We still have concerns about the Non-convulsive Status Epilepsy (NCSE). Becca has still just not been herself. I know if I call her Neurologist I will just get the standard “bring her into the ER” song and dance. Her behavior is just to close to also being shunt failure symptoms. Since we (her parents) know she has the MRI this coming week, we are just trying to keep her in a holding pattern. If she got really bad, we’d take her to the ER. Until then, it will be wait and see. Then, based on what the MRI shows, I’ll have a chat with her Neurologist.
I still worry something has changed with the Neurofibromatosis. Could that optic glimoma be back? Or another tumor? She has been so off balance for so long. We know that could be related to the seizures, but she was doing even more unusual stuff than typical off balance seizure stuff that prompted my initial conversations with the neuro-oncologist.

So yeah, right now I’m worried it could be some kind of NCSE, shunt failure, or tumor. Isn’t life grand? Instinct tells David and I though that something is wrong. We just don’t know what.

Becca is loving life now that she is off the Ketogenic diet. As I’m typing this she is scavenging for cheerios left over from breakfast. Yesterday I had one of those icee pops – you know the kind that are nothing more than kool-aid in a plastic pouch you squeeze up. Well, I started to share my snack with Becca. However – she commandeered my snack and ate almost the whole thing! This is actually somewhat of a milestone for her, because she used to HATE cold things. This is the girl whom for the longest time I had to warm up her bottle just right, or she would gag and spit it out. I think she was 18 months before she took a cold bottle.

School is going well for her. Kind of odd that traditional kids start back this week, and for Rebecca and the rest of her year round peers they are already halfway through with their first quarter. She is coming along using her communication device and her ipad. She is really starting to understand how to use them to communicate. Her overall play skills are getting better. Right now she is sitting beside me on the couch, with her own toy laptop on her lap. My laptop is on my lap. I watched her do this the other day, climb up onto the couch while I was on my laptop. She then pulled her “laptop” into her lap. It was too cute. She just sat there and looked at me and grinned.
We have never seen her mimic before.

well – I think we are gonna watch a movie. So enough for the update for now.

Thanks for reading and have a blessed day!

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One thought on “

  1. I hope you can figure out what is going on with her. I hate to hear that. Emily is the same way with cold things, she gags and acts like it’s acid. and how cute is her setting with her laptop! It’s just amazing the things they pick up!! Praying for your all!!

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