Thursday, September 24, 2015


Interesting stuff alert! We heard from TGen that this scientist is interested in doing a mouse model on Katie's mutation at some point - hopefully we are talking sooner than later.  In my generic terms: he will get some mice, somehow make them have her same exact mutation - and see what they do.  I am sure there is much more to it, but this is my unscientific BA of Psych explanation.

Will these mice walk like a drunken sailor? Maybe they will drool a little bit and need tiny bibs. Will they sleep with their mouths open and have GI issues?

 I hope they will show some signs of Katie's issues.  I don't know how long it takes to get this started, he might need a grant - but I love that Katie will have some mice who can relate! 

Friday, September 18, 2015


Paul and I recently had a great vacation in Maui. On the flight all I could think of was how hard this long flight would be with Katie.  What I would give to get her to faraway places...  that would be fun.  However, I must say it was really nice to read a book on a flight for once!

Katie on a flight to Denver is not too bad, we only do it once a year though. Much longer than an hour and a half flight might be tough. We could probably go by plane to see some mountain views in San Francisco, or even make it to Portland thanks to this data era of ipads etc... but I really would love to get her to Hawaii or NYC, or Florida.  Probably not happening anytime soon.

 Katie gets a case of CMS (Constant Mental Stimulation) on airplanes, in doctors offices, basically any waiting room.  Ok, I just made up that acronym, but I think you get my idea, yes?  On the plane we go from the iPad to a sticker book to ripping up the flight brochures to looking at the dogs in the dog beds in SkyMall magazine... and over again.  It's exhausting!  I wish I was 30 again I'd have more energy - actually she is pretty good because I keep her busy, but these flights drain me.

If you see an active kid on a plane please be nice, she may be mine - if the mom is covered in stickers then she is definitely mine.     

Tuesday, September 15, 2015

New wheels

Katie got a wheelchair to be used mainly for distances at school, on field trips etc... We are still working on walking and that is the main goal. She would get tired at school walking to the field to have P.E. so this wheelchair will come in handy. Below is a video of Katie's first time in it.  Amazingly she seemed to know what to do.  She got mad when I took her out of it!