trying to muster up the energy for a new post

nope, can't do it!  but I have to do something to get the snow off the top of the page!
;)

SNOW!

We got a huge blizzard here late Tuesday into Wednesday.  It was over 20 inches!  We all had a snow day on Wednesday and Jackson and I had a snow day again today.  Lee worked really hard shoveling for hours as you can see.

Zoe loved playing with Daddy on the huge piles of snow.  She kept asking to slide again and again until Lee could hardly lift her anymore!  Jackson and I stayed inside.

Jackson stuff

First here is a cute video of my kid...ain't he sweet? <3

Update on his ECO2 eyegaze device:  2 steps forward, one step back.  Insurance has approved the device.  However, they have approved only rent to own, not a purchase.  But so far, no one wants to rent us one to own...so we wait til we can find someone who can. Sigh.

And last, poor Jackson has been sick (finally caught whatever it was that the rest of us had going around) and home from school.  He is so phlemmy and hoarse, poor guy.  He's staying home again tomorrow and also going in to see the pediatrician.  Lee has orders to ask about a suction machine while they are there.

Zoe sings the alphabet

Love the "lmnop" part!

Go check this out.

"life with a severely disabled child" is one of several blogs I read regularly.  Unlike most of the other blogs I read, I don't actually "know" the author.  I just stumbled across it while researching something and thought it was interesting reading.  She recently wrote Dear New Parent, a letter to the parent of a newly disabled child, and I thought it was worth sharing.

PS.  Sorry for not blogging more regularly, but I'm tired!

The December Picture Post

Most of my actual Christmas pics were not that great so there are only a few of those.  

These pictures are not in any kind of order. Enjoy!

Jackson opening dinosaurs on Christmas.

More dino fun.

Santa Zoe rides Rody

Smiley Bears fan

Zoe rides Santa Rody

She is quite a character

Unfortunate new dysautonomia development:  Jackson turns beet red (and these red spots are incredibly hot!) every morning.  The rest of his body looks normal.  His hands are cold and clammy.  We put mittens on him.  Poor kid.

Snuggling up with my sweetie reading One Fish Two Fish.  You can see how gigantic he is in this pic.  I don't think I'll be able to do this for much longer.

Zoe is saying "cheese" very enthusiastically.  It's cracking Lee up!

Dizzy cuddled up with Zoe's doll...isn't that CUTE?  No, I didn't pose him that way.

Zoe stole one of Lee's undershirts and decided this was a monkey costume.  She insisted on wearing it to school.

Jackson and I made borax crystal ornaments together. 

We made a pink/purple, a blue, and a white.

They came out nice although the white's crystals were not as large because I ran out of boiling water and the borax did not dissolve as well.

Zoe was sick for a lot of the month so we spent a lot of time snuggled up together on the couch.

Sweet baby

Zoe with some of her Christmas loot.

Dad also got a lot of snuggle time.

Jackson in his stander getting lunch

New wheelchair cape.  I need to make some arm warmers for him and he will be set.

 

Zoe jumping on her new trampoline.   She doesn't really jump so much as bounce...yet.

Been too tired to blog...

But I guess I should update, huh?

Jackson has been healthy and doing well.  Enjoying school, bored on the weekends.  Gonna be really bored now that he's on winter break.  He has wonky autonomic stuff that always happens in the cold weather months but we are used to that and just deal with things as they come up.  We are finalizing his order for his communicator.  Hopefully insurance will not be a butt and approve it quickly, but it rarely works that way.  We need it before he goes in to have his hip surgery.

Yeah, looks like we are going forward with that.  Lee took him into the appointment last week with a list of questions I had prepared for him and did a great job getting all of the responses written down.  It looks like it will happen next summer, as it takes quite a while to get it all set up and get approvals from all the necessary specialists.  I am aiming to do it after he gets done with summer school if we can hold out that long.  He will not be able to attend school for at least 2 weeks following surgery but most likely more recovery time will be needed.  I sure wish he didn't have to go through stuff like this.

His scoliosis is looking worse too, and now the doctor recommends that he wear his TLSO any time he is upright in his chair.  We haven't quite figured out how to work out the logistics of that yet.  Once he gets his winter wheelchair cape, it will probably be easier. Goal: to figure it out over break and make it happen by the time he gets back to school.

Zoe is sick yet again.  Super snotty, extra cranky, and waking up way way too early. 

Where has my baby gone?!

First the big girl bed (which she is still doing great in, although not sleeping in as long anymore).  And then yesterday when I walked into Z's classroom to pick her up, she was sitting on the potty!  And she actually went! 

Guess I am going potty shopping soon.  Where oh where did my baby go?

Doing GREAT in the big girl bed!

She is sleeping in the bed really well! She wakes less in the night and sleeps in a little longer so Mom and Dad are big girl bed fans. We will probably take down the crib this weekend.

Here is something funny that Lee texted (love that word!) me today as he was playing with Zoe this morning before he went to work. He said:

• your daughter has started a pizza delivery service. She drives up in her car first and then hands out the pizza and after a while I told her I was too full so she says "thanks for eating pizza. Bye bye." And then proceeds to get in her car and drive away. Quite an operation she has there.

Guess who is sleeping in her big girl bed?

We set up Zoe's big girl bed yesterday and told her it was her choice when she wanted to sleep in it.  Last night she slept in her crib.  Today she decided to take her nap in the bed!  She looks super-cute in there!

Happy Thanksgiving (part 2)

We had a nice day aside from some major crankiness from someone little, cute, and sick.  This morning I could not get anything done without hearing "Mommy, up! MOMMY, UP!" so I wrapped her up on my back.  She was very happy and comfortable up there and I was able to get some things accomplished.  Soon she fell asleep.  Lee snapped a couple pics...forgive the PJs, bedhead, and no makeup.

And here's one of my sweet guys snuggled up on the chair...

Happy Thanksgiving!

Looking forward to spending a nice quiet Thanksgiving with my wonderful family.  Zoe is sick again, if you can believe that.  Feverish and clingy.  Loving the extended snuggle time with my not normally snuggley girl, but I feel so bad for her.  She hasn't really been 100% since starting day care.

Some good news is that Jackson is another few steps closer to getting his ECO2 with ECOpoint.  The assistive tech therapists are going to write it up for insurance.  Hopefully it will get approved straightaway, but I am guessing not.  I am always surprised (shocked might be a better word) when the big things go through without a fight.

The ear problems continue

Zoe finished her 10 days of antibiotics on Sunday.  Yesterday we noticed her playing with her ear again.  Today her other ear drum started draining.  Back to the doctor, and another 10 days of stronger antibiotics.  Poor babe! 

A funny (but typical) Zoe thing:  When I noticed her playing with her ear I asked her if her ear hurt.  She immediately starts screaming "NO NO NO NO!!!" and proceeds to throw a tantrum, rolling around on the floor and everything.

My sweet sensitive boy

We get a lot of library books for Jackson since he really loves when we read to him.  Since Halloween was not too long ago, we still have a "ghost story" type book geared to the young elementary set checked out.

Lee noticed that when he gets that book out and ask Jackson if he wanted to read it, he did some strange posturing.  His arms would go out stiff and his head would turn hard to the left.  (This is not a completely unusual thing for Jackson to do, but it was unusual for him to do it when presented with a book.)  Same thing happened the next two times he got the book out.  When Lee would ask if he wanted a different book, Jackson would vocalize yes.

Today Lee asked me to try, and Jackson did the same thing.  I asked him if he didn't like that book and he vocalized yes.  Then I asked him if he thought the book was too scary.  Yep, that's the reason he doesn't like it...poor kiddo!

Hangin' with my kid

Tomorrow is Veteran's Day.  I have the day off from work and Jackson also has the day off.  We are going to drop Zoe off at day care and I get to have some one-on-one time with Jackson.  I can't tell you the last time I got to just hang with my boy so I am excited! 

Zoe is such an attention hog.  If she is awake she is demanding that I (or Lee or both of us) pay attention to her.  Jackson is really wonderful and patient, but I am happy that I get to spend some time making him feel special.

I don't have anything big planned, but the weather is supposed to be fabulous (it's been near 70 all this week!) so we will definitely be outside for a while.