Thursday, December 22, 2011

Let it Snow!

I have a precious few moments with my desktop and coffee mug this snowy morning.  I can’t believe it is nearly January and I’ve left no words of our December days.  There has been a sick bug in the house that sort of threw everyone for a 24-hour loop, or two.  Lysol and laundry took priority I guess.

We also have a new gadget that we have been preoccupied with.  Finally, Ava’s DynaVox voice arrived last week.  We are still waiting on the tactile divider that has to be custom made to enjoy the full benefits of the talk box, it is HUGE, the screen size is necessary for her vision issues.  She has a VMax+ so it is about half her weight in a bag; normally these things are mounted on a wheelchair.  Modifications for ambulatory, neurologically challenged, vision impaired kiddos are never dull.  The local grocery store graciously donated a little cart for her to push from classroom to classroom; it is overflowing with adaptive devices.  That is a good thing.

We’ve started receiving bottles full of zonisamide, so far this addition is helping greatly with motor sills but we are not near full dose nor are we past screaming/myoclonus issues at this time.  We will be back with epileptologist in February; I hope to get any med dose changes done while she is at home over winter break if necessary.  She is losing and cutting teeth like mad.  The process is no prettier than when she was a baby.
Ava is doing amazing with her I-cane, I actually feel the guilt when I leave it in the car while visiting places she has lovely opportunities to enhance her skills at.  I can only keep track of so many modifying devices and a little sister, safely at once.  My remedy for this is to build my own stick (they use the one pictured at school) so I can save my back and conscience in one swoop.  Also hopefully have an open hand to keep track of Liz Mae with.
Don't worry, I usually change her shirt after snack ;)
Elf on the Shelf has been keeping me on my toes lately, too.  Aliza is pretty quiet about her, she will not give the creepy thing an official name but she always knows her precise location when I inquire.  I suspect she figures Santa will not know what is up if the elf doesn’t have a name.  It also confirms her knack for never forgetting one single detail.  I often hear things like, “I’m still waiting on my cutie” from her.  Funny thing is it could be the one I forgot to give her for bedtime snack the night before.
Miss Aliza is so close to three, she has been playing the part.  I can’t shake her off my leg when I need to get something done and she doesn’t want anything to do with me when it is play time.  She’s also pretty stoked about Santa and has been singing or hollering some kind of season greeting to everyone.  Everyone. 
We are a great match, Aliza and I have big funny bones.

Aliza loves taking pictures, some are very interesting, this not being one.
A very Merry Christmas, Happy Hanuka, Merry Solstice, Happy Kwanzaa, jolly whatever you believe this season! Be safe and enjoy those awkward family moments.

1 comment:

Anonymous said...

Same good wishes backatcha, Amanda! Sorry y'all have been ill and glad that you seem to be well enough to enjoy this weekend.

Your report on the adaptive devices is so encouraging - when I have had the chance to work with a child who walks and has VI and a voice device - well it is rare. I am encouraged reading from a parent who invests (not talking just $$) in making all this happen for a child.

Love the photos, too!