today was what we call a sad day.

today was exhausting. there is no other way to describe it. basically i have been having some issues lately and we think i may have a blood disorder that sometimes comes when you have noonans syndrome. and me being the special little thing i am, might have this too.
i need to see a lot of doctors though ( all my main specialists ) before we can continue with a course of action & decide what exactly we should do.

today was a special day though, both mom and dad went to the doctor with me. today i met with a NeuroOncologist at the cleveland clinic. Dont let the name scare you, it needed to happen. Basically after my surgery 7 years ago my surgen had to move to florida, then the surgen i followed up with passed away last summer of cancer, and so i was left without anyone to oversee my brain tumor case. and we were just left feeling a little uncomfortable about that. so today we met with an amazing lady & we decided some new things
1. i will continue to have yearly scans for a few more years, with slow growing tumors like i have sometimes they have a mind of their own and can just start growing again, so contrary to what the other docs told us, i still need scans. i was a little bit upset, but still understanding, it is so much better to be safe than sorry.
2. to figure out the blood disorder, i got lots of blood drawn today, she told me i would get 5 vials out and i was like "thats not bad" ... she lied to me! haha they took 9....and after that i was grumpy and hungry and needed a nap!
3. in reguards to my headaches im gunna see a neurologist at the CCF and hopefully change my migraine medicine. if you know me, you know i've put on weight over the years, and its basically from the medicine. so hopefully i can get off of it and lose about 15 pounds :)
 After my appt at the CCF me mom and dad went to Cheesecake Factory for lunch! it was delicious! we dont go to restaurants like that often together...especially when we all should be at work or school ;) hahaha! i got a strawberry lemonade & the baja chicken tacos with mexican rice and black beans! and the tacos came in corn tortillas so they were completely gluten free! it was basically delicious! we all split a slice of kaluha coffee cheesecake...i ate the top off cause there was no crust haha :) lunch was the highlight of today...

 So thats where we are headed as of today in reguard to me.

But today was not all about me. Today i got some horrible news, that seemed to come whirling in all within about an hour of one another like rapid fire.

Our family friend was diagnosed with Leukemia today. Her husband is a teacher at my dad's school & she is one amazing lady. She is probably the healthiest woman i have ever met, and i am still left completely shocked and heart broken. They have 3 little girls. if you could lift them up in prayer that would be wonderful. Her name is Alli

My aunt texted my mom today to let us know that my her friend passed we do not know any details, but its not just one of my aunt's friend. this woman is a friend to so many of my cousins, a few of my aunts. I do not know any details besides that her name was Amanda...if you could lift her family up in prayer tonight  and in the days to come that would be amazing also.

I apologize for this being such a sad post. there aren't many happy words to describe today.

Blessed by a Heavenly Daddy,

Shelby Elyse Taylor

p.s. i did get a nap!

Hope is the Soul of the Dreamer & Heaven Is The Home of my God

 So as i wrote in my last post, i have been having headaches...its been a consistent one for about 3.5 weeks now, in the back of my head, same place where it was when i got my tumor diagnosis.

 So yesterday i went to the Neurologist, i went by myself because i wanted to be a "big girl" and i told mom and dad "i'm 20 years old, i can do this" well, that was probably the first mistake. So i got there, they weighed me, measured me, i lost some pounds since my visit last year, so that made me happy & i haven't grown haha but i mean thats no suprise! Well the nurse finished everything, i signed all the papers, then i sat in the little room, all by myself and a few minutes later the doc game in. All perky and pediatric like, with his Shrek tie and black suspenders, and he said "no mom?" and i said "no dr. enlow, i'm 20 now, i can do this!" he just smiled and began to ask all the normal questions, then he had be hop up on the table.

I sat there, he looked in my throat, listened to my heart ( i quietly reminded him that i have a murmur, he always forgets, and i always remind him or else he panics & wants to send me right up to cardiology haha ) then he looked in my eyes with his little light, first my left, then my right, then my left again, then my right again, he did this for a while. I began to get a little panicy inside and then said "is there fluid? do you see anything weird?" because of the position of my tumor if it is growing i get fluid build up and become hydrosephalic and usually you can tell my looking in my eyes. He just looked at me and said, "i dont see anything crazy but i think we should do an MRI just to be safe", he explained that he couldnt say if the tumor was growing or not without a scan. I at this point was thinking to myself "i am a total idiot, i shouldnt have wanted to be a grown up, mom should have come" Then he had me track his finger with my eyes, and he noticed they were turning in, and i had to remind him i see the opthamologist for that and not to worry haha.

 I hopped down off the table and he started writing, writing writing and more writing, then he handed me my prescription refill for my meds, the script for the MRI and my paperwork from the day. As i looked at the MRI papers he circled "Pregnancy Test" i laughed and said "oh dr. enlow i'm not pregnant...i promise i am a pure little person!" and he said i needed to have one anyways...i guess he doenst understand that i mean im like the purest little person ever, like if i was pregnant it would be the second birth of Christ. hahah so that was a giggle to my gloomy day...but i still have to pee on a stick today i guess...whatever.

 So today i have my MRI ... at 2:15 at Akron Childrens... he wanted it asap, and i am glad, i just wanna know...if it is bad news they will ask us to go sit in the waiting room, if it is good news we will get to go home and we'll get a phone call...i've been through this, i know doctor speak!

So for now i realize God is in control, He is a Healer, He will NEVER leave me, He promises to never give me more than i can handle & i find peace in those things. The Lord just may have another plan in store for me right now than i was expecting, but we shall see. Thanks to everyone who is praying! it is appreciated!

Blessed by a Heavenly Daddy,

Shelby Elyse Taylor

a giant update from the tiny taylor

 The past few months have been what i would call adventurous. Everything has been new, most things have been great, while others have been not so great. But with every adventure there is bound to be room for a little failure, or even a little disappointment.
 Last ya'll heard i was extremely sick still. Since then i have begun taking lots of vitamins and supplements, conquered my detox, found out what foods i'm allergic to ( soy & wheat ) began a completely gluten free diet, and just tried to get healthy again. Well, the fevers stopped, i am not as weak or exhausted as i had been, no more stomache issues really, except for the occasion incident when i eat something i know i shouldnt, and i'm actually strong & what i would consider healthy for the first time in a very very long time. It is a complete answer to prayer, and i just wanna say thanks to everyone who has been praying, it was a rough summer and fall, but i think that now the new year will bring room for many great things with my healthy body!
 A little bit about Celiac Disease...basically i can't eat anything that has gluten in it, so that means any product that has any kind of flour, wheat, rye, oat, they are all out. So thats no bread, crackers, cookies, cake, dough, any rolls, breakfast cereals, all the stuff that has flour in it is out. and i mean out. If i do eat them i usually spike a fever and then ya know im extremely sick for days...it is not fun at all. But i have found alternatives and many restaurants offer G-Free menu's now :)
 Second, school. I switched from Kent State to the University of Akron, and this was a wonderful decision. I am in Akron's culinary/hospitality managment program and i am absolutely loving it. My favorite part is probably my Food Prep class, it is very hands on and that is one of my learning strengths. I am what you would call a kinestetic learner, i learn best when i can be actively doing something or touching something. To me, learning about food is absolutely magical. Each week we learn so many new techniques and recipes & i just really feel like i am in the right spot.
 Another praise is that i made a really good friend in my class. Her name is Meghan, she is a Christian & in my same program. We get along great, and she is a complete answer to prayer. I prayed every day for the first few weeks that there would just be someone in my major that truly loved the Lord and could be a true friend...then one day i was talking with Meghan about my small group and she flipped and was in one too & we were instantly friends. All i can say about that one is, the Lord hears our prayers! Sometimes it just takes a moment for him to respond, so be patient!
 The Family is doing wonderfully! Dad and Mom are both doing well, both still working, both still embarassing me all the time. Jordyn, Mark & Malakai are great! Malakai turns 1 the day after Thanksgiving & we are so excited! The theme is The Very Hungry Caterpillar, so that should be awesome! I'm making the cake of course! :) We call Malakai "Bean" i'm not sure where it came from, but i love it, and love him! Seth is well also, he is living in California and his soccer team that he coaches is going to Nationals in Florida next week, so i'd say he's living the life! I miss him most every day...its hard having your big brother live way across the country...it seems like another country.

I do have one Prayer Request ... as most of you know, last fall we got the news that my brain tumor was considered stable, well i have had a pretty bad headache for about 2 weeks now, and i am just a little worried. I told mama and dad about it a few days ago finally because i didnt want to worry anybody, but we have to be cautious. So i am going to the eye doctor probably this week to get my pressures checked and then hopefully get good news that everything is okay. I have peace in my heart that it is probably not mr. brain tumor, but i can not just assume, because these headaches are not fun. I've even been going to bed around 9 or 10, that never happens! haha. And if you are reading this, please dont panic, please dont start talking about it, i do not want any rumors spread, i am just solely asking for prayer that everything is okay! The Lord is in complete control & i find incredible peace in knowing that! "God is within her, she will NOT fall; He will help her at break of day!" Psalm 46:5 AMEN!

Alright, it's really late and this little lady has a big big week!

Blessed by a Heavenly Daddy,

Shelby Elyse Taylor

This is just a stop on the way to where i'm going, i'm not afraid because i know, this is my temporary home.

The past 3 and a half weeks have been extremely difficult. The weeks have been filled with countless doctor visits, blood draws, visits to the lab, days in bed, and consistent weakness, tiredness, and feeling all around horrible. I have been tested for everything from leukemia to lupus, a parasite to chrons disease to e-coli, every blood test has been run, all my counts have been counted, they have taken every sample possible, and still, no one knows what is wrong, the sickness that is attacking my weakened body is a mystery. And the mystery is beginning to really weigh on me. There are mornings when i wake up and i think to myself "why should i pray? we aren't going to find out anything today, so why bother?" but then i am reminded immediately of my life verse. Psalm 46:5. But this is beginning to really take a toll on this little body of mine. my veins have been poked so many times that by now they are in hiding, and my hands are bruised and scared. My stomache feels as though someone has taken a shredder to the insides of it, and my body has absolutely no energy. Most days i get up, go to work, and just push through the days, counting the minutes until i get to go home and rest, but a lot of days i have had to miss work. I keep getting fevers and no one knows why, nothing is normal, everything i eat makes me sick, and when i dont eat i get sicker.
 It all started about 3 and a half weeks ago, on a sunday night, i was at my friends house and a bunch of us were eating dinner, and i got a really bad stomache ache, i went home and got very sick that night, and missed the next day of work. Tuesday and wednesday i felt a little better, and then thursday morning i woke up sick again, i went to work and came home on my lunch break, then went back to work, well that night i got very very sick, alarmingly sick, and the next morning we went to the pediatrician, immediately he sent me to Childrens to get labs drawn, and from there we went. The next week i missed monday-thursday of work. My mom and dad left for vacation that wednesday ( mom didnt want to leave me home sick, but i made her ) and thursday i went to a gastroenterologist. ( My big sister jordyn drove up and took me)  He sent me to childrens for labs and we scheduled a colonoscopy. All the labs from both doctors came back fine, nothing was showing up.
 Yesterday i had my colonoscopy, and they found out a few things, some of which are a little embarassing and which i wont mention. hahaha!!!!! but...at least we found out what is kindaaa-wrong. I have to stop eating dairy, i can't have any foods with corn syrup in it, and we will go from there. I got medicine for the one problem too which is good. The one issue is, we dont know why i keep running fevers, so today i went back to the pediatrician, i have to start keeping a fever journal and log morning and night what my temp is, and see if we notice any patterns. I also have to start taking probiotic tablets to hopefully start helping my immune system.
On the way home from the doctor today we passed my old health food store called Cappabianca's...we used to go there all the time, and decided to stop in, i am going to get a consultaion with the owner, she is a Christian and she helps people with all kinds of problems get on eating plans and get their bodies back on track. I figure if a rhuemetologist, gastroenterologist, and pediatrian can't help me, maybe this lady can. :)
Hopefully within the next couple weeks or months we will have everything figured out...for now, i lean on my Heavenly Father...for He is the ONLY one who can truly heal.

The Lord is the everlasting God, 
The creator of all the Earth, 
He never grows weak or weary, 
No one can measure the depths of His understanding, 
He gives power to the weak, and strength to the powerless, 
Even youth will become weak and tired, 
And young men will fall in exhaustion, 
But those who trust in the Lord will find new strength, 
They will soar high on wings like eagles, 
They will run and not grow weary, 
They will walk and not faint,
-Lincoln Brewster (Everlasting God)


Blessed by a Heavenly Daddy,


Shelby Elyse 

Day 30 - Someday We'll Know

dear 3 people who actually read my blog,

 i am truly sorry that i have not written for quite some time. life in the taylor house has been quite the zoo, i often like to think of big words to describe what is going on and lets just say its been a dibockle in more than 5 ways. I think if i make bullet points of updates and then go from there it should be much much easier.

1. Grandma - She is off the vent! So that is a giant PRAISE to our Jesus! But...yea there always comes a but in our world...she is still not doing very well. There is still some kind of blockage somewhere and the past week she's been sleeping all the time and becoming more and more unresponsive...at this point more and more tests are being run, and we are all just praying for answers. I've learned a harsh reality in my life and that is called "doctors are humans too." Doctors are supposed to be the life savers, they are supposed to know the answers...but sometimes they just do not know what to do. Sometimes they don't know what is wrong or how to help. I hate it...but it is truth! So all i know is that grandma is not doing the best she could be. I think it was a week or two ago my mom said to me "well if she ever gets better it's not gunna be the same, she wont be up and cooking all the time" and it hit me like a ton of bricks...in my head i'm thinking " no mom your crazy " but in my heart i'm thinking "this can't be happening." My grandma bought me my first cookbook "Gold Medal Flour ABC'S Of Cooking" I still use it today...it's all coffee stained and drawn all over but it is very special to me...grandma instilled in me my love for baking...so imagining her not being able to cook, that is a hard pill to swallow for sure. I know God is in control. I understand that this is in his plan and that i have no control over the outcome but i just wanna scream thinking about it. I want to know if she is in pain and she cant say ... its just not fun at all anymore!!! Reality = im terrified of losing her, but i do not want her to suffer. Alright i think that's enough on that...im feeling sad i need to feel happy! CONTINUE TO PRAY!

2. Seth - He's been in California for a few weeks now and he is super duper busy all the time...but he is doing well, stressed out at times...but continuing to get all his work done and still have time to chat with me some nights...i try not to bug him too often, but hey i'm the baby sister it's my job!

3. My Eye - So i have an appointment on the 18th of May with a Surgen at Akron Children's Hospital to see if i'm going to need surgery or not. My eye seems to get worse when i'm tired or stressed...but it kinda is bothersome a lot of the time now so we need to just see what we can do!

4. College - Officially going to Akron next year...super excited for a fresh new start....also i'm sooo stoked about Elly and Jessica coming too....it's gunna just be so much fun!

Someday We'll know why bad things happen and why good things happen...but for now...i sleep :)

Alrighty, well this is all i can think of right now...i put up lyrics to one of my new favorite songs right below this post so go check it out...and the link to the video

Blessed by my Heavenly Daddy,

Shelby Elyse 

Please Pray

Please Pray for my grandma and my family today. Please pray for wisdom for the doctors and my family today, my dad, mom, and aunts are having a big meeting with my grandma's doctors today deciding the next course of action...also, please pray for healing for my grandma if that is God's will, and pray that she is not in pain. I am trying to stay positive and everything, but this whole process is beginning to weigh on all of us. I

was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away

I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth

I believe in Miracles, I have seen them, and I have been called one. I believe the Lord can perform a miracle and heal my grandma, if it is in His will!
Please Join me in Prayer

God Bless,

xoxo

Shelby Elyse

Day 27 - dont worry im alive

So i know i havent written in a couple days, i've been crazy crazy busy and have not had much time at home...i didnt even watch rachael ray today...that means im booked. haha
but tomorrow i will write about my adventures the past couple days
but please...continue to pray for a few things

1. my Grandma Taylor, really not improving, still in ICU, now she has a trache, pray for healing and then also strength for the rest of my family, this is a really rough situation.
2. Seth living in California, pray that he adjusts fine, does not become home sick and is a Light to everyone out there!
3. My eye...and finding out about surgery, i have had a headache the past couple days from it and it is really starting to bug me...
4 Chelsey, a girl i went to school with who is currently undergoing chemo for leukemia

thank you

God Bless YOU!

xoxo

Shelby Elyse ... now known as Shelbulb, Shelyse, or Arrowfoot...

Day 25 - A Prayer Request

So i was born with crossed eyes (aka strabismus) and had 4 corrective surgeries when i was little...well over the past few months my right eye has been crossing in again and its beginning to really bother me and give me headaches. I got new glasses hoping the lenses would correct the problem...but they have not. So monday my mom is calling my pediatric eye surgeon and we're going to schedule an appt. We are not sure if he will decide to do surgery or not. I am worried though. I dont want to be a bother because we have so much other stuff going on that it has been kinda crazy around here, so i've been trying to keep it on the down-low, but it is the last straw, i can't take it anymore...just please pray for me not to be worried, and the doctors knowledge.

xoxo

Shelby Elyse