Sunday, February 21, 2010

Age 3 - 4 Years Old

After my 3rd birthday I began having outrageous sleep walking episodes. I began to scare my parents with how much I was running around upstairs in my room that they put me in their bed. Only a couple weeks in there and I had one of the worst sleep walking episodes that really scared my mom and caused us to move downstairs. For the next 4 months I slept on one couch on top of my mom and dad slept on the other couch. Mom wanted to keep me safe and not having any stairs was the best.

In February my mom was more concerned about the possibility of Autism she called and called to try to get back in to the Neurologist but she refused to see us - saying nothing was wrong with me. Mom knew different.

We did finally get an MRI approved only it wasn't for what mom wanted. She wanted my stomach scanned due to bleeding and pain and instead they did my brain. It came back normal.

I had to stay over for a day to monitor after the MRI due to breathing issues. f

In March mom was getting fed up and took me back to the doctor for stomach pains, bleeding, weight gain, and personality changes. I was no longer playing with kids or smiling. I had stopped showing emotions like hugging and laughing with my parents. I just became mean and reclusive. The doctor at this time was getting more and more upset with my mom and started making her feel like she was making it up. She requested the doctor refer us to a Nutritionist to discuss what we could do. I had gained over 35 pounds in one year.
About two weeks later Mom was amazed to receive a letter from a Nutritionist REFUSING to see us. Angry, mom decided we would no longer go to the doctor.

In June my eye turned out almost overnight to the left. I could no longer look straight. It was so sudden mom was scared. We were concerned there could be a tumor in the brain that was pushing on the eyes. My doctor ordered an MRI........that almost ended my life.

Mom took me to the hospital for the MRI - dad was meeting us there. He hadn't arrived yet so mom took me back to the room. I can remember sitting in the hallway with 7 doctors surrounding me trying to stick a needle in my leg and mom holding me in her arms. Suddenly the needle went in to my leg and I looked up at mom and told her not to leave. Mom was crying.

Then suddenly I began to get cold and in a matter of seconds I started going in to violent convulsions. My eyes rolled to the back of my head and I was flailing all over. The doctors came running and grabbed me out of mom's arms and took me down the hall. They escorted mom out and wouldn't let her see me. Mom ran back to the main desk and dad was there waiting. Mom was frantic and screaming and crying and dad had no idea what was going on. Mom told him and they demanded to know what was going on with me and no one would tell them. They made them leave the waiting area and would call when I was ready.

About 4 hours later they called mom and dad in. The doctor took them in to a different room and told them that I had gone in to a seizure and actually stopped breathing for 2 minutes but they brought me back. I would have to stay on a ventilator until I was able to breathe on my own. Mom was furious and couldn't look at the doctor so dad took over talking while mom came to see me. I remained in the hospital for one week.

Resting after getting the ventilator out. They had to stick me so many times to find a spot for the IV. At the time we didn't know what was wrong with me and that IV's don't really work with ROHHAD children.

I was very weak and had a lot of throat issues once they removed the tubes. Dad fed me at every meal and really took care of me. He never left my side. Mom was dealing with doctors and hospitals and trying to take care of me and work.

The only spot they could find to put an IV in was my foot.

It was after this visit in the hospital that my mom had had enough of the doctors and the multiple hospitals in California when she decided we needed better care and someone that would listen to me. She began looking for jobs and found one in Maryland and she would get me in to Hopkins.

This was my last day at school. I loved my school and my teachers but mom decided I needed a good hospital.
We were all packed up and ready to head east to Maryland. Over the two weeks of driving my mom began taking more notice of little things.

We were able to clearly see that my eye was turned out and not getting any better.

This was me in Oklahoma. I had fallen asleep and I was burning up. After about 30 minutes my eyes opened and I asked for food. My mom made my lunch and brought it to me then she realized that I was still asleep. I wandered around the cabin for a while and mom and dad couldn't wake me up to eat. They decided to throw me in an ice cold shower. It was so cold my mom's arms were frozen. She pulled me out after a minute and I was still unable to snap out of it. Mom put me back on the couch and after about 30 minutes I snapped out of it and wanted my food.

Little did mom know and we didn't find out until 2 months later - I was having a seizure at the time.
Here I am wandering around the cabin. I always look wide awake and functional to people who don't know.

Mom and I at dinner.

Me with my sister and mom.

We finally arrive in Maryland and I started hanging out with my grandparents a lot. Mom was waiting on health insurance to kick in before we could get me a doctor appointment. This was September.I love going hiking. Mom and dad would take me with grandma and grandpa every weekend when we first moved here.

This was the last weekend in September. My dad had gone back to California for our other car and we went to the Renaissance fair. It would be about 10 days later (and 9 days after getting insurance) that my world would change forever.

On October 10th, 2007, around 7:30pm I asked mom if I could go to bed that I was really tired. So she took me back to bed and I fell asleep quickly. Around 8pm mom was upstairs and dad was downstairs when mom heard me snoring very loud. She came back to check on me and closed my door a little. She went back out to watch TV when around 8:30 my snoring was even louder. She came back to check on me by peeking in the door and then went downstairs to tell dad about my snoring. Around 9pm she couldn't hear the TV over my snoring from down the hall and she decided she would come lay me on my side. She walked in to my room and I was already on my side so she came in closer. Mom started screaming frantically and dad was upstairs within one second of the scream. I had thick brown foam all over my face and was barely breathing. Dad instantly grabbed me and took me to the living room and layed me on the floor. Mom called 911 and during the phone call I stopped breathing twice. Dad performed CPR while mom kept talking to 911. All of the sudden we had 4 cop cars, two firetrucks and two ambulances on our front yard.

The medics came in and were sticking pins in my feet to see if there was any reaction. NOTHING....I just laid there stiff and my jaw was now locked. Nothing would bend. They checked my blood pressure and it was 190/86 and my heart rate was over 200. They swept me up and put me in the ambulance and continued to work on me for 20 minutes in the front lawn. They wouldn't let my mom or dad near the ambulance. Mom could see that they were getting the paddles ready as they believed I was going in to cardiac arrest.
Soon we were off to the hospital. I remained in my seizure for the next 45 minutes. During that time they took me back to CT and dad stayed with me. Mom stayed at the ER room with Grandpa. When they brought me out they told us "Sorry, we can't help you. We have to call Hopkins to transport you down there".

Around 2am we arrived at Hopkins which would become my life. We met with many specialists who did tests to rule out many different things.

This was my first seizure test for Neurology. The doctors were not able to explain what type of seizure I had but I received medicine for seizures at the time.

It was this time that we met with Endocrinology and he took us on to figure out what was going on with me. We spent the next two months testing for Cushing's Syndrome and lots of blood work. This kept coming up fine and there was nothing wrong. But he didn't give up. He decided with the stomach pains and bleeding that he would check me for pheochromocytoma. Which is a neuroendocrine tumor on the adrenal glands.

We went back to our lives.

I was ready for my first winter on the east coast! I was looking cool.

Christmas at G&G B-honey's house. My sister Kendall came out to spend some time with us.

Me with my mom
We drove back to Ohio for Christmas and we made lots of Christmas cookies.

I love video games and had a blast playing with my cousins.

On December 26th we drove back home from Ohio and planned to enjoy the rest of the break. On December 28th, 2007, my mom received a phone call from Endocrine. She had been waiting patiently through the break for my test results of the adrenal tumor. The call she received was not one she was ready to take.

"Your daughter has cancer"

She was informed that Oncology would be calling to schedule appointments going forward.


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