Saturday, January 31, 2015

Where have You Been??

That blog title is a song by Rhianna. And Rich and Tanner would roll their eyes and look at each other when I say, "we have a dance to that song in my dance class!" I say that often when we listen to Tanner's pop radio stations. And he says, without fail, "please don't start doing your dance, mom." I'm officially embarrassing.

Anyway, where have we been? Why haven't I been blogging? I don't know why, but I can say it's so amazing that so many people have reached out to me to ask! If you're reading this, thank you so much for caring about us.


1. We have nurse care!!

We can actually sleep through the night - sort of.

Well, the truth is, it's not a perfect solution and one of us is still sleeping with one eye open every night.

One problem is that there are about 4-5 different nurses who rotate shifts. They don't know Josie's ways. Her seizures are not classic convulsion seizures that are obvious to anyone. And she has so many other movements that could be confused with a seizure. The nurses don't know her yet, and we don't feel comfortable assuming they will know what is and what is not a seizure.

One nurse was holding Josie while her seizure started and he didn't know. I don't blame him at all. Who would know that the way she started to breath a little heavier and widen her eyes meant her seizure was starting. So we ask them to get us no matter what.

"If she twitches funny and you're not sure, get me."

The fact that it's not me or Rich staring at her all night is an incredible blessing. I sure as hell don't mind if I'm woken up a million times.

Another problem with the night nurses - and this is kind of funny, but not funny - they fall asleep!! I told Rich we need a monitor on Josie and a monitor on the nurse so we know if he or she is actually watching her. It's happened a number of times. Again, I don't blame them. It's nearly impossible to sit in a dark bedroom in a comfy rocking chair through the entire night and not nod off. Sometimes I just say their name and they wake up. Other times I have to give a full on nudge to their shoulder. I always laugh a little because waking people up is just funny, but in this case it's really not funny. She needs to be watched.

The upside is that we do have a nurse or two who really never fall asleep and hopefully they'll all get to know her better. But, one of us has the video monitor right next to our face all night and we both take casual strolls into her room throughout the night. It's still better than it was.

2. Josie has had two long (10 days and 12 days) seizure-free periods in the past 2 months.

Well, while I try to focus on the positive, those seizure-free reprieves came after her worst month for frequency. In December she started having seizures almost every day. Most of them were not as sever as others in the past, but some were still severe. I couldn't figure out if the combination of her ketogenic diet and meds was causing them to lessen in severity, but increase in frequency, or if the cocktail was just causing new milder seizures in between. Or would she be having more frequent severe seizures if not for this particular cocktail. It's just impossible to know. We do know that on the two occasion that we raised her Onfi, she had a nice long seizure-free run.

3. We went to Florida for more than 2 weeks over the Christmas break! Josie was a champ. She was great to travel with and a big part of the seizure-free run was while we were away. Unfortunately, they started again in the last few days there. Our Montauk babysitter, Ariel stayed with us for the entire time and that was beyond helpful. And Josie got to do her favorite activity - swim!

4. Josie will be having her adenoids removed on Feb. 26th and at the same time her GI will do a scope of her throat. I'm not excited for surgery of course, so I won't spend too much energy on it right now.

Here are a bunch of pictures from Xmas morning (Josie was fast asleep still) through our Florida trip.