Currently, we are working with the pediatric neurology team at Strong to try and pinpoint the location (in his brain) and kind of seizures Josh is having so that we know best how to treat them.
Over a year ago he had a 20 minute EEG that showed zip.
Finally, in December, with Medicaid finally moving along, we were able to pursue a 24 hour EEG for him. This revealed that he had activity in his brain during stage one and two sleep.
Last week, we went in for an MRI under sedation. That is a story in and of itself. Anyway, under full sedation nothing happened. However, they DID discover that he had nodules in his brain. They don't know what the significance of this is, yet.
So, I called my neuro and asked her to release my MRI and EEG records for comparison.
Now, the next step is to admit Josh to the hospital for a sleep study. Or as we call it, "Mommy and Joshie's sleepover party in the hospital with NO baby brothers allowed!"
When I know more, I will share more. But it feels like the more we learn, the more questions we have. It has been a very frustrating battle. All I want is my buddy functioning as best his can!
Friday, February 26, 2010
Welcome to my world.
So, Jake has been bugging me for a while now to start a blog to document and share my journeys in being a mom. I know that doesn't sound very exciting. But there are a few things about my situation that make my happy little family unique and interesting.
For starters, I have Epilepsy. This makes my daily life a bit of a challenge. The docs told to forget having kids, so I pretty much did.
And then there was Joshua. Born 10/30/05. He has a diagnosis of Autism and Epilepsy, as well. He is the coolest big kid I know. We face a LOT of interesting experiences thanks to him!
Then, well, we moved into our new house, 2 years ago, content with our situation and where God had put us, only to find out a week and a half later that I was pregnant with TWINS. Identical twin boys, Isaiah and Elijah, born 5 weeks early on 2/2/09. Izzy was born with tortocollis and developed plagiocephaly as a result. He got to wear a cool cranio-molding helmet for several months and receive physical therapy, but is doing well today. Being born early created a different set of problems for Eli. We have been in and out of the doc's more times than I can count with respiratory problems.
Today, we are a strong happy family, pushing through our struggles as best we know how!
Welcome!
For starters, I have Epilepsy. This makes my daily life a bit of a challenge. The docs told to forget having kids, so I pretty much did.
And then there was Joshua. Born 10/30/05. He has a diagnosis of Autism and Epilepsy, as well. He is the coolest big kid I know. We face a LOT of interesting experiences thanks to him!
Then, well, we moved into our new house, 2 years ago, content with our situation and where God had put us, only to find out a week and a half later that I was pregnant with TWINS. Identical twin boys, Isaiah and Elijah, born 5 weeks early on 2/2/09. Izzy was born with tortocollis and developed plagiocephaly as a result. He got to wear a cool cranio-molding helmet for several months and receive physical therapy, but is doing well today. Being born early created a different set of problems for Eli. We have been in and out of the doc's more times than I can count with respiratory problems.
Today, we are a strong happy family, pushing through our struggles as best we know how!
Welcome!
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