Monday, April 25, 2016

Happy Birthday to Elle!!

As crazy and fast and busy as life always seems to be, there's always room for it to get even crazier and faster and busier, right?!

I'll jump right in...

We celebrated Elle's 4th birthday last week!!!  We are so thankful for that spunky firecracker/tornado!  :)  We had a big (huge) princess bouncy house party for her Saturday and the weather was perfect and she LOVED it.

The crazier part of life comes in with how the girls are doing.  Unfortunately, it's not good news.

Elle's balance and falling and seizures just keeps ramping up.  It's super hard for all.  I'm not sure if we are going to try to combat it with meds yet at this point or not.

Milla's bounce-back has pretty much leveled out and she is regressing a bit.  I'm pretty convinced though, that part of it, at least, is due to her getting sick.  She started getting a chest/head cold Friday afternoon and it's still going strong.  Her lungs sound terrible but she is coughing productively, which means she is moving all that junk up (and totally out hopefully).  She's been tired and clingy and weaker.  But she's hanging in there.  She is truly Mighty Milla!!

Also, I have the same cold and I am feeling pretty yucky myself.  Please pray that this infection gets outta this house asap!  

This is the second time in a row I have written under the influence of drugs...eek.  Hopefully, this time I didn't misspell something like 'route canal' instead of 'root canal'.  (Eye roll)  

So I'm keeping it super short again - just wanted to keep everyone in the loop!  Please pray for good health!

Much, much love!!
PS - I'll try to post some pictures soon

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!!