Zoe update

She is doing great in her new classroom.  She loves being with her BFF Milly Grace.  Sometimes her first words to me when I pick her up are "MILLY GRACE!".  They are very potty-centric in the classroom and they tell me she is doing very well with that.  At home she will happily sit on the potty but I have yet to witness an actual deposit into the potty.  They say she should be in underwear by the end of July although I am extremely dubious.

As the summer comes, so comes the sun earlier and earlier.  Zoe wakes with the sun and that is not making for a happy mama.  The rule is she is supposed to stay in bed until 6, and she can recognize 6 on her clock (we taped over the minutes so she can only see the hours).  She knows if the clock doesn't say 6 that she is supposed to go back to sleep.  If she stays in bed until 6 she gets a sticker which she is very excited about.  However, she hardly ever stays in bed until 6. :(  I am thinking of painting her windows black.  Seriously.

She has been doing a really cute and funny thing recently that Lee and I just love.  If you say something to her she will sometimes say "Oh really?".  The way she asks it is very earnest and interested and it always makes me smile!  She draws out the "really" part and usually tilts her head to the side when she asks.  Super cute!

Today she told me "I am Dizzy's mommy" and they spent about 10 minutes with Mommy petting Dizzy's tummy.

When she goes to bed, we have to tell her 2 "Miss Wanda stories".  Miss Wanda is a pink horse that she made up and she demands that we make up 2 stories about Miss Wanda before she goes to bed.  She's not really picky about the stories, but there has to be 2 stories or else!

Jackson's 8!!!!

Well, he is tomorrow anyway.  He had a little party yesterday.  He cleaned up on the books this year.  I think his favorite present was some inflatable dinosaurs from Granny.

Opening gifts with help from Dad and Zoe

Cool card from Aunt Rae and Uncle Joe

Clash T-shirt!

Happy kid!

Dad working hard to pump up the giant t-rex

I think he likes it

The whole crowd gathered round the birthday kid

Zoe made a friend

Had to add this pic of Zoe and Granny.  She loves this skirt!

  

PS. We painted our room! So glad to be done with the boring white!

Jackson's Giraffe Report

Jackson had to do a report on an animal for school and he chose the giraffe.  His teacher sent home some pictures of him giving his report.  As you can see, he was enjoying it!

Sorry for the poor quality.  They were sent home printed on regular paper and I scanned them in.

The kids are alright!

I am on spring break (rainy, snowy, yuck, but whatever!) so I finally have time to do a little update. 

Zoe:  Having fun at school.  She is going to be moving up to the next classroom by the end of the month which she is very excited about since her friend Milly Grace moved up about a month or so ago.  It is so sweet to see them together.  They always give hugs hello and they love to play together.

She is still extremely sensitive and emotional, and will cry at the drop of a hat.  She is getting somewhat better at telling us why she is crying though, which helps a little bit.

She woke up crying last night around 11:45 (for about the 3rd time!).  When I went down to see her the conversation went like this:

Me:  Why are you crying, sweetie?
Zoe: Because I'm sad!
Me:  Why are you sad?
Zoe:  I'm sad because I want something!
Me:  What do you want?
Zoe:  I want books!
Me:  So if I give you books you will stop crying and go back to sleep?
Zoe:  yes!
Me:  Ok sweetie, here are 2 books for you.
Zoe:  You wipe my nose and my tears.
Me:  Ok sweetie. 

And then she went back to sleep without any issues. 

Jackson:  I am still working out getting his device set up properly.  I seem to have lost my boardmaker disc so I am not able to use it to make some better icons, which is frustrating me.  I shelled out $300+ to get the boardmaker icons opened on his device (they are in there but they are extra $ to unlock) but they seem to be coming out all pixilated which is annoying me.  The PRC rep is coming tomorrow to help get some stuff figured out.  I have a lot of questions for her.

I have decided to start him with boards that have 15 squares rather than 8.  I feel that it will be hard for him at first but I think that using 15 is way more flexible and can pretty much do everything he will need it to do now and in the future.  Also, 15 is better because then he can have 1-2 blank squares for him to rest his eyes on which do not activate anything.

The mounts for the device are not right yet.  The wheelchair mount needs a different clamp to be stable and we haven't ordered the floor stand yet.  Just waiting on a call back from the mount company to do that.  Hopefully by this time next week all will be perfect!

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.