Neuro Results

Just got the Neuro testing results over the phone. I ranked in the 95th percentile out of girls my age on all the testings so I have not suffered any brain damage or psychological problems. This is all good news but still disappointing in its own way. So now we just have to wait for more test results and more tests to be performed I suppose. At the latest we will receive MRI results by monday. We are currently working with our insurance company to get an MRA approved. The MRA would be a major diagnostic tool if any abnormalities show up, as the doc guesses Vasculitis may be whats turned my world upside down.

Just this week all my friends have started to visit and check up on me which feels really great. I'm pretty sure at least 3 people want to visit this weekend! Visits do make me very tired though so I hope I'll be well enough the day after. Pretty much any time I expend energy, it can be counted on that I will spend most of the next day in bed.

I also have signed up to participate in my high schools Relay for Life event. For those of you who don't know, Relay for Life is a 24 hour event to help fight and cure Cancer. We set up tents on our football field and walk around on our track. At least one person for each team must be walking at all times. I will most likely be sitting 99% of the time so I feel like I should be fundraising more than the rest of my team. I am also making hair ribbons for all the girls on our team. I would highly appreciate it if all my followers, friends and family could make a donation of any size to my Relay for Life team. Donations can be made on my Facebook page or athttp://main.acsevents.org/site/TR/RelayForLife/RFLFY10GW?px=15219408&pg=personal&fr_id=21658

If you have any difficulty getting to the donation site just give me a shout and I'll point you in the right direction. I will also be sending out e-mails from my Relay account which will provide instructions. I really believe it is my duty to fight for other people who are sick even when I am. I can't do much right now, but sending out e-mails and asking for donations is the least I can do. A teacher in my school just passed yesterday from multiple tumors. Please help me raise enough money to help stop Cancer from taking any one else. Please tell your own friends and family about this event and ask them if they would be willing to donate. Any size donation is appreciated, every penny counts.

I hope you all are well and I will continue to keep you all updated. And please donate!!

Love,
Emma xx

Updates

Hey sorry its been a long time but I've been sleeping a lot. We got the EEG results back and I do not have a seizure disorder. My pediatrican just spoke to the specialist I've been seeing and they are going to order an MRI. I get the Neuropshyc test results back tomorrow. Will let you know once I've found out. Thanks for following.

Love,

Emma xx

Neuropsych Testing

Today at I underwent another diagnostic test at Children's Hospital. I had to wake up at 7am to get there on time, which is super early for me. The test today consisted of several memory, cognitive and strategic questions and tests to determine how well my brain is functioning. Some of the activities I found simple while others I found extremely challenging. The hardest part was that the questions I struggled with I know I used to be able to answer correctly but now I cannot.

These tests were supposed to last from 9-2, but being the speedy person I am I managed to finish all the tests by 11:30! When I finished I realized how tiring they had been. We will get the results back May 7th, but until then we're waiting.

We still have not heard back yet about the EEG test. Waiting is getting really tiring especially since I've started getting new symptoms, such as headaches. Also the swelling in my hands and feet are becoming more and more noticeable as is the blue tinge they have taken on.

My heart rate still beats about a mile a minute and I am more often than not, out of breath. I've also had a whooping cough for the last two weeks that just won't go away. I could have pneumonia again or bronchitis. Lucky me!

I'll keep you all updated as much as I can, but for now I am really tired and think I will go take a nap. Love to all!

Love,

Emma xx

EEG

Yesterday I went to Children's Hospital at 8 A.M. in the morning for an EEG. An EEG is a test they do to determine how you're brain functions. They place a lot of metal electrodes on your scalp with sticky paste so they can measure you're brain waves. First the flash a strobe light in front of your face to see if you have a seizure. I didn't but it made my face twitch like crazy. Then for five minutes they made me blow on a pin wheel for five minutes. The last thing they made me do was ask me to fall asleep. That was the best part of the test. Here's a picture of me all hooked up:

Mom says I looked like a Cyborg... whatever that is. That's it for now. I should get the results within the next week. Thanks for keeping up with me.

The Beginning

After a long and tiring day, including a trip to the ER, I find my self, yet again, unable to sleep. I have felt inspired to create a blog documenting my trials and tribulations so I can share with my friends and family, or anyone who just wants to know more about why I've disappeared.

I consider myself lucky to life this life and I wouldn't trade mine for anything else. My family consists of some of the most lovely, beautiful, caring and goofy people I've ever met. They do not doubt me, and support no matter what new challenge has been presented to me. My wonderful mother drives me to countless doctors appointments and is always by me side when I need water or help to do something. Her strength and determination to keep fighting keeps me in awe and I wish I could be more like her. My incredibly strong father is always there to back me up and he always validates me. He keeps me in check with reality and never focuses on the horrible parts of my life. And my exuberant sister. I may not have been the greatest or most supportive in the past, but I love her more than she could ever know. I want to be there for all her major events, and I want to be able to take care of her. I apologize to her for taking so much attention away from her, she deserves the spot light.

This last week has been the best and the worst of my life. The worst because my heart rate won't settle lower than 110 bpm and shoots up to 160 bpm when I stand. All my joints are swollen, I have open sores in my mouth, on my legs and head, my ears won't stop popping and I have now developed a whooping cough and piercing headaches that like to surprise me when things get a little to quiet. My energy is at an all time low but my spirits are high.

Tuesday, April 13th, I met with Dr. T. He specializes in rheumatology and immunology and believes after he performs a serious of tests he will be able to make an accurate diagnosis. He will be able to then treat me with the appropriate medicine, and possibly even cure me! Fingers crossed for the latter.

Now we are stuck with the grueling task of waiting for the tests to be performed and the results to be analyzed. Admitting me to the hospital is not an option because there is no way to expedite the process and they cannot begin any treatment till we have the test results. So until they come in, my family and I have to make the best of each day despite my pain, for the next month or two.

I will do my best to keep you all updated on my condition, how my days go and the outcome of the to be performed, EEG, Tilt Table Test and various blood work and analysis. Until next time, I wish you all well and the very best of health. Thank you all for supporting me or taking an interest. I now firmly believe that besides science and medicine, there are powerful things out there that none of us will ever understand.

Love always,

-Emma xx