I was welcomed into the world, at 4:30 am on August 5th, 2006. I was in a hurry to come, mama and daddy were thinking I would arrive later that morning, but I had different plans. The midwife wasn't there in time and I was born into my daddy's hands. My mama thought that I was one of the 3 most beautiful babies she had ever seen. I had a very special few minutes with my mama and daddy, all by myself. This would later become increasingly special to mama and daddy as my health wasn't as perfect as it seemed to be.
When I was a couple weeks old my mama noticed several patches of non-pigmented skin on my leg. Thinking these were just birth marks, she thought nothing more of it but would loving look at them as a special part of me!
My mama thinks I was a great baby! She loved to carry me around in her Moby wrap and take care of the family. I loved this and would easily fall asleep to the sound of her beating heart. I loved to eat and cuddle and swing in my swing. My big brothers loved to shower me with affection and they had to learn to do that gently! I was growing and getting smarter and stronger every day.
Life was going really well for my little family. We enjoyed life in our little house and were very grateful for all that God was doing in our lives.
The Christmas season and my 4th month of life were fast approaching when I started becoming a fussy baby. My mama wasn't quite sure what to do with me, as I had been so easy going, she tried a couple things, that seemed to help for a bit but nothing long term. It was a little concerning to my parents but they thought it was something I would grow out of and continued to love me and try to make me comfortable. I was still pretty happy, except for those fussy times.
One morning during the first week of December(2006). Mama and Daddy were talking to me in my crib. I rolled my eyes and they thought that I was already starting some rebellious behavior at 4 months old and laughed it off!
I became increasingly fussy and started doing these abdominal crunches. This was very concerning for mama and daddy and was quite heart-wrenching for them to watch. A chat with my doctor made it seem not too alarming and probably just the brain trying to work out its patterns.
Over Christmas, these crunches started happening more frequently, up to 7x's a day. My daddy tried taking me to a dark room while these happened and it seemed to help some. I was comforted and prayed over each time. I was scared and afraid. I didn't know what was happening. I remember my mama and daddy's hot tears hitting my face and mingling with mine, with each crunch. These were hard days for us all.
My mama decided that this was not just the brain maturing but something a lot bigger was going on. She researched on the internet and found information about infantile spasms(IS) and Tuberous Sclerosis(TSC). She was pretty sure that I had IS and possibly TSC because of the white patches of skin along with IS. She knows this was God leading her to what would become my diagnosis a few days later.
She placed a call to my doctor who found out about a Pediatric Neurologist - new to the area the 1st of August - who wanted me to have an EEG as soon as possible. My mama was a bit scared but just wanted to find something to help me and stop all this pain!
Mama and Daddy woke me very early in the morning of January 5th, my 5th month birthday, so I could eat one last time before I had to have my EEG. They bundled me up that cold January morning and we headed to Johnson City to the Medical Center. The tech measured my head (which I hated) and placed little electrodes all over my scalp, my mama was then able to nurse me again, I feel asleep in her arms and the test began. The tech was a little concerned with some of the patterns but couldn't say anything, and he really didn't seem too alarmed. We drove back home a little more light hearted than before and hoping for a postive outcome.
We had no sooner walked in the door and greeted Tobin and Josiah, that mama's cell phone rang. It was Dr. Lehwald's nurse - the EEG was abnormal and we needed to come back to the hospital to have a 24 hour EEG to figure out more of what was going on in my little brain.
We arrived at the hospital, they put me in my own room and gave me my own little hospital gown. This was such a surreal time, we didn't know what to think, but I was just happy to be with my mama and daddy.
That evening, my neurologist came to see me. She told us that I have an irregular brain pattern consistent with Infantile Spasms and she wanted to do a Video EEG to catch one of my spasms along with the brain pattern to know more. She asked my mom some questions, who told her about the white patches on my legs. She looked those over and felt that I could have TSC. This was hard to hear but my mama and daddy were so grateful for God's leading in knowing about this before hand, it was easier to grasp and we were ready for action. They wanted me to be well!
I was in the hospital for 4 nights. I had a spinal tap, VEEG, MRI, kidney scan, blood drawn, B6 given (initial therapy to see if it would stop the IS, it did not), ECHO, more blood drawn, nervous nurses watching my bloodoxygen levels and kind of freaking out, many fussy times and being totally scared of what was happening to me on my 5th month birthday.
I had many visitors and lots of people praying and sending their love to my family and me. I know that is what held my mama and daddy up during those rough days.
I was discharged on ACTH, a steriod, that has been used to help reset the abnormal brain pattern which causes IS. My doctor found an aggressive schedule and wanted to try it with me. My mama and daddy would have to give me these shots 2x's a day in my leg. It hurt a lot and I was scared to be laid down and scared to see the needle. but, IT WORKED! 2 days after starting ACTH my seizures stopped and didn't come back! My doctor called this a miracle and we did too!
I came home receiving shots twice a day until the first of February and that was it. I had a follow up EEG and it was clear! I was healed of IS...and that is commonly impossible but we knew with God, all things are possible!
I was seizure free until April...almost 3 whole months, when I started having Complex partial seizures and was put on Keppra. I stopped having them for a few weeks but they came back and have continued since then. I've added some Tonic seizures and myoclonic jerks to my list now. I'm still taking Keppra and have added Lamictal. Both of which I take very willingly.
My mama, daddy, Tobin and Josiah, look at me everyday and are grateful for the life that I have, and for being in this family. They love me very much and I love them. I think I have a long road ahead of me, God knit me together and He knows, that's what my daddy tells me, He has a plan and I will trust Him.
Thanks for reading my long story. Keep praying for me, it is still very scary for me to have seizures, I just don't understand.