Merry Christmas!!

It was a nice Christmas and for once I think Jackson is really enjoying his presents!  He is so hard to buy for since can do so little independently, but we did good this year.  He got an ipad with a mount so he can use it on his futon and his wheelchair.  Here he is splashing in his koi pond scaring the fish and turtles.

There are so many reason why this is a great present for him.  It can be a passive thing for him if he is not feeling like doing anything.  It gives him something to visually stimulate him while he is listening to music.  If he is feeling up to interacting with it, there are tons of cause and effect apps for him to use independently.  If we do hand over hand, he can do some more advanced educational apps.  We can make a youtube playlist and have it play back to him. It is something that Zoe can do (and wants to do) with him.  And one of my favorite things is that it can get him looking to the right side, which we can rarely get him to do!

He also got a really cool light up switch toy, a bubble blower switch toy, and soft soled leather shoes that I sewed for him, among other things.

Zoe also had a great Christmas, but she is much easier.  She got books, puzzles, legos, a toy piano w/a microphone, and a camera plus more stuff too.

Hi, we're still here!

I'm just too tired to blog...zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.  Sorry!!

Perhaps time for an update?

Yes, maybe a wee bit past time.

Well, Halloween was fun.  I know you want some pics!

In other news:
Jackson recently had some sort of leg injury in his left (non-surgery) leg.  We took him for xrays and to the ortho, but they did not find anything.  It's feeling better for the most part now.

He has also had an infected toe.  It has been funny looking since his surgery and also happened to be the toe where the pulse ox sensor was taped.  3 course of antibiotics later, it is hopefully on the mend.

We are about to start the process of getting a new wheelchair for him.  He has had his current chair since around the time he turned 2!!!  I was hoping for a vendor that would be a little better than our current one but after asking around it seems they are still the best around.  SAD!

And we recently toured a respite place.  They are really good and only a 5 minute drive.  We are going to start Jackson out with one overnight in January and then as needed.  Perhaps one day we will feel comfortable enough to go on a vacation without children!  Wowza, what a concept!

Beads of Courage

We just signed Jackson up for a really cool program called Beads of Courage.  They reward kids with serious illnesses with beads for each and every medical thing that they have to go through.  Jackson got his first shipment of beads today and we strung some of them for him.  We ran out of string...it's a TON of beads.  He really likes holding them and looking at them, and his favorite part is that it is something that is only for him and not for Zoe. :)

Happy birthday, ZOE!

Zoe turned 3 last week!  Granny and Poppop came to spend the weekend with the birthday girl and to take her swimming for the first time.  She got many great presents.  Some of her favorites include a zebra pillow pet, a puzzle, a piggy bank, a cookie play set, and a set of Beatrix Potter books.  We had a mini party on Thursday (her actual birthday) and then a bigger party Friday with Granny and Poppop.

Birthday girl with tiara

Birthday cupcake on her actual birthday

Opening present with Dad on Thursday

Her real birthday cake.  She specifically asked for a strawberry cake.

Blowing out candles

Outfit from Granny

More presents

Doing her puzzle with Granny

Saturday Zoe went to the hotel with Granny and Poppop to go swimming.  She wasn't too keen on the pool at first but then she got used to it and ended up having a good time.

Before swimming

First time in the pool

Kicking and splashing

More kicking

Learning to blow bubbles

In other news, Jackson had his 8 week follow up for his hip.  He is doing great.  He is now allowed to bear weight and do unlimited ROM.  He also only has to wear his wedge at night only.  Yay!!

Jackson's post surgery appt.

 He's doing well.  He still needs to wear his wedge and can't start weight bearing yet, but he can begin gentle passive ROM stretches.  His hip is nicely where it should be.  His incisions look good.  He needs to go back in 4 more weeks (which will be 8 weeks from surgery).

Here are a couple of pics of what his incisions looked like a few weeks ago.  He has 3 incisions...2 large ones on his hip and a smaller one by his groin.

Zoe is doing great with potty training.  She is in underwear all the time now, except for night time sleeping.  She hardly ever has an accident and mostly stays dry all night.  She really wants to wear underwear to bed.  I told her if she stays dry for 7 nights in a row she can start wearing underwear to bed.  So far it's been 2 nights.  She did wake up in the middle of the night one night to pee.

Here is a cute picture of her wearing her PJs with her winter boots which she absolutely HAD to put on right away.

We are going to get rid of her high chair next week (after we buy a larger table to make room for her eating on the table instead of her high chair tray).  She is really growing up!!

Proud!

Zoe's first day in underwear today. She did great in school (stayed dry all day) and then came home and peed on the floor. Oh well.

She was so proud of her underwear though. She kept lifting her dress up to show people!

He's doing well, mostly.

Jackson had his surgery on Tuesday. They weren't sure of what all they were going to do until they went in. He had a tendon release, osteotomy, and cup augmentation on the right side. The doctor said he will probably need the same on his left side within a year or two.

Was in PICU Tuesday, Wednesday and part of Thursday. He did not want to come off oxygen which is why they kept him in PICU. Got moved to the floor Thursday afternoon. Went home on Friday. He has a big wedge that is strapped between his legs.

Pain is pretty well controlled with lortab every 5 hours. It makes him drowsy and he sleeps a lot. The biggest problem is that he's not pooping yet. I gave him a glycerin suppository earlier. The discharge nurse just called and said that we should add another senna daily in addition to his miralax and senna he already takes. Hopefully he will go soon. And not get his wedge all poopy.

Zoe was really sad and confused as to why I wasn't around all the time. She is a big time mama's girl and she really missed me a lot. Lee said she was crying one night for me around 1 am. She is feeling much better now that we are all together again. Unfortunately she is complaining of her ear hurting again so I guess we're going to the doctor tomorrow. I see tubes in her future.

Update on J's upcoming surgery

Things have changed a little bit from the original plans. He is going to Children's the morning of the 25th to get a PICC line placed. Then the surgery (VDRO) will be the 26th at Shriners. We have to be there at 6am (ouch!). It will take 4+ hours depending on what exactly they will be doing, which depends on what they see when they get in there.

A cute little thing

Jackson was playing with his communication device just now. He called "Zoe, Zoe, Zoe, Zoe" and then Zoe answered "I'm right here, Jackson!"

LOVE!! <3

Swinging!

We just got a swing set and Jackson got a special swing (all the way from Germany!) that he can lie down on. We finally got it put together and even though it was super hot today we went outside to test it out. The verdict: everyone likes it but I guess it is a relaxing swing since both kids were nearly asleep by the time they had swung for 10 minutes or so.

Summer has arrived

After rainy and cold Spring, Summer has arrived.  It is hot and humid today.  Jackson, Zoe, Dizzy, and I are all huddled up by the AC in the living room (no central air here). Lee is out working today.

Jackson is officially done with his summer school (ESY) program.  On Tuesday he starts his summer camp program for 3 weeks.  It's at the same school but run through the park district instead of the school district. A lot of the parapros are the same so there is always someone who knows him there.  They do more recreation stuff, like go to the beach.  Last year he got a tan on his legs.

I am doing a summer school program at my school.  I decided we could use the money and they needed someone last minute.  It's only 4 weeks, M-Th, and ends at 12:30 each day.  It's with incoming freshmen, and most of the kids are really good but the classes are large.  The AC in the classroom is not working though, so that is kind of rough.  It ends the same day that Jackson's summer camp ends.  Then the next week is his hip surgery. I am so not looking forward to that.  :(

Zoe is still working on pottying.  She still hasn't made pee in our potty at home, but her teacher is certain that she is at school.  Lee says he thinks it's possible that peer pressure could be influencing her to use it at school.  Maybe.  Maybe not.

Lee's parents arrive on Tuesday, so it's going to be an exciting week coming up!

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!!