I would like to introduce you all to our September Fighter: Andrew! He is an absolute doll and has the best mommy and daddy a boy could ask for! I am sure you will agree!!
Here he is! Chubby cheek smile and all!! There is Sammy too!
Our bad dream started shortly after Andrew turned 6 months old.
I call it a bad dream because everyday my husband and I pray we will wake up and this all would have been a bad dream. Around the time when Andrew was 5 months old I realized it seemed as if he had been regressing. I took him to the doctor right away but being a first time mom they brushed me off and told me I was just a nervous nelly. Then around 6 months he started doing this very strange jerking movement. Once again I took Andrew back to doctor this time with video and once again I was told babies do strange things, try not to worry so much. So I tried as best I could. But he didn't out grow those movements and it was becoming very clear that the skills he once had were not coming back. So I did some research on my own and what I found tore me apart. I discovered Andrew may be suffering from Epilepsy but what is that I thought? I had never knew of anyone who suffered from this. Even worse I discovered the type of seizures he maybe having were called Infantile Spasms; sounds innocent enough right? That's what I thought until I read on...
These type seizures are very hard to stop, they come with a high probability of mental retardation and also a high probability of developing Lennox Gaustaut Syndrome. We took him straight to the ER and after spending an overnight at CHOP getting a Video EEG our biggest fear was confirmed and thus our nightmare began. My mind rushed... Would I ever see my baby smile again? Just one of the skills he seemed to lose...
The doctor very causally put him on a steroid treatment and sent us home as if he had only a little cold. The steroids were a nightmare. He developed cushionoid syndrome and only slept about 3 hours a day. He was so uncomfortable and literally cried all day. It was horrible. But after a month or so I noticed the Spasms stopped. And I was teased with dream that the nightmare was over. We were finally awaken from this bad dream! Andrew was seizure free for about two months but the ugly epilepsy roared it ugly head again and took my baby from me ironically two weeks before his 1st birthday. We have been riding this roller coaster ever since just praying for the day we can rejoice because the bad dream has finally ended. Andrew has been on a few different types of medications and is currently on the Ketogenic Diet.
Andrew is amazingly strong and resilient. He will be two this September and he is the light of our lives. He beats the odds everyday. He walks and has even said Mama and more before. These are things we were told he would never do. He recently became a big brother and already is so in love with little Sammy!! We've learned to count our blessing at the end of the day, that's not to say I don't cry when I see my baby knocked down by a seizure. But if he can get back up and smile then so can I. Andrew is my strength and his laugh keeps strong on my weakest days. I know it is only a matter of time until this nightmare comes to an end.
This is what Andrew thinks of Epilepsy. I agree, do you?
Well that is my little buddy Andrew! I hope you enjoyed learning more about him! Please take a moment to wish him a Happy Birthday!!!
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