I know I am so over due for a post! Short and sweet, Lily is having really bad seizures. She is currently having 2-3 tonic clonics a day lasting over a minimum of a minute long each. She is also having her clusters and drops through out the day. We are still tweaking some things …
I can handle the truth. I prefer to handle the truth. This is why I have some struggles with my sweet precious Andi, likes to tell stories, Jane.We really went through this in Kindergarten. I am pretty sure I told these stories already, one instance my friend asks me “when can we come see these …
I’ll be an old lady in my death bed and still remember him saying to Lily, touching her face and saying “continue being awesome”. It was a heart breaking goodbye said to a very special family who touched our lives in ways I could never express and those were the final moments I remember of …
Oh. My. Lord. Six little 7 year olds was biting off way more than I could chew. And I can chew a lot. By midnight I was a nutty mama threatening to send everyone home. They took my threat and raised it. By 12:30am I took Andi aside and put the fear of God in …
When pregnant (by pleasant surprise mind you) with Andi Jane, I said to my OB, “You have to cut her out”. With no dx for Lily at that time I thought birth injury could still be a possibility and I was not willing to take that risk. My due date was March 31st 2005 and …
We had a very encouraging neuro appointment last week. I really love this new neuro, she is so cool and really cares about Lily.We decided to take her off the diet. She said her main goal is to give Lily the best quality of life and if foods are what she enjoys and the diet …
When guests showed up they saw signs displaying “Foundure for a Cure”, we added the “” in order to make it look like it was a poetic spin on the words on Fondue and Cure, but the truth is it was a big ol mistake that made us all laugh. And now the joke will …
Ever wonder what your 9 year old daughter is thinking? Has she ever gone away for a weekend leaving you longing to hear her voice again? Have you ever wondered what really made her smile? Ever think back about when she was an infant, the way she made eye contact with you while you fed …
Ever leave your room to take folded clothes to your daughters room, walk into that room and see that your son “fed” the guinea pig timothy hay all.over.the.entire.room, say “Oliver Isaac Steven!” and then go to get the vacuum, on the way to the vacuum see another load of laundry needs to be ran, put …
Calm Amongst the Chaos 