We had another long weekend, but all is good now. On Thursday, Meredith's seizures didn't stop so when I got home from work, we decided to go to the hospital. Greg and I are getting good at this routine and knew to go straight to Children's and bypass Milford Hospital. We checked into the ER and Meredith was hooked up for monitoring. They tried several medications with no success to get the seizures to stop. They continued until 7am the next day resulting in a total count of 35 seizures. She would seize every time she woke up and then pretty much pass right out again. It was taking such a toll on her little body, you could see how depleted she was. Finally, something they gave her worked and she did stop. The last one she had was 7am Friday morning and she has been seizure-free since. Once they stopped, she was happy and smiling almost immediately, almost manic and hyper. She was awake all day and took no naps. Greg stayed with her that night at the hospital since I had done the night before (they only let one parent stay) and he said she was awake ALL night. Doing her little yelps and laughs all through the night. What is she laughing at!? He slept snug as a bug on a windowsill hospital bed (joke) and also logged in zero hours of sleep. The next day, she continued to not nap and also continued to not seize - we were thrilled. They told us we could take her home and we were out of the hospital around 3pm. She is on her regular Trileptal and they are supplementing with another anti-seizure med called Keppra. So right now she is on two. We go see the Neurologist soon to discuss the best treatment going forward, but for the time being, she will remain on the two.
Today, Meredith is back at daycare and I think she was happy to see her buddies again. They are playing "Minute To Win It" this week. They give each child a magazine and whoever can rip out the most pages in one minute wins! I think Meredith got smoked by Maisie, but I'm sure she put up a good fight : ) So cute, I love KinderCare. I talked with them about our weekend and they were supportive as usual. I couldn't dream up a better daycare scenario, I absolutely love this organization. So our count begins again and we are on day 4 with no seizures.
About Me
- LauraLew
- I thought starting a blog might be a good way to chronicle our adventures with Meredith and keep people informed. For those that don’t know, Meredith was born June 13th, 2008. She is developmentally delayed, undiagnosed (Edit- received diagnosis 8/19/11 - Atypical Rett Syndrome due to FOXG1 Mutation), and microcephalic. She has a seizure disorder, low muscle tone and Cortical Vision Impairment (CVI). She has made beautiful progress and continues to meet her “inchstones”, though she’s going at it on her own timeline. She is a happy girl who loves to be around people. She laughs a ton and cracks us up every single day. She loves sounds, squeaks, and music and is very vocal! Being parents of a special needs child has taught us so much and challenged us in ways we never could have imagined. We have learned to take none of our gifts for granted and to nourish every unique quality our daughter possesses. She has been an inspiration to many and while it has been challenging to not know what the future holds, we are reminded daily of how amazing Meredith is. Our goal is to never put any limits on what she may be able to do. Meredith will surprise us all!
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