Friday, December 6, 2013

KIDDO UPDATE 12.6

But first, feast your eyes on THIS:
Ohhoohoo! Isn't that chilly?
It got down to -20 below around 3:30 a.m. so I set my alarm and forced myself wake up to turn on the water in the kitchen sink for an hour (so the pipes don't freeze). I opened the cupboards beneath the sink and the door to the laundry room, and then I cranked the heat up before burrowing under my covers and going back to sleep. 
Tonight I shall be locking us in the house with comfort food and Christmas movies.
Brr cha cha!
 
Also, I would like to make this announcement:
Both of my children slept through the night last night.
Can I get an AMEN? This has been the only time all week they have done so.
 
Thought I'd just give you a quick update on the kids and how they are doing.
 
Caderyn:
Caderyn has been pretty good lately with his tics. I think I've mentioned this before, but with Tourette's Syndrome (TS), it is kind of like a roller coaster. One week you never notice a thing and then it will build a little over a week or two and then it is full on all tics all the time and then it is back to normal again. We have just been trying to really downplay everything. We don't talk about the tics, except to remind him to relax when he gets upset about them. If he is having a tic week, I've noticed Caderyn transition from trying to restrain them while out and about and then letting them loose when we get home. Although it is hard to watch him struggle through them, it makes me feel good to know he is comfortable to just be himself in our house. Our neurologist mentioned this might happen, and I'm glad she did and that I recognize it. He deserves to just relax, have his tic-time, and feel comfortable and safe.
His tics were bad about two weeks ago , but now for the last week and a half he's been great.
We are still going to get him in to see a counselor, but are waiting until after the holidays.
 
He is excited for Christmas. No. That's not even close to what he feels. Caderyn is practically levitating these days in preparation for Christmas. You can see the stars and wonder in his eyes.
He still loves coloring and all things superhero. He is obsessed with decorating for Christmas and checks to make sure each decoration is in its place. He is so funny and goofy it just cracks me up. He is the worst procrastinator in the entire universe. It takes him five minutes to put on underwear in the morning, then another five to put on socks.
 
Gabriel:
Oh my little Gibby-monster.
We got the results back from the microarray genetic test yesterday. Everything looks good except for the 19th chromosome. The doctor said that is not cause for alarm and they are going to look again in more detail. There was just a tiny blip, like a duplication on that chromosome, which is generally common, but with Gabriel they wanted to look at it a little closer. So, as for answers, we really don't have any on that part yet, except that this news was pretty good for us.
He is still doing physical and occupational therapies. He will start speech therapy in January.
He can say "Hi" and has been trying to repeat words a little more, but can really only say "Hi."
He has been getting stronger and uses his little push walker more and will now bring himself up unassisted to standing for a few seconds. He has made a game of this.
Exhibit A- the game.
video
And here he is working hard at standing
video
He has been screaming a lot more the last couple weeks, but we are working with him to try and voice feelings as best he can because we're pretty sure he's mad because he can't communicate with us. This means I'm watching him more closely to see why he's screaming and then saying, "Do you need help?" or "Are you frustrated because brother took that book?" really slowly and while getting down to his level so he can hear me and look at my face.
It is frustrating sometimes...especially when we are recognizing that nothing is really wrong, he's just being a stinker.
Gabriel LOVES to eat and will generally eat more than Caderyn. His poops are awful (TMI!), but he is eating as much as a full grown adult. He is a little string bean. He has surfer dude hair that curls and the thought of cutting it almost sends me into tears. He loves playing with his brother's toys, and tries to join in on playing with Caderyn.
He loves pointing at lights or decorations and going, "Ohhhh!"
He likes Christmas music and follows his Daddy around like a shadow the second he sets foot in the door.

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