Maple Syrup

Lily has been up and down lately. Some great days, some nasty seizures, and some seizureless days. It's like we wake up in the morning and never know what her medical status will be. We went to church with our neighbors and Lily went into a huge seizure. This one scared me; I thought we were going to have to do diastat, but thankfully, she recovered quickly. Her face was so red, and her little heart was pounding. Poor girl. Then today I haven't seen any, so you just never know what to expect. But I am appreciative for those seizure free days!!

Also she has been on a prophylactic antibiotic to prevent UTIs that was really making her fussy. The urologist told us to stop for a week, and she immediately seemed to feel better. By next week, he'll most likely put her on a different antibiotic.

Also, we just found out that Lily's Clobazam (a seizure medication) that we get from Canada can no longer be shipped to the U.S. due to the fact that a U.S. company is now making the drug. Well, the American version has caused behavioral problems in a lot of kids and not to mention the fact that it would cost us $1000 a month (versus the $100 we pay from Canada). It is legal for us to go and get three months worth, so it looks like we'll be driving 3 1/2 hours to Vancouver B.C. every 3 months for Lily's medication. Sheesh!!! Thank goodness we live close to Canada and are able to get the medication at a decent price. Go Maple Leaves!!