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. 

Zoe is feeling better today

We took Zoe back to the doctor today to get her labs drawn again since her hemoglobin was low before.  They thought it was most likely just viral but they wanted to be sure it was getting better not worse, which it is.  So yay!

Ear infection

The virus that Zoe had has now developed into double ear infections.  :(

 Can you believe Jackson is 7 and has NEVER had an ear infection?  So this is our first time dealing with them. 

Anyway, one of her ear drums perforated and now her ear is constantly draining.  She's on antibiotics now, so hopefully she will get to feeling better soon.

Lee is super stressed since he has had to stay home with her so much this week, he is not getting any work done.

Halloween pics

We took these at the (rather lame) halloween party we went to last weekend.  Not sure if the kids will want to dress up again tonight since Z is not feeling well and they both already had a halloween celebration at school.  Jackson's duck butt barely fit in his chair!

House of little sickies

Zoe has been feeling ill since Friday evening.  Super-clingy, feverish, fits of crying alternating with fits of coughing, and refusing nearly all food.  Poor little babe.

Jackson doesn't seem to have a fever but he was pukier than normal yesterday.  We went through 4 shirts and 2 pairs of pants (and I had to take apart his wheelchair to clean it).  It may have been that I gave him straight formula rather than blending real food for him as I normally do.  So today I blended for him and so far he is holding everything down.

Hopefully everyone will feel better tomorrow, but I'm thinking Zoe may need another day to recover.  No fun to be sick on Halloween!

Look at my cutie now

She is getting so big and gorgeous.  At school they put her hair up into pig tails often.  (Lee gets her ready in the morning.  He does a great job but he does not do pig tails!)  She had on a super-cute outfit today and adorable pig tails.  By the time the pics were taken one pig tail had come out...still cute though.

Hi Ho Hi Ho

Before Jackson got sick I had been a special ed teacher in a Chicago high school.  Once he got out of the hospital I had to go on leave and eventually to quit to take care of him.  This was more than 5 years ago.  Now that Jackson is doing so well in his school (I don't feel I have to be close by "just in case") and Zoe is old enough not to need me quite so much (ha ha!), we decided the best thing for our family was for me to start looking for a job.  I had been looking since the beginning of the summer and finally found a position recently.  I started last week.

It's been a big adjustment for all of us, especially Zoe.  We found a great day care only a few blocks away.  The director is a parent of a kid who goes to Jackson's school so I kind of knew her already.  Zoe really likes going to school, but she has been a bit of a terror at home (yes, even more than normal).  Plus she has had a constant runny nose since she started there which is no fun.  This weekend we really had to crack down on some of her more out-of-control behaviors and it seems to be working a little already, thank goodness!

Lee has been taking on more of the stay at home role...he gets the kids ready for school after I leave for work, gets Jackson on the bus, and drops Zoe off at school.  Then in the afternoon, he hurries home so he can meet Jackson's bus.  We are not sure exactly what we are going to do about after school care for Jackson but until we figure it out, Lee is the man.

Jackson wants to be WHAT for halloween?

So I was trying to figure out what Jackson wanted to be for Halloween, which consists of me asking him a lot of questions and he will touch my hand when the answer is "yes" to each question to narrow things down.  He said he wanted to be Donald Duck.  Hmmmm, that's not what I would have guessed at all.  Really, I am very dubious at this result.

I made Lee try again with him to be certain that is what he wanted.  He absolutely positively without a doubt wants to be Donald Duck.  Okay...

It's not a very popular costume with the bigger kids.  It wasn't that easy finding a decent Donald in his size that we can afford (plenty of full size mascot costumes for hundreds of bucks out there in adult sizes though in case you were wondering) that does not have a mask (he would gag if we put a mask on him for more than a few minutes).  But we ordered what appeared to be a good one in his size...it didn't have a red bow or legs though.  So I also ordered some yellow sweatpants (which are not that easy to find either!) and I think he is going to be a pretty good Donald.

A funny Zoe story in honor of her birthday

We were out at dinner tonight and she wanted some of my lemonade, but she forgot what it was called.  She kept asking for "whatever it is" pointing over to the lemonade.  We didn't understand her at first, so then she threw a mini tantrum over whatever it is.  She was crying and yelling "WHATEVER IT IS WHATEVER IT IS WHATEVER IT IS!"  When we finally understood what she was asking for, we made her ask nicely.  "PLEASE whatever it is?"

It made Lee and me laugh so hard!

 And now that she has had her official birthday if you ask her how old she is she will tell you "I 1, 2 old!"

Zoe's birthday party

Zoe is not officially 2 until tomorrow, but we had her party yesterday since Aunt Rae and Uncle Joe were in town visiting. She had been seriously studying up on essential birthday party items and making sure we were going to have everything necessary to have a good party...balloons? presents? cake too? blow out candles?

Here we all are singing. I love that Jackson was singing too! And she got to blow her candle out.



Here is her official 2nd birthday party slide show

2nd grade

Jackson started 2nd grade this week.  As usual, he loves school!  Much better than sitting around the house being bored with Mom.  He has the same teacher this year.  He is the only boy in his class this year!  I am not sure if that is a good thing or a bad thing. ;)

We had another incident today with his pump not being on the chair when he arrived at home today.  I noticed right away as I was taking him up the walk from the bus and I was able to ask his bus aide (also the same one from last year) but she didn't know anything about it...she's with another class during the day so she doesn't get his stuff ready to go.  I called the nurse right away when we got in the house and as I was calling her, she was also calling me.  She told me she would be able to drop it off as she was leaving the school, thank goodness. (Jackson is no longer fed continuously so we could have made due without it for a half a day but it is so much easier to have it!)  Then the bus aide called me and told me she had talked to the nurse and that the nurse said that she would drop it off on her way home.

I really love the way everyone at the school takes care of him.  It makes me feel really happy that we made the right choice moving here so he could go to this school.  Especially if you think back to some of the crap that happened back at his old school.  (If you don't remember or are new to the blog you can read here, here, or here. There are more but these are some of the biggies.)

We have been having a small bit of construction done at our house right now...getting a ceiling fan installed in the living room and a fan in the bathroom.  It has been a little more disruptive than I thought it would be.  The living room is our main room.  We do everything in there...all the toys are in there, the TV, computer, the music, Jackson's futon so he can chill before and after school, we even have a table in there so we can eat nearby him.  With this room out of commission for most of the day for the last 3 days, it has been challenging.  And the bathroom...well, you know. Hopefully they will be all done by Friday.  (They had to run electric up to both rooms, cut a bunch of plaster out, drill hole in brick for the bathroom fan exhaust,and then patch everything up which is why it is taking so long) 

Some videos

We had to give back the communicator because the 2 week trial was up, but we will pursue getting Jackson one of his own.  Here are a couple videos of him using it.

The first one he was again playing the chase game.  When there are 4, 8, or 15 squares he does very well and hits his targets easily.  When there are more than that it gets pretty hard for him, but as you can see he put a lot of effort into it and is eventually able to hit even very small targets.

The second video is when he is making his music play.  He hits play and then hits next twice so he could hear a Justin Roberts song.  He just LOVES his music and he REALLY LOVES being able to control it himself.

And I had to put one of Zoe up too.  She likes to play very repetitive games.  Her favorite seems to be putting people (Daddy is her most willing victim) to bed.  She gets a pillow, tells him to lie down, covers him with a blanket, tells him to close his eyes, kisses him good night, and then tells him to snore.  It's kind of weird but it makes her happy.


Here is another repetitive game she was playing with me today.  Sorry for the goofy camera angle but she gets really upset if she sees me filming her so I had to hide the camera.  She is putting a band-aid on my hurt leg...over and over again!

Sassy kid!

Jackson was playing music on his communicator and it was getting a little bit loud.  I told him I was turning it down a little bit and with a big grin on his face he proceeded to turn it back up! :)

I am so pretty!

 She got a pretty new headband and she looked so good she decided to give herself a kiss!

Jackson and his communicator

He is doing well with it.  I got it set up so that he can control a playlist of songs which is VERY motivating for him.  He knows exactly where the music is and gets right in there.  The first song on it is "Hey Bulldog" by the Beatles which is one of his favorites and makes him smile and laugh.  He can play, pause, go to the next song, go to the last song, and turn the volume up and down.

Here is what his home screen looks like.  Each of the buttons goes to another page except for the yes and no buttons.

Some things you just aren't expecting

Jackson had an appointment at Shriners today.  It was so he could get casted for his AFOs and TLSO.  But someone did not get that message so we had to wait and wait and wait for the doctor.  Seriously, no place can make you wait like Shriners.  So finally we get into the room, and when the doctor came in and realized why we had come he was very apologetic that we had to wait needlessly for so long.  But he wanted to take a quick look at Jackson since he was there anyway.  Then he starts saying that clinically he feels that Jackson's right hip is worse even from 4 months ago and that we need to start thinking about surgery.

Um, WHAT!?  I just was not at all expecting that.

Not that I am shocked that hip surgery has come up, it is pretty common in kids with severe CP.  I just wasn't expecting to even be thinking about it TODAY.  We only came in to get casted for new braces!

We don't have to decide to do the surgery.  It is possible that his hip may not eventually become dislocated and even if it does dislocate that it may not cause him pain.  But if it does become dislocated (and that is what the doctor feels will eventually happen) and it is causing him pain, then it becomes much harder to fix it than it will be before it happens.  So we will most likely be doing it.

The procedure is called a varus derotational osteotomy.  Basically they will cut a wedge shaped piece out of his hip bone to change the angle of it so that it will stay inside the hip socket.  I usually like to link to these things but I am not finding a nice simple description or illustration I like so I may keep looking and link later.

Anyway, after that we did go get him casted.  First they casted his feet and legs for his AFOs.  He picked out red straps with a space themed ribbon.  He decided he did not want any transfer patterns on the outside of the AFOs.  He was very definitive that he just wanted them to be white.  Here he is being casted.

Then the fun part (read sarcastically!)...to get casted for his TLSO, he had to put on a very tight gauze body sock and then I get to balance him on that contraption you see in the background.  They call it a table, but it's not a table.  It's a fabric strap strung up that he balances on while his feet are up on the wooden part.  It is CRAZY!  This is our second time doing it so it wasn't quite as bad this time.

His other orthotist always measured him for his TLSO instead of casting him.  It is less precarious to measure for sure, but it is actually quicker to do the casting and I think it fits better when it is casted too.

Here is a better look at the "table".

A funny story:
While we were in the waiting room forever before the appointment, a child life person came through with a cart of toys for the kids.  I looked through it and there really wasn't anything for Jackson.  The books were all coloring books which he can't really do, there were little toy cars which he already has and can't really use anyway, there were stuffed animals but they were all too large or too girly. I just do not need more crap in my house so I was about to pass but she said she had a snow globe for him back in the office that was really cool and she ran off to get it.

So she brought it back to Jackson.  It is NOT a toy snow globe for kids.  It is a big heavy glass and ceramic snow globe of the town of St. Charles, IL with a music box in it.  I think it is pretty weird and ugly and I tried to convince Jackson that he didn't want to bring it home.  But Jackson really likes it and he wanted to bring it home.  So here it is on our mantle...sigh.

We are constantly wondering where she gets this stuff!

So we were at the mall today buying Jackson a Chicago Bears hat.  Of course Zoe had to have a hat too..."Baby hat!"  So we picked out a cute little pink ball cap style hat for her.  Lee put it on her while we were waiting in line to pay.  She then takes it off her head and proceeds to turn it around so that the brim was in the back.  Seriously, she isn't even 2 yet!

If you ask her what her name is she will tell you "Zoe" and then she will think a little bit and tell you "Diamond".  One day she when I asked her her name she said "Zoe" and then asked me "Baby too?" because we often call her Baby, she likes to be called Baby, and she often refers to herself as Baby (like in the hat store).  It made me laugh...we then talked about nicknames a little bit. 

ECO2 with ECOpoint trial (eye gaze communicator)

Jackson got his 2 week trial of the ECO2 yesterday. He is doing pretty good with it so far.

Jackson gets really tired sitting up in his chair very quickly so I figured out how to set it up so he could use it lying on his futon (thanks, Joan, for the idea!). Here is a video of him playing "chase me", where he uses his eyes to find the target. As he plays longer, the target gets smaller and smaller. As you can see, Zoe really want to get in there and play with it too.

What a sweet lil sister

Zoe decided it would be nice to show Jackson all her "friends" (the ocean creatures) so she brought them all over and put them on his futon where he could see them.  She even put a monster in each of his hands.  Then she showed him her weebles and told him what each of them were.  Very sweet and Jackson liked it a lot too.

Zoe video

Drama of the week

So Monday was a normal day.  Zoe, my little monkey, was begging to get swung around so of course I had to do it.  She kept on asking for more and more, she was even saying "please".  Until something snapped in her arm! :(

Usually she is pretty upset immediately after she gets hurt but then I nurse her a bit or give her some ice and she is fine.  Not this time.  She would immediately start crying when anyone would move her arm at all.  So I took her to the ER (our pediatrician's office was already closed).  They were pretty sure the arm was not broken and that it was something called Nursemaid's Elbow.  So the NP felt around her arm and put it back into place and was confident that she was good to go.  But Zoe was still not willing to move it and when the doctor touched it she started to freak out.  So we did end up having to get some x-rays.  No, it was not broken so we finally got to go home.

The next morning she was moving her arm and using it like normal.  Thank goodness!  And she still begs me to swing her around (but obviously I'm not doing that anymore!)

Mask

Jackson's camp was supposed to take a trip to the zoo today.  It was really hot though (heat index 100+), so I think they ended up not going.  But he did come home with a really cool mask and necklace!

Once again, my daughter amazes me

Zoe has always been very sensitive to sounds and very aware of different sounds.  Sometimes that's not so good, like when she freaks out if I turn the dial on my iron or when I use the can opener.

But sometimes it's pretty cool!  She wants to know what every little tiny sound is, and sometimes I don't even hear what she is listening to until she points it out.  Most recently she has been interested in the sounds the cicadas make.  I told her those were bugs in the trees singing, and that they were called cicadas.  Now when she hears them she says "sound cicada!" very excitedly.

YAY!!!!

I am very excited that Jackson has just been accepted into the Starlight Children's Foundation Great Escapes program! This is a "non-profit organization dedicated to helping seriously ill children and their families cope with their pain, fear, and isolation through entertainment, education, and family activities.  The Great Escapes program provides a variety of special activities for seriously ill children and their families which are designed to relieve the stress and anxiety that serious illness imposes, and most importantly, allow for you to have FUN!"*

Some online friends of mine suggested we apply for it, and the first application I sent got lost.  I sent it again and we just got the package today.  I am really excited for Jackson to get to do some fun stuff outside of school!  It is really hard for us to think of things he would like to do, that he would be able to do, that we would be able to afford.


*I don't think of Jackson as being "seriously ill".  In fact, for a kid with as many health issues as he has, I would consider him pretty darn healthy!  But he fits the criteria of the program, so that is the important thing.

About time for an update, don't you think?

Jackson's summer school ended last week and this week he is starting summer camp (had his first day yesterday). It's actually at the same school, but it is through special recreation rather than the school district and has a whole different set of people for the most part. It's a little stressful getting everything worked out. There were a few interesting SNAFUs yesterday but he seemed to have enjoyed it and that is the most important thing. At least that is what I keep telling myself.

Today he is going to the beach, which brings a whole new level of stress for me. It is super hot today so I really hope they are able to keep him cool enough (since he has temperature regulation issues) without freezing him in the lake. Plus, they are changing the kids into their swim suits (and swim diapers) before leaving the school. So I have to worry that (because swim diapers are not made to hold pee, only solids) he will soak his wheelchair on the bus ride there or the bus ride back and then have to sit in a pee soaked chair all day. Hopefully they will follow my instructions and everything will be fine.

Lee's friends have been working for a long time on adapting our special needs jogging stroller to double as a bike trailer. Finally, after more than a year, it is finished. The guys took it for a short test run up and down the street and it worked well. We just have a few improvements to make (getting a 5 pt harness on it and improving the canopy coverage) and it will be perfect.

Here is a video of the test run. It was really hot so we were not able to do a longer ride, but the guys both enjoyed it!

Zoe is doing well. She is loving playing in her sandbox and her kiddie pool. That and loving on her dog...perhaps loving on her dog a little too much.

Jackson's Cow

Jackson made a cow in summer school this week.  I don't know what it was about this cow that he liked so much, but he grinned and grinned as he was showing me and he seemed very proud.  So I had to share! :)

Splashing!

Zoe LOVES the water!  Today was a hot one so we suited her up and went out to play in the sprinkler.

Someone needs to buy this child a wading pool!!!!  Yeah...it's on my to-do list!