Wednesday, March 7, 2012

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!

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