Now and Gwen
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- 6 Months Old 23 hours ago Our munchkin is now 6.5 months old, and we are just over 11 weeks seizure free. Crazy to think about how much time has passed since she arrived. On one hand, it feels like it’s gone so quickly, and on the other, it’s been excruciatingly slow in some regards. I still find it hard to […]
- 8 weeks seizure-free 3 weeks ago A month has gone by and I haven’t had time to post! Things have been very, very busy. Firstly, on the infantile spasms front, we’ve gone just over 8 weeks without a spasm (I think). This is great news! Vivian still has some very strong startles sometimes that make me wonder if they are...
- We made it to a month! 1 month ago Happy Samhain and Beltane! It’s been 4 weeks (and one day) since Vivian’s last spasm! We are quietly hopeful about this. Her last does of prednisolone was last Monday. We haven’t had any follow-up appointment with our neurologist, though. Not sure if we will? We did have a follow-up with...
- 4 Months! 2 months ago We’ve reached the point where I think most parents start counting their child’s age by months instead of weeks. It’s very hard to believe that we have come this far, after Ben was told Vivian wouldn’t make it on the night she was born. On the infantile spasms front: No further seizures...
- Starting Over 2 months ago We are back to day one, after making it to 5 weeks and 2 days of no seizures. Vivian had some on Thursday morning. It was a very sad morning for Ben and me. Heartbreaking. We started weaning her off the prednisolone over the past few weeks. This week, she is down to 2ml a day. Our […]
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