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!
Wednesday, March 7, 2012
Thursday, December 29, 2011
Our Dancing Song
so for my dad's christmas present i got him a record player...but i also wrote him this song & then recorded it for him...its pretty personal. the first verse describes a dance recital i was in when i was 5, and he was in it with me. the second is my senior prom. the chorus, basically when i was little my dad and i always dance around the house, to james taylor, van morrison, all those guys, and so its a picture of my childhood. the last verse describes what is to come (if it is in God's will for my life that is) i guess we will just wait and see...but here are the lyrics!
Our Dancing Song
i'm in a red tutu
you're in a black suit
dancing me 'round on the tops of your feet
oh daddy, its you and me
i'm in my prom dress
you're on the stairs stressed
waving goodbye to my handsome date and i
oh daddy, i wont be home late
(chorus)
so lets dance the night away
just you and me
sway me back and forth
twirl me around
i wont ever get bored
cause with you daddy i would dance
all night long
& this is our dancing song
i'm in a lace gown
your smiles upside down
he promises that he'll take good care of me
oh daddy, just wait and see
Our Dancing Song
i'm in a red tutu
you're in a black suit
dancing me 'round on the tops of your feet
oh daddy, its you and me
i'm in my prom dress
you're on the stairs stressed
waving goodbye to my handsome date and i
oh daddy, i wont be home late
(chorus)
so lets dance the night away
just you and me
sway me back and forth
twirl me around
i wont ever get bored
cause with you daddy i would dance
all night long
& this is our dancing song
i'm in a lace gown
your smiles upside down
he promises that he'll take good care of me
oh daddy, just wait and see
so lets dance the night away
just you and me
sway me back and forth
twirl me around
i wont ever get bored
cause with you daddy i would dance
all night long
& this is our dancing song
Words: Shelby Elyse Taylor
Music: Alexis Rosen & Shelby Elyse Taylor
Thursday, December 1, 2011
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
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
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