Saturday, March 3, 2012


How was our day yesterday? Well, overall...I'd have to say good. Avi really has some of the best doctors Kaiser has to offer. I feel so blessed in that regard. Anyways, with Aviana's appointments,  I always do a Kaiser marathon. I schedule all at once and all in a row. 

First up ~ Neurology. My mom had told us about an ABC Special she saw about Ambien. At that time, I just wasn't sure I wanted to go down that road. We continued to research and I was still waffling back and forth all the way up until the appointment yesterday morning. Not because of the drug factor, but for me, it was about the DNR we have in place. Dave wanted to try it, so by the time we went in, I was in that space. I didn't want the doctor to feel any hesitation on my part. We decided to first try Ritalin and then in a few weeks, if that doesn't work, we will move on to Ambien. We'll hope for the best, but if all we are left with is nothing...well, we're used to that. 

Next up ~ Neurosurgery ~ We will be doing a small outpatient surgery for the plate that is quickly making its way through Aviana's head. It's a much less invasive surgery than it could have been, so we were thankful. Her doctor felt comfortable, for now, with how thick the sunken piece of bone turned out to be on the MRI. Her surgery is scheduled for March 22.

Last ~ GI/Nutritionist ~ We will be getting her liver biopsied at the same time her head is done. Aviana may be severely brain injured, but she sure is flexing her Miki muscles. She hasn't fooled anyone, well with the exception of her ~ Avi can do no wrong Nana! Her doctor's got her number too, and  referred us to a Pediatric Behavioral Feeding Psychologist (yep!) for her stubbornness to open her mouth while eating. He asked what I thought it was, and I said behavioral for sure.  When she wants to, she'll wolf down a whole meal in under 10 minutes. He agreed completely. He said feeding is the only real time she can exercise control and boy is she. YAY for someone coming to the house to help us with that ; )

Patiently waiting...

And waiting.

I laid her outfit out and after Dave put her in it...he thought she looked like a Hood Mouse. I guess he was chanting it, but I didn't hear him. He said it again while we were waiting, and I couldn't stop laughing.

Who knew our girl could Krump too?

This is her, Word to Your Mother pose.

Oh wear your shirt off your shoulder too!

Sweet girl.

Tired of waiting.

That's quite a dent, isn't it?

Her doctor was in awe of how many screws she has holding her skull together. Each dot is a screw : (

The left was her head at the end of 2010, and the right is her head now. Hence, the cone shape we started to notice. The sharp looking edge at the top of the dent is the piece of hardware that needs to be handled on the 22nd.

Revived for a little while!


  1. I am soooo glad that things went well! I love the pictures! The head shots are amazing. It is so great that you have doctors that you can trust. I also love that she has to go to a feeding behavior psychologist. :) I hope that it helps you through that stubborn part of the day. I am saying this next part in a whisper *i think her stubbornness is kinda cute though.* :) I did not just say that.

  2. So happy to hear that things went well.

  3. Can't wait to hear about the Ritalin! And poor Avi! That is a big difference. I'm glad she's able to get it fixed, though, with just a minor surgery.

    BTW, I love hood mice. ;-)

  4. I'm going to be so curious to hear how those meds affect her. That's exciting!

    I'm so glad her upcoming surgery is as minimal as it will be. I had visions of so much worse.

    Regarding her eating....I think she's holding out for pie.


  5. So glad it went well. Poor baby girl though. Sweet, innocent children shouldn't have to go through all this. I remember once a year bringing Brian to an all day doctor appt. He would see about 8 doctors through out the day and have every test ran. It was so tiring on us all, but many things were caught while we were there.

  6. Good luck on the 22nd. Cute shirts on both of you:)

  7. Hug that sweet little girl for me. You're always in my thoughts and prayers, but especially now with the upcoming surgery. *hugs*