and I listen to music it just makes the whole homework part less miserable, hah that’s a musical. Also I love listening to music while cleaning or doing art.

Most people think that if you read your a nerd. I mean it’s not like I read textbooks. If you asked me a year or so ago if I liked reading I would say no. But since I’ve found wattpad which is a reading app where people can also write story’s I’ve read a lot. I’ve read 90 page books in a day. It may seem like it’s not that much but when I say a page I mean more of a chapter. On wattpad you scroll down instead of over and instead of multiple pages it’s really just one, but it’s a whole chapter. I’ve also probably read over 30 books on that app. I also read the whole maze runner series in a week. Each book had over 300-400 pages and there’s 5 in the series. I also read 4 books in a little amount of time. I like reading because like music it’s an escape from my life. Which sounds kind of depressing but when I’m reading it’s like I’m the character and not a person with cf.

Being in the hospital is a experience. I mean i know I’ve been here a lot the last two years but each time something is different. Usually I know most of the nurses which is comforting because there not strangers. Also the transport people I know. Each time there’s something different. Either is being they added movies to the tv or med students graduated to nurses. When I’m first admitted I’m usually just anxious not depressed. But I’ve noticed that at the end of my hospiral stay I’m always depressed and it’s like mind what the heck I’m literally being discharged in a couple days.

I’m going to try and find a new laptop. Me and my sisters are old and they don’t work. Especially since we’re doing online school this year we need that. My dad said he wants us to get hp computer so I’m going to look soon. If any of you have a recommendation please say it in the comments it would really help.

Anyways that’s all for now, bye!

The A&R Journals: Hospital Diary’s #9-10

Day #9

(Wood pallet things)

Today I woke up at 8 and did therapy around 9. Then I got my meds and me and my sister went on a long walk after rounds. We were going out on a leave on pass today when my mom came to the hospital. We ordered lunch and watched Deadpool 2. I painted and we went on another walk. I like going on walks in the hospital because it’s like a little bit of freedom. It sucks being stuck in the same room for a week and since we’re not really supposed to walk around on the floor (even though we do sometimes)we go downstairs. We know our way around the hospital, this hospital stay we found some stuff. By the cardio vascular center there’s a java Juice or whatever it’s called and in the cardio vascular center there’s a Starbucks and a cool waterfall thing. We also found out about a outdoor garden thing.

When we went out we went to Joan’s, target, and Barnes and noble. At Joan’s Annabelle got some fabric to make a tie blanket like mine and I got some wood pallet things to paint on. At target I got some face wipes and lotion. And I obviously got books from Barnes and noble. When we got back we ordered pizza and rented a movie called ready player one. It’s a really good movie. I also had to change my gtube button, I changed it about a month or so ago and you can change it every one to three months but I changed it so soon since whenever I opened it stomach juices came out and that means that there was a hole in the ballon that keeps my button in place. Also when I took the water out of the ballon when changing it it only had 3ml of water and we put 4 in so that means it was leaking too.

I’ve been having some problems flushing my picc, my nurse couldn’t flush it and when she did it’s really hard. I started getting heparin locked instead of saline so hopefully it gets better in the next few days.

Day #10

Yay only four more days!

So I set a alarm for 7 and 7:30am last night so I could wake up earlier to take a shower, also because I like waking up early because not a lot of people besides my nurse comes in earlier. I ended up actually getting up at 9. Respiratory was 1 1/2 hours late so my whole treatment schedule is off. I’m getting pfts, and a ct scan of my lungs tomorrow. Also it’s back to doing pt. Today my grandma and cousin visited, my cousin got me and my sister a lot of smarties and a pack of big Reese’s. My best friend Vanessa visited for a while and we went on a walk like we always do. I took a shower and got my dressing changed. In about a hour we’re going out of a leave on pass again and going to a dog park with my mom and dad, my dad brought mya (my dog) from home so we can see her. We’re probably going to go to jimmy johns too.

That’s all for now, bye!