Wednesday, February 2, 2011

Holy skipping months!!!

so much for the shaming me into writing, huh?

Ugh...I am such a procrastinator...all the excuses in the world add up to just that...excuses.  Time to roll up my sleeves and just dig in.

I have some great pictures of the last couple of batches of cookies we made and this week a package should be getting sent out with a few dozen more.  Stay Safe Amber!!!

I am also working on making onesies and capes for Finneroo and her BFF Juniebird (I love that baby)

Roobird and Juniebird were roommates over a year ago, at Children's Hospital...7940 represent!!!  :)  (that was my attempt at being hip...give me a break...I have only had one cup of coffee so far today and it was a long, rough night) 


Finn and June will be going to the state capital for Epilepsy Awareness day and they are bringing our families along.  We get to go talk to our senator and representative about the effects that epilepsy has had on our lives.  I made a little handout to give to them with some pictures of my chooch and some of the things we have gone through.

So...onesies with purple butterflies (the epilepsy symbol) with purple ribbons (our color) and super hero purple capes....those are what is on the agenda this weekend.

Speaking of the Bird...aunt Amber got us an amazing thing called an emfit movement monitor. We are so lucky to have it.  It is very expensive and not covered by insurance (why, I will never know) It detects all the seizure movements that Finn has when she sleeps.  I was shocked at how many we were missing and how much she seizes in her sleep.  It also alerts when she stops breathing (it detects an absence of movement as well) and that was lucky as I was able to go in and check when the alarm sounded and get her out of the crib and started breathing again.  SUDEP is a big worry for me so this helps me sleep a little better at night (ummmmmmmm when it's my turn anyway!!!)

Rooski is now topped out on Keppra and we are gradually adding Topomax to her cocktail.  The topomax has proven to be a little difficult to adjust to and we are seeing a lot of behaviors we didn't before.  We are working on her sensory issues and she just started drinking carnation instant breakfast in the morning so we can keep her weight up (topomax makes some kiddos not eat...Finn is one...she takes bites but 2 cheeseballs does not a meal make)

I promise to be better about this blogging and especially about posting recipes.

I made homemade cheesecake last week...HEAVEN...and with blueberries on top it was even better....yummmmmmmmmmmmmmmmmm