Sabril

Just a quick note to say that we have started Jack on the Sabril. We haven't seen the spasms come back yet. I am skeptical as this is a fairly low dose and resolving the brain patterns is the real goal. Will this dose go deep enough? A fair trial is about a month. Then an EEG will show improvement or not. Also, we finished the ACTH around the same time we started Sabril, so how long does it take for the effect of the ACTH to wear off? In the meantime, Jack is happy and active. Right now he is babbling and kicking in his chair.
Still having to check the blood pressure and medicate for that. What a nightmare the BP has been! On Friday, after being told we'd need to come in every day for the next week (Ha!), I decided to try an experiment. Various nurses and doctors told me that the $30 BP monitors at CVS wouldn't be compatible with a child cuff. On Friday I bought one, switched the manual sphygnomometer out with the automatic fitting, and voila! It worked like a freakin' dream. I was so mad about all I had gone through for blood pressure. Fire station every other night, false high readings, hours in the ER, neighbors coming over, hours on the phone fighting for home health...WHY DON'T THEY KNOW ABOUT THIS?! The nurse said that automatics are calibrated to go to a certain pressure. Which is right. But it's reading the air pressure, like blowing up two different size balloons. The child cuff's bladder has a smaller volume, tricking the machine. That's how it works on the professional ones with interchangeable cuffs, so why wouldn't this work, as long as the connections are tight? Anyway, I'm no genius, they just haven't thought of it because they aren't the ones schlepping kids to the doctor daily. In fact, today, I'm going in to prove that it works, so they'll "let" me use it.
Then I'm going to meet Harmony for lunch, if she can. And shop at Lil' Traders for cute fall clothes for the kiddos. The weather has finally turned here, and it's wonderful. I made hot chocolate the last two nights and changed our sheets to flannel. I looove flannel sheets. The roses are blooming great in the cooler temps and the ash tree will turn soon. This is my favorite time of year. Especially because I love Halloween. I have my little witch and my skeleton to take around this year. Emma is big into pumpkins. She has them confused with "Thumbkin", you know, "Where is thumbkin, where is thumbkin? Here I am, here I am..." We sing that every night and she's getting pretty good at it!