Thursday, April 14, 2016


Hello friends!

So sorry for the lapse in updating - Frazer had written one but we decided not to send it because things are a bit different for now.

Milla is doing much, much better!  She has had a huge surge of energy, alertness and an overall decrease in tremors and seizures!  We increased her depakote just a little bit a couple weeks ago and it is making a big difference - one that we didn't expect at all.  We are so thankful for this time with Milla!  

Elle is about the same - falling a lot and seizing a good bit.  Her rages seem to be on the rise again as well.  It's been pretty hard to watch.  We are having her fitted for some spring-loaded ankle braces that will hopefully help her bring her toes back up while she is walking/running and ideally, this will help her not trip so much.  We did increase one of her meds - an effort to better her sleep.  We will give it a few more days to see if it works.

Monday, we went up to Columbus, OH for an appointment at the Center for Batten Disease and met with a myriad of specialists.  No big changes - mostly, confirmation of what we are already doing. Thank you to those that helped us get up there and back home so quickly and kept Ann Carlyle while we were gone!!

Last week was Ann Carlyle's 7th birthday!!!  She and her friends went to the planetarium for a show and then we moved the party to our house for doughnuts.  She is so interested in stars and space and all right now.  Space and legos are her obsessions.  :)

Next Wednesday is Elle's 4th birthday!!  I can't believe our baby is turning 4.  Until last month, she still looked so much like a 3yr old to me but then she had a growth spurt and her legs are all of a sudden longer and she has transformed into (almost) a 4 year old!

So, I had a root canal this morning (not cool) and I'm still somewhat woozy and the pain is starting to kick in as the numbing wears off so I'm going to wrap this up but I wanted to keep everyone in the loop! (This is the choppiest update - I'm not very with-it!)

Much, much love to all!!

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