Sooooo Sleepy

I reeeeeally want to update the blog, but I am SO sleepy!! Let's see if I can at least get out a few points of interest. Olivia managed to weather the higher temps that plagued her last week without having any emergencies or even big seizures at all. This is very, very good news. I am still trying to get a handle on her allergies again, but at least her high temps have come down. 99+ is the highest I have gotten for several days. This is high for her, but it is still better than almost 102.

Ok....that is all I can manage. I require more coffee to keep from constantly yawning.

-H

We began the home health nursing approval process today, which basically consisted of an initial meeting with the nurse case manager from the home health agency. She was very nice, and I really like the company so far. They are also our medical equipment company and have proven themselves to be incredibly efficient. I had to basically arm the nurse with loads of info about Dravet, our daily life, health history, and all that sort of thing. One of the things that was just running through my mind a moment ago (this is many hours later after the appt and, of course, my brain is still churning--ha), was the line of questions she asked me regarding Olivia's seizure frequency. It has most certainly increased and not surprisingly for the condition as it is progressive. But, the thing that struck me was when she asked if there was ever a day she didn't have a seizure. And, without hesitation, I said, "Oh no. She's never had a day without a seizure. Not since about 9:00p Feb 14, 2010."

...............................WOW............................

As the woman reacted and then made her notes. I just sat there quietly realizing the enormity of what I had just said. My precious Olivia has seized every day--EVERY day--for more than the past year. That's a lot. My guess is her average right now is around 100 a day, but I really don't know. They are way too hard to count. I am awaiting her recent EEG results, and that may give me more of a clue, but then again it's only a snapshot of time. So, all I can say for sure is that I know she is having a whole lot more than she used to, and like I told the nurse--Olivia never gets a day off.

I sure do adore my sweet baby girl. I am SO very proud of her. She is the strongest person I know.

COMING SOON: Updated report on development! Olivia has been doing some fun and exciting things in this area that I can't wait to share with you all!

Here's a little update on things: Olivia has been doing pretty well overall. We still ride the daily Dravet roller coaster of course, but we have only had one EMSA call lately and no hospital trips. So, we call that decent. She seems to have finally kicked the last of the winter illnesses only to have been relentlessly attacked by allergies for weeks now. Even allergies lower her seizure threshold, cause her to run a low grade fever and create such nasal congestion that it would impede her emergency medication. Allergies for pete's sake. I THINK I finally have it under control just as of today actually. Today was the first day I realized I hadn't used a tissue on her repeatedly all day long. Her doctor switched her from Zyrtec (once a day) to Allegra (twice a day) and she still is on her nasal spray, Atrovent (twice a day). I offer the details for any other Dravet mommas who might be dealing with the same issues, so they can know what has worked for us.

Olivia has been having increased daily seizures, which for her means pretty much a grab bag of all her seizure types excluding the generalized tonic/clonics (grand mal). So, she has been keeping me extremely busy for....well, gee, I don't really know how long now. I guess this last intense period has been building all year so far really. Of course, truthfully, Olivia has kept me way too busy ever since she was born!

SPEAKING OF!!! Duty calls......Must cut this update short. I will return with more info as soon as I can. Until then, take care!