Guys...you got to share

Zoe and friends were having a little picnic and her friends did not want to share their cups.  She sang them a song to convince them that sharing is necessary. Love her!

Medicine

This is how much medicine Jackson takes in one day.

Be jealous!

Jackson's new chair is here and it is sooooo cool!!! He got a Zippie Iris.  Thanks to ideas from some of my mom-friends' kids' chairs, Jackson's chair is awesome!! He can sit in it so comfortably even without his CharleyWrap on, and relatively upright too.  Special features include: arm blocks, elevating leg rests, two headrests (flat one for recline and the HAWC headrest for upright), tilt in space, and recline.  We are waiting on new casters (Frog Legs casters are the best!) but otherwise it is wonderful.

Front view.  Notice the arm blocks.

This is very upright for him, and he is comfy.  Notice how the arm blocks keep his arms from pulling his shoulders back behind his body.

Front view. 

Other side.

It has a level so you can see exactly what angle he's tilted to.

Back view.

You can see where the other headrest plugs in here.

The leg rests go up!!!!!!!!  Awesome!!

Alternate headrest in tilt and nearly full recline with feet up.  You can see how the HAWC headrest swings back.

Comfy!

I went a month and a half without blogging! :O

We are fine.  Times flies when you're busy!  Waiting for Jackson's new wheelchair to get here.  The last story I heard about 2 weeks ago was that it should be here in 2 weeks.  So it's almost time to start stalking this lady again.  Can't wait until we get it!

He is having his 3-year reeval for school this year so that will be interesting.  Lee is going to the pre-eval conference later this month. 

He is going again to over night respite the Thursday and Friday of his spring break (first week of April).  He gets really bored over breaks from school and this is a good way to give him something different to do than just hanging out at home the whole week.

Zoe is doing well.  Nothing really new to report with her that I can think of!

Chinese New Year Part 2

Zoe's teacher sent me these cute pictures.  She can't stop talking about Chinese New Year! :)

My sweet cutie!

Got a great note from Jackson's teacher Wednesday:

I placed him next to another student (a girl).  He raised his right hand and extended it towards her.  We said, "are you trying to put your arm around her?" and he smiled and laughed.  It was so cute!

Chinese New Year

Zoe had Chinese New Year festivities at her school today.  She had a great day!  But she forgot her chopsticks at school which she only realized when we were already in the car.  I was not going back up to her classroom to get them and she was close to tears.  I told her we had chopsticks at home.  She asked if she could eat her dinner with them.  I told her she could and to remind me at dinner.  She did ask for the chopsticks and she ate her dinner exclusively with chopsticks.  In fact, she was looking at her fork with disdain and asked us "why did you bring me this?".

I got a super cute picture of her with her chopsticks and noodles but somehow my stupid computer deleted it.  So you will have to take my word for it...she was one cute and proud chopstickin' little girl.

First 2012 post :)

Happy New Year!

Big news this week is that Jackson had his first overnight respite.  We took him to Misericordia, which is only a 5 minute drive from our house.  It was just one night to get him acquainted with them and them with him.  We will probably start doing longer stays.

He was kinda pissed off when we left him and he fell asleep (on purpose--he does that when he is upset or doesn't want to deal with something)before we went.

He did activities like art and sensory room.  We called him and spoke with him that evening.  The nurse said he was smiling big while we were talking to him.  I asked him if he had a good time he said yes.  I asked him if he would want to stay overnight again and he said yes to that too. Yay!!

We all missed him a lot!  In the mornings I put on shows for Jackson and Zoe told me "Jackson needs a new show".  I had to remind her that Jackson wasn't here and she was really surprised!  She did enjoy some extra attention though.

It's funny that I really don't usually feel like I have to do that much extra work to take care of him.  But when he is gone is when I start to realize that it really is a lot of extra stuff that needs to happen to keep him well.  It is nice to get a little break.

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!