Lily is eating better. I found out she loves avocado. I found some tortilla with very low carbs and who doesn’t love a cheese quesadilla? She likes a cauliflower mixture with cream and chesses that I think tastes like mashed potatoes. So I am feeling better about her getting more food in. Not happy that …
Seizures are the devil. I hate them. Lily is on 4 anti seizure meds. 4. Have you ever read the labels on anti seizure meds? Ever listen to a commercial talking about a medication for foot fungus and hear the side effects and figure you’d rather just have foot fungus? Yeah it’s like that. We’re …
“Too broad” my friend Codi says to me on New Years Eve as I tell her my resolution. But it was way too late into the night to really have any sort of meaningful conversation with me, I am sure at the time I thought it was meaningful, but by the next day it was …
I turned 33 last week on the 19th. And while it wasn’t my favorite day this year, it was ok. I’ll have others. My day started nice enough with Alex the Elf sitting on my new Kerug coffee maker. I always thought they were cool but never thought we’d own one. I had been fine …
Here I sit on the day after Christmas. The day that all of a sudden I realize I have no elf mischief to figure out. No wrapping to put off. No shopping, no baking, no cooking. Andi Jane is at a friends, Lily is resting after her caregiver fed and bathed her for me and …
I wrote THIS (click this) many moons ago. I wrote it as a new mom of a very special baby girl. A mom who started coming to terms with the whole meaning of Christmas. Ok I grew up knowing the meaning of Christmas, but becoming a mom meant knowing the true meaning of Christmas and …
Every year I say I won’t do this to myself. I will be more organized. I will save and I will budget. I’m a freaking FPU graduate thank you. (GoodSearch it if you don’t know what that is) But I didn’t. Here I am 2 weeks before Christmas still scrambling. But I can pat myself …
This is the time we remember what we are most thankful for. And I could give you a list as long as the world is wide. I am thankful for so much. From the shoes that cover my feet to the roof that doesn’t leak that is over my head. Thankful for one clogged toilet …
I am not sure if I made an offical announcement but now is a better of time than any…..I am now a board member for the IFCR (International Foundation for CDKL5 research)!I’m thrilled to be a part of these special woman doing something to make a change for the future of CDKL5. I won’t push …
Vegas came upon us fast and hard. It was one of those are we going or aren’t we going. Where are we staying, who is going? My beautiful niece, Ariel, turned 21 on November 10th and since her 18th birthday she has been saying “we are going to Vegas for my 21st right?!” Well it …
Calm Amongst the Chaos 