Woohoo, it's here!

Jackson's eye gaze communicator is here!  We have a lot of setting up to do and only one mount (the wheelchair mount) came with it so we will be limited in its use until the floor mount comes too.  Got a lot of work to do.  Our PRC rep can hopefully come over this coming week (since J is on Spring Break) to help get it working the way he needs it to.

CharleyWrap

Because of his scoliosis progressing, his orthopedic doctor recommended that he wear his TLSO at all times when sitting. We have not done that for a few reasons.  First, the TLSO is very cumbersome and makes caring for him (ie: changing diapers, etc) quite a bit more difficult.  Second, it is hard plastic and it doesn't seem very comfy for him.  Third, it is always riding up on him which is extremely annoying.  And finally, research seems to indicate that neuromuscular scoliosis is going to progress how it's going to progress regardless of bracing.

So we ordered a CharleyWrap for Jackson a few weeks ago, and it came in the mail today.  So far I like it so much better than his TLSO. It seems very comfortable for him and he has been wearing it without complaint since early this afternoon.  We went out to the library today and it worked well in his chair without needing to adjust the laterals.  He was able to sit up nice and straight in his chair without any drooling.  Drooling will happen when he is not feeling good in his chair (which is a LOT of the time) so for him not to be drooling is big.

I do have to open it up for diaper changes but opening it is way less work and time than removing the TLSO.

I like it a lot, and I'm happy we got it.  Here are some pics:

 

And here is a shot of my funny girl all dressed up in her green hat and 8 necklaces...she made me count them quite a few times today, so I know.

Finally!!

Thanks to the efforts of the fabulous Lee Diamond, Jackson is now approved for a purchase of a PRC ECO2 with ECOpoint (eye gaze communication device)!!!  Yay!!!  Can't wait for him to get it!!

Oh, my brother!

I got a text from Lee yesterday on the way to work.  He snapped these pics and wanted me to see them right away.  He said Zoe spontaneously decided to climb up on Jackson's futon, started hugging on him, and she kept saying "Oh, my brother!"  Too sweet!!

The smiley chart

Zoe has some behavioral issues.  I could go into details but words don't really do it justice.  It's just something you have to experience to understand.  So anyway, I decided to try a behavior chart.  We laminated it and use a dry erase marker to make smiley faces on the flowers when she does something good and erase a smiley when she does something she's not supposed to.  The smileys don't necessarily have to correspond with the behavior under it.  Then if she ends the day with 5 or more smileys, she gets to pick a prize from the prize bag.  Sometimes she earns her prize and some days she doesn't. 

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!