An Update of Sorts

I know I haven't updated regarding NIH yet.  It was an emotional week, with lots of things I'm still processing.  I want to recap the week, if for no other reason, so that I can look back at it someday.

For now though, I just wanted to check in since it's been a while since I've blogged. 

Bella is doing ok.  She gets private therapy 3 days a week, (45min away one way), plus add in dr appointments and the chaos of 2 brothers..and well, life is busy!

We saw her epileptologist at the end of Feb, and she had an outpatient EEG the same day.  Bella's EEG is pretty terrible, and she's been admitted urgently several times after a routine EEG.  (It's not fun to be admitted 2 hours away when you are totally unprepared)!  Her EEG typically draws a crowd, and panics the EEG techs, as it shows constant seizure activity (nonconvulsive status epilepticus is the technical term).  We don't see many of the seizures she is having, and I've learned to trust my gut, and go more on how she's acting (less interaction usually means she's having more subclinical seizures).  I decided to pack a bag this time (hoping that by being prepared, we wouldn't be admitted)!  I'm happy to say it worked and we were not admitted! 

Not much has changed in her EEG.  It still shows constant seizure activity, with seizures occurring about every 30 seconds.  If I think about that fact to much, it makes me want to cry.  That has to feel terrible.  We are slowly increasing some of the meds she is on, in the hopes that it might help the seizures we do see.

Funny story:  We live in an area that is home to a large Amish community.  (No, we are not Amish)!  This was the my conversation with the EEG tech:  (There was a road closure due to a water main break, so we were a few minutes late).

Tech:  "Did you drive yourself here or did a van bring you?  Did you have to wait on your driver?"

Me:  "Um, no, I drove myself". (looking confused). 

Tech:  "Oh , WOW!!!   You drive?!!! I thought Amish didn't drive!!" 

Me:  "Um, I'm not Amish."

Good grief.  Does our picture on the blog look like we are Amish?  Sigh.

Bella's also been having some GI issues.  I won't go into all the details right now, but the current consensus is that her viral illness in November, triggered some of the symptoms we are seeing.  She is currently on an antibiotic to see if that will help.  If not, we may be looking at changing her G-tube to a GJ tube (instead of the tube being in the stomach, her feedings would bypass the stomach, and go straight into her small intestine).  I'm hoping we can avoid the GJ, but obviously will do what is best for her. 

There's never a dull moment with Miss Bella!  :)

Here are a few recent pics.  On the days when I wonder "why" or feel down, this smile gets me through.  I love this little girl with all my heart, and I am so beyond blessed to be her mama.

 This pic was taken at 2am.  I do love her smile, but at 2 am, I'd rather be sleeping.

Go to sleep, Missy B!!! 

 

At PT with her wonderful therapist, Melissa.  She's supporting most of her own weight, which is HUGE!! 

 



Love.