Goodness gracious I am a horrible updater! Here is the low down on miss LilyAnna Blu. Since surgery in April she was hospitalized 2 times and was in the ER 3 times. She has dealt with constipation, two UTI’s, a virus and then the virus settled in her hips and caused inflammation that caused great …
Tuesday April 7th: 4:15 am the alarm went off. I was already awake. Got dressed and packed the room up, lastly Andrew picked up a sleeping Lily and put her in her wheelchair. I was told not to give her anything to eat or drink, I asked about 80 times if I can give her …
OK can I just say being a mom is hard? Can I get an AMEN? We have to lift each other up, because I know so many of us are doing enough of knocking ourselves down. Cheers to all you mamas! You are AMAZING!I just wanted to say we did have a weekend of family …
Johnny Rockets, a luau birthday party, church. All places we attended a few weekends ago. All places Lily had seizures. Big nasty seizures.It was in the mid 70’s that weekend, it was lightly overcast and Arizona was showing us spring in true perfection. We wanted to be outside, we wanted to enjoy the time as …
For 7 years Lily has been on Sabril. She was on it before it was called Sabril. We used to call it Vigabitrine. We used to have to get it from a Canadian pharmacy, it wasn’t FDA approved for many years.Now that it is legal here it is cheaper for us to get (ie insurance …
We saw a different neuro last week. I met Dr. N when I went into TGen and had a meeting in a conference room with a table longer than my house. I met 4 researchers who were interested in CDKL5. I don’t know how we are moving forward, but I was thrilled to speak with these guys and just …
There is never enough hours in a day nor money in the account, right? It sure seems this way. But I know we are blessed. So blessed. I have so much I want to share and write about, but my time is short. We are almost done moving. A few things left in the old place we …
I wanted to share our weekend we had last weekend in Greer, but have been so busy it almost seems to late to bother. But I am going to anyway. And add some fun photos to boot.Our family went to visit my parents in Greer last weekend. It was the Kick Ash Bash weekend they …
Andi Jane was in Greer with Grandma and Grandpa for almost 2 weeks and I didn’t like it. We missed her so much and totally realized how helpful she is with the other kids. Sunday morning I was very hesitant in sending Lily into her Sunday School class because Andi Jane wasn’t there with her …
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 …
Calm Amongst the Chaos 