Lily has not been sleeping, then last night she had a huge grand mal, then became inconsolable then she had another big one. Sharon (her awesome care giver) fed her a light meal, gave her dinner meds and a quick bath and we put her to bed and she did sleep all night. I am …
When you think yeah things are gonna slow down they don’t. Or they do so much that you’re unmotivated to do anything. I’ve been dealing with so much lately and I am exhausted. Physically, emotionally drained. When I am struggling in life I go straight to writing and I have been, but it just hasn’t …
So here I sit on Lily’s hospital bed while she sits in her wheelchair. We like to switch it up, you know keeping it exciting. It is 8:30am and we are on hour 48. I’ve enjoyed about 4 rounds of Family Feud, 8 rounds of Solitaire, 4 rounds of Scrabble, kept up with status updates …
Here is our summer vacation going on right now.
I always do this, wait too long to post then post a monstrous post that only my dear mother will read all the way through and do it again and again. Sorry. I used to post while Ollie napped and the girls were in school, but you know summer break…. Kinda like working 24/7. You …
Lily’s having a big seizure each day. The new med is making her so tired and I’m thinking it may not be worth it. I really hate trying to figure meds out. They make her tired and she is still having seizures. I would love to take her off everything, hospitalize her, and start from …
My goodness I haven’t posted much lately. I need to, I should have. Should I tell you about my lack of time, or do you really care? Excuses, like butt holes, we all have them and they all stink.We went to neuro last week and besides being called his platinum VIP patients, it was a …
So Monday was our last appointment. Sigh. It was a long one. Thank God my mom went to hang out with us. It was a long one. I first spent 2 hours getting pee from Lily Sunday night. 2 hours! I was an hour late to a family dinner at my sisters waiting for that …
So Lily is on modified year round school schedule. That means for every nine weeks they have 2 weeks off. Only two weeks is more like two and a half weeks plus two half days. Which in more clearer terms, really hard for someone who tries to work a few days a week. Since I …
Changes are in the air. Is it because it has been awhile in the waiting? No that can’t be it. Is it fall? Who knows.I still haven’t gotten a plan for Lily’s wean and add of the Vigibitrine so I put a call in the AM and it was much cheerier than my last, lets …
Calm Amongst the Chaos 