Jackson and Zoe's Daily Updates

Chinese New Year Part 2

2012-01-28T15:26:00.001-06:00

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

My sweet cutie!

2012-01-28T12:58:00.000-06:00

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

2012-01-23T21:43:00.001-06:00

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 :)

2012-01-05T15:55:00.001-06:00

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!!

2011-12-28T15:29:00.000-06:00

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!

2011-12-06T18:33:00.001-06:00

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

Perhaps time for an update?

2011-11-08T18:04:00.001-06:00

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

2011-10-08T16:12:00.000-05:00

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!

2011-09-25T13:21:00.001-05:00

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.

2011-08-24T13:45:00.002-05:00

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!

2011-08-01T20:42:00.000-05:00

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.

2011-07-31T17:35:00.003-05:00

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

2011-07-18T14:34:00.003-05:00

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

2011-07-17T16:24:00.002-05:00

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!

2011-07-10T15:45:00.004-05:00

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

2011-07-02T15:58:00.000-05:00

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

2011-06-15T18:13:00.000-05:00

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!!!!

2011-05-30T13:42:00.002-05:00

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

2011-05-21T10:18:00.000-05:00

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!

2011-04-19T10:23:00.000-05:00

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!

2011-04-03T13:07:00.000-05:00

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

2011-03-26T17:45:00.000-05:00

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!!

2011-03-10T16:52:00.000-06:00

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!

2011-03-05T14:18:00.001-06:00

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

2011-03-04T21:55:00.001-06:00

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

2011-02-24T18:26:00.000-06:00

nope, can't do it! but I have to do something to get the snow off the top of the page!
;)

SNOW!

2011-02-03T15:50:00.000-06:00

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

2011-01-26T21:49:00.000-06:00

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

2011-01-15T09:32:00.000-06:00

Love the "lmnop" part!

Go check this out.

2011-01-14T17:40:00.000-06:00

"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

2010-12-30T10:23:00.000-06:00

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...

2010-12-18T12:45:00.000-06:00

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?!

2010-12-04T09:16:00.000-06:00

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!

2010-12-01T21:08:00.001-06:00

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?

2010-11-27T12:43:00.000-06:00

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)

2010-11-25T20:56:00.000-06:00

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!

2010-11-24T20:52:00.000-06:00

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

2010-11-16T21:44:00.000-06:00

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

2010-11-15T19:21:00.000-06:00

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

2010-11-10T20:53:00.000-06:00

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

2010-11-06T14:12:00.000-05:00

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

2010-11-04T16:24:00.000-05:00

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

2010-10-31T15:05:00.002-05:00

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

2010-10-31T10:20:00.000-05:00

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

2010-10-21T18:20:00.001-05:00

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

2010-10-17T17:36:00.001-05:00

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?

2010-10-07T12:51:00.001-05:00

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

2010-09-22T21:16:00.001-05:00

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

2010-09-21T11:31:00.002-05:00

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

2010-09-01T21:36:00.000-05:00

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

2010-08-28T14:41:00.001-05:00

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!

2010-08-23T14:51:00.000-05:00

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!

2010-08-22T17:58:00.001-05:00

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

Jackson and his communicator

2010-08-21T12:12:00.000-05:00

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

2010-08-17T22:06:00.002-05:00

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!

2010-08-14T21:39:00.000-05:00

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)

2010-08-13T16:32:00.002-05:00

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

2010-08-09T10:17:00.001-05:00

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

2010-07-23T09:12:00.000-05:00

Drama of the week

2010-07-21T12:03:00.001-05:00

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

2010-07-15T16:18:00.000-05:00

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

2010-07-12T16:57:00.001-05:00

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!!!!

2010-07-07T14:48:00.001-05:00

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?

2010-07-07T12:31:00.001-05:00

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

2010-06-24T18:07:00.001-05:00

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!

2010-06-18T15:39:00.001-05:00

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!

blablablablabla!

2010-06-11T17:49:00.000-05:00

Oh what a crazy day! I had to take the van into the shop to get the AC looked at today. Made an appointment for 10 and left with plenty of time but my stupid navigation system sent me all sorts of wrong ways and then said I had arrived when I was still about 20 minutes away! Meanwhile as I am trying to figure out where the heck I am, the school nurse called with questions about Jackson's feedings. The regular nurse retired at the end of the school year so this was a nurse that had taken over for her, although she has been at the school for a while.

When I finally got there, I sat and sat and sat and waited and 2 hours later they still hadn't even looked at the car! The guy came into the waiting room and said all his guys went to lunch and it would be another hour and a half!! Ok why did I even bother making an appointment?!! I complained to someone who was obviously higher up than the guy I was talking to at first and they got it done in 30 minutes. Grrrr! And I should mention they were not actually fixing the problem, they were only making sure they knew what the problem was so they can order the parts which will then need to be installed when they arrive in about a week.

Lee was home with Zoe and he had to cancel some appointments because it took so long for me to get back. It was so hot and muggy today, I sure could have used the AC on the way home. Then once I did get home I had to grab up Zoe and run to the grocery store before Jackson got home from school. It is so much easier to only take one kid with me and not have to push the wheelchair while pulling the cart. He had been off school for the last 2 days and I had been sick on Tuesday when I had originally planned to go so by now we were low on everything. And it's the weekend so if I waited I would have had to do the push-pull with Jackson tomorrow.

So then I got all the groceries (did I mention I forgot to bring my list!) loaded into the house and put away and I was about to sit down and relax when the phone rang. It was Jackson's school. The AC on the bus had broken and they wanted to know if I wanted to come pick him up. I asked how long of a bus ride it would be and they said 45 minutes so I did go pick him up so he wouldn't have to spend that much time on a super hot bus. Instead he got to spend 10 minutes in our slightly less hot van. (I should mention that I really like the aide they have on the bus for him. She was the one who let them know to call me to see what to do and she waited with him inside the school and brought him out to the car when she saw me pull up.)

So I got him into the house and was about to give him water. I looked on the back of his chair for his pump and guess what... It wasn't there! I called the school hoping that they would still be there. Luckily they were. Yes, the nurse had the pump in her office and had forgot to put it back on the chair when she was finished rinsing it. But she offered to bring it to us....YAY!! I was so relieved I did not have to get the kids back in the car and go get it. And we could not have done without it all weekend.

The other frustrating thing that was going on at the same time is that our halogen light in our living room had broken for good last week. I spent all week trying to find another very bright floor lamp since we have no overhead lighting in the living room, that is the main light source for the room we spend the most time in. I ordered one I liked and it had come today. I was trying to put it together but the very last part would not go together...the little tiny parts were bent somehow and just wouldn't slide into place. Of course it was 30 minutes after the company had closed for the weekend so I have to wait in the dark until Monday to see what to do.

Hopefully the rest of this evening will be smooth sailing! ;)

Last day of school!

2010-06-09T12:13:00.001-05:00

Jackson had his last official day of the regular school year yesterday, so I now have a big 2nd grader!! He gets today and tomorrow off and then he starts summer school on Friday. If you didn't know, kids in special ed can go to school during the summer if the IEP team thinks they will lose skills with a long break from school. He loves school anyway so everyone is quite happy with the arrangement. He will attend 3 weeks of "school" (educational) and 3 weeks of "camp" (recreational).

Tomorrow we are getting his wheelchair and his stander repaired. His wheelchair brakes fall down onto the wheels (making it very difficult to push) if we are walking any distance. Also, his chair takes quite a bit more effort to push than the loaner chair (remember the purple chair?) did so I am hoping that they can do something to make it roll easier. His stander was actually repaired in the winter, but is again having problems. If I stand him at an angle above about 45 degrees, it will not lock into place. It ends up either creeping forward or back, which is not at all safe. At an angle below 45 degrees, it does lock into place but there is not much point at all in even putting him into the stander at that angle.

Jackson is 7 years old!

2010-06-02T10:32:00.000-05:00

Jackson turned 7 on Memorial Day! We celebrated the day before (thank goodness since Monday was quite rainy!) with a picnic and a little party. Granny came to celebrate with us and actually ended up staying an extra day due to the weather.

Here are some pictures of our picnic! Zoe spent much of the time playing in the dirt under a tree. I found out that Lee can not stand to see her dirty! He is pretty obsessive about it. It made Granny and me laugh!

Jackson enjoying chilling in the great outdoors. Granny made him his own padded waterproof mat to lie on .

I showed Zoe how to put maple seeds on her nose. She thought that was great fun! Did you ever do that as a kid? Lee hadn't, so it was new to him as well.

Jackson was not quite as impressed with it though!

Here, try it! It's really fun!

And pics of our little party...

The cake. Jackson did have a little taste of the frosting and some ice cream.

A motion activated monkey that rolls round laughing hysterically. Jackson found it pretty funny but I think Lee liked it even more than Jackson did!

A big scary dinosaur! Jackson really liked that one and tried to hug it!

He got a ton of books!

Here is Zoe checking out one of his new books. (I made her skirt, I am so proud of myself!)

And they are holding hands while checking out another book together...how sweet is that!

Zoe and Granny reading

A repeat for some of you

2010-05-26T10:59:00.000-05:00

but it's too cute not to put on the blog also. She got a bit camera shy but she was really going good before I got the camera out. Presenting Zoe's "I Love You" song.

untitled because i can't think of anything to call it. just an update i guess

2010-05-20T16:07:00.001-05:00

We had Jackson's IEP meeting on Tuesday. Everything went well. It was short and easy. Pretty much everything is staying the same, which is fine with me. Except that his vision teacher is moving to consultative only (rather than providing direct services) which I don't think makes a lot of difference since she is always saying that she doesn't see a lot of characteristics of CVI in him anyway.

Zoe is talking more each day. She is stringing 2 and 3 words together in sentences now. She feeds her dolls and stuffed animals the same things she eats and often can be found hugging and loving on them. She does this really cute "ooohhhh" noise as she hugs them. And she has started to put on my shoes and walk around with them on. She is turning out to be a very good little girl, if not a bit over-emotional at times.

Some pics and videos for your viewing pleasure:

My 3 sweeties snuggling up

Zoe swinging in the park last week. It was cold that day!

Taken by Jackson's teacher on a field trip. He is having a blast bouncing!

Talking!

Walking in Mom's shoes

Ultrasound results

2010-05-13T15:27:00.000-05:00

Everything looks normal.

My funny girl

2010-05-10T21:36:00.002-05:00

For the past 2 days she has been running around saying "mee chuu". At first we could not figure it out...until she started shaking hands. It turns out she is saying "nice to meet you!" She will shake her own hands, shake my hand, Lee's hand, Jackson's hand, the dog's hand, even shake her feet!

Hilarious and adorable is my girl! I sure do love her!

Alright, time for more boring medical stuff

2010-05-10T16:12:00.002-05:00

So anyway, Jackson had an orthopedic appointment last week (Tuesday I think it was).

Hips look about the same, so good. Right hip looks worse than left. They both come out of where they should be when the legs are straight. They both look a lot better when his legs are frogged. Luckily that is a position that he kind of favors naturally so we are still just watching them with yearly x-rays and not treating yet.

Spinal curve has progressed somewhat to about 30 degrees. The doctor says this is a slow progression and we will continue to watch with x-rays every 6 months. He should continue to wear his TLSO as needed for support in sitting and standing, but does not need to wear it all the time.

His braces are getting small but still fit well enough that we can get a few more months out of them. We will go back in August and get casted for new ones.

His right leg is shorter than his left leg and his right arm is smaller than the left arm. His doctor was somewhat concerned about the atrophy. He said it can be an indication of kidney problems so he ordered an ultrasound of his abdomen. Personally, I don't feel there are kidney problems and we can chalk it up to his wonky central nervous system, just like every other problem he has.

So today we went to get the ultrasound done with a fun stop at the lab first to get some blood drawn to check his seizure med levels. It was an easy, painless (aside from the poke at the lab, but they got it on the first stick so a-ok), and fast test. He was back at school by 11 am.

They said the report should be sent by tomorrow to Shriners so if I don't hear I will call Thursday or Friday. But like I said, I don't think there will be any kidney surprises.

Another one that made me laugh

2010-05-09T10:35:00.002-05:00

I was in Jackson's room getting him dressed this morning. Zoe comes in and starts looking around at his walls which are decorated in a space theme. She points to a planet and says "ball". Then she points to an alien and says "martian" clear as day.

Isn't she a riot?! Where does she get this stuff?

This girl kills me sometimes!

2010-05-07T09:08:00.003-05:00

She is too smart! I was just getting her dressed and as we were putting on her pants, she started making her what-is-this-called sound. I was a little confused since I know she knows they are pants and it is a word she says often, but I told her they were pants anyway. Then she says "purple!" All I could do was laugh...yep, the pants are purple!!

She's only 19 months old!

A beautiful day

2010-05-05T21:38:00.001-05:00

Jackson had only a half day of school today so we spent most of the afternoon out in the back yard. It was just about perfect weather...nice and sunny, about 70 degrees, and a cool breeze. Jackson doesn't get to spend a whole lot of time outside because he is so sensitive to the cold and heat, but today was a good day for him to be out as long as he was in the shade.

He wanted to enjoy some tunes while we were out there. Not sure if you can see from the terrible pics my phone takes but he is grinning like crazy!

Today Zoe decided she wanted to sit ON the flowers. I told her not to sit on the flowers, that it will hurt the flowers, that she could sit next to the flowers and gently touch the flowers...but then she had a bit of a tantrum. I had to give her a time out, which she really hates, and then she decided it really was ok to sit next to the flowers after all.

Here she is sitting on the flowers which are now flat.

Yes, we have a bathtub full of dirt and plants in our yard. It was there before we moved in! I kind of hate it and wish I could get rid of it, but it is too heavy for me to do myself. It does give Zoe something to dig in though. She loves playing in the dirt. :)

This made me smile!

2010-05-03T22:08:00.000-05:00

Every day I get a note from J's teacher describing some things he did during school. Since he can't talk, he can't really tell me himself and I like to read the note in front of him and ask him questions about his day. Today she wrote:

"During circle I told everyone that the new month was May. Jackson got a big smile on his face. So I said 'What's so special about May?' And he smiled again. Then I said, 'Oh I know why you're happy it's May- because it's going to be your birthday!' and he giggled. It was really cute. He was very excited to tell everyone the date."

Something new.

2010-05-03T21:41:00.000-05:00

Today I noticed that Jackson's arms are quite a bit different in size. I was trying to warm him up after he got off the bus (they gave him an air conditioned bus per his IEP, but it was a bit much today). While I was rubbing his arms, I thought his arms did not feel the same. So I measured and his left arm is a full half inch larger in diameter than his right arm at the wrist and a quarter inch larger at the elbow!

I have also thought several times recently that his left leg looks quite a bit longer than the right while he was sitting in his wheelchair. But then sometimes it looks fine, so then I think to myself that he was probably just sitting crooked.

His left side is his preferred side so I guess it does make sense. Something to ask the ortho about...guess it's lucky we have an appointment tomorrow.

Tricycle for Zoe

2010-05-03T15:20:00.000-05:00

I finally dusted off (literally!) Jackson's old tricycle for Zoe. It's a Kettler tricycle with a pushbar. As it turns out she is a lot smaller than he was at that age so her feet hardly even touch the pedals. But she still loved it when I pushed her all around the neighborhood. She kept signing for more (that is one word she still always signs and never says).

No pics since it was just me and her and I had to push. Maybe if we have some nice weather this weekend I can get Lee to take some.

Jackson never liked riding on it (and he was really too little to pedal himself before he got sick). He wanted to get behind it like Mom and Dad and push it!

Jackson's neurologist appointment

2010-04-30T11:22:00.002-05:00

The appointment was in Milwaukee. I don't know if I ever blogged about why we don't go to neurology here anymore, but to make a long story short we get much better treatment up there. I never really cared personally for his neuro there but he always seemed to treat J's seizures effectively so I never pushed to switch doctors. There was another doc that I met (who happens to be the head of the epilepsy program there) when we were inpatient doing long term monitoring and I would love to switch to her. Unfortunately I overheard someone scheduling an appointment with her while we were there and she is scheduling already for summer 2011!!!

It was an interesting appointment. I had an appointment scheduled for last summer but it was right after we moved and I didn't feel any pressing need to go so I pushed it back to winter. Of course, it stormed the night before the appointment and no way I was driving up there in that much snow so we finally had our over-due appointment.

Last spring, Jackson was going through some testing through an adult neurologist at an affiliated hospital who specializes in dysautonomia. Some medications were tried and failed and then they said we should follow up with peds neurology. The person who was supposed to call us never called us, and then we got busy moving, so we never followed up.

I asked our neurologist about it when we were there yesterday. I had tried in the past to get him to help out with the autonomic issues Jackson has but he has never been interested in treating anything besides seizures. He looked up the records while we were there and saw that there was one more medication that was recommended (verapamil) that we had not tried so he rx'ed that. Unfortunately the pills are too big to split for the dose Jackson needs, so we have to find someplace to compound it.

He also said that the other neuro had said we could do a skin biopsy to check for the presence of sweat glands (he does not sweat) and if there are some present we could try a cholinergic medication to possibly help him sweat. I have problems with this.

First, he is already on an anticholinergic and I have concerns that the 2 meds will cancel each other out.

Second, I do not want to put him through a skin biopsy unless there is a good reason to. He went through all that autonomic testing for what I thought was a good reason, but it just turned out that they were trying to see if the issue was a primary dysautonomia or secondary to his brain injury. Well, the geniuses came to the conclusion that it is secondary to his brain injury. Which I could have told them. Because it's pretty obvious to anyone who has any kind of common sense. So therefore, if the dysautonomia is secondary to his brain injury, would it not be a logical step to conclude that he does indeed have sweat glands, that they did not just one day disappear? Does he really need to give up pieces of his skin to figure this out?

Well, both of these reasons seemed to confuse the neurologist. I never really thought of him as not too bright before (just lacking in people-skills) but now I am questioning this. Although, after I told him both of these reasons, he did seem to agree with me on both issues...but it just took a while for the gears to turn. Plus he did not know that robinul is an anticholinergic which is somewhat frightening to me.

So now, even though she is booking for next summer already, I am thinking hard about making that switch.

Some good news!

2010-04-26T16:40:00.001-05:00

I am happy to report that not only will Jackson be starting up respite again next week (his previous respite worker's last day was last Monday) but it will be his old respite worker, Kerry, coming back to work with him! I am excited because she was just great with Jackson personality-wise as well as being extremely competent as far as caring for him. His last respite worker was lovely and also very competent but she was a more mellow person and Jackson is more of a rough and tumble kid.

When I told Jackson she was coming next week he gave a big smile!

Not much to report, just living life.

2010-04-19T21:57:00.000-05:00

And my computer is dead so it is not as convenient to update. I have to get a new one since it is just as much to fix my years old one. But right now, there is no money so no computer. Hopefully soon! :)

Jackson's class had a trip to the high school to go swimming in the pool there. They said he liked it a lot but only wanted to swim about 20 minutes. I am guessing because he got cold. He needs a super warm pool to be able to really enjoy it for more than a few minutes.

He has a somewhat overdue neurologist appointment coming up this month, an orthopedic appointment in May, and I should make a physiatrist appointment for him soon as well.

Zoe is just exploding with words. I tried to estimate how many she has now and it is easily over 100! She is constantly astounding me with what she knows. For example, we were reading a book and she loves pointing to different things in the pictures so I can tell her what they are. She pointed to a clock so I told her it was a clock, then she noticed there was a bird on the clock so I told her that was a bird. Then she says "cuckoo cuckoo"! How in the world does she know that?! I am guessing from a TV show but it really surprised me! She is really smart.

sigh.

2010-04-01T12:53:00.002-05:00

Once again it looks like we will be without respite. Our respite worker is moving out of the country kind of unexpectedly. Our last day is Apr. 19. Hopefully they can find someone else soon, but I doubt it. Bleh.

Jackson is a great helper!

2010-03-28T15:59:00.000-05:00

He helps by carrying Zoe short distances on his lap. As long as she doesn't get her head too much in his face, he is happy to help out. What a great big brother!

Jackson's appointment at low vision clinic

2010-03-24T15:38:00.002-05:00

Jackson had his annual appointment at Lighthouse. Jackson has functional vision but he is considered to be Cortically Visually Impaired (CVI) due to his brain injury so he sees a low vision optometrist there. I am very happy with the doctor there. Before we started going there Jackson was seen by a different doctor. I am not exaggerating when I say I left that first doctor's appointment in tears (this was years ago, shortly after Jackson got out of rehab) he was so negative about his vision and future prognosis. The guy had no clue how to measure Jackson's vision and no clue about how to deal with people. This doctor is wonderful with him and has lots of very neat ways to figure out how well he is seeing.

So anyway, Jackson is about the same as he was last year. He still is slightly near sided (although it may possibly be less than he was last year). If he was getting worse she would recommend getting glasses for him again but he did not tolerate wearing them too well and the improvement would be minimal so she says it's ok for him not to have them.

His visual tracking is good, but his tracking items upwards is not as good as tracking items in the rest of the field of vision.

His eyes also still turn inward and outward, meaning they are not always working together as they should be. This is called esotropia. She says he seems to be pretty good about self correcting. If he consistently had an inward turn or an outward turn a surgeon may be able to help improve it, but since they both go both ways there is really no way to surgically correct it.

She mentioned wanting to do a test called visual evoked potential. This will help get a clearer understanding of just how well Jackson is seeing. She does not think he needs it now, but probably sometime in the next few years.

His overall eye health is very good.

So a good (but very long, as always) appointment. Not so good for Lee who was hanging with the babe at home. She took only a 5 minute nap and cried for two whole hours. Poor daddy!!

Some cuteness for you

2010-03-15T11:45:00.004-05:00

Look how big and pretty she is getting!

Here is a shot of her wearing the same outfit as in a previous post. You can really see how much she has grown! Her jeans were all cuffed back then and now they are just right!

Happy girl!

Here she is driving her "car".

She loves playing in her bath tub! She will drag it out to the living room all the way from her bedroom and sit in it. We got the hat out of the $1 bin at Target...best $1 spent ever!

We gave her Jackson's old backpack to play with. He used to play with it when he was her age before he got sick. She loves it! You can see Grandpa Chuck in the background.

I have a picture of Jackson wearing the same backpack that is very similar to this one of Zoe. He was a little younger in the picture though, about 14 months to Zoe's nearly 18 months.

She loves her doll and she also has a little mouse in her hand that she was loving on. It used to be a cat toy! She runs around with it saying "mouse!"

She always likes to run around with no clothes on for a while before bed time. Last night she wanted to put on her hat and mittens. It was just too cute that I had to take a pic. But she was really tired so the camera got her all kinds of upset. Still worth it though!

History of Rock 'n' Roll

2010-03-13T12:28:00.000-06:00

Since Lee works a lot of late nights as a realtor and Zoe goes to bed pretty early, I get to hang out with Jackson alone for about an hour and a half before he goes to bed. Or sometimes an hour because he does get kind of sleepy early. I actually LOVE this time with him since Zoe is such an attention hog and it can be hard to make a good connection with him if there is a lot of commotion and noise going on. So this time is precious to me because we can be together without these distractions. He is such a sweetie, and I love seeing the way his mind works and what he likes and dislikes.

Jackson loves music more than anything else in the world. I am so thankful that he has his iPod to keep him entertained but sometimes it can be difficult to figure out what music to put on it , especially now that he is not a little kid anymore. He is outgrowing some of the music on there, and I am trying to find more age-appropriate music for him.

I recently recorded the series "History of Rock 'N' Roll" and we have been watching it together in the evenings. We have a deal that if he can tell me that he likes a song, I will write it down and then download it to his iPod. He has GREAT taste in music! He likes all sorts of stuff...Bill Haley, Little Richard, Ray Charles, Chuck Barry, Rolling Stones, Beatles, Bob Dylan, Jimmy Hendrix, James Brown. I also like seeing him try to make up his mind on if something is worthy of his iPod. I asked him if he liked a Janis Joplin song and he did not respond for a while...he was just listening and then a minute or two later he indicated he liked it. He did not want any Mamas and the Papas or Byrds or Righteous Brothers (told you he had good taste!).

Conversation with Zoe

2010-03-09T16:09:00.000-06:00

Zoe: eh eh eh eh eh eh (this is the somewhat annoying sound she makes when she wants something)

Me: What do you want, babe?

Zoe: eh eh eh eh eh (pointing at the window)

Me: Do you want to look out the window?

Zoe: Yeah!!

Me: Can you tell me with words? Can you say "window"?

Zoe: Peeeeese!!!? (We are working on saying "please".)

Me: Oh you said "please"! That is a very nice way to ask, but can you say "window"?

Zoe: Yeah!

Me: Can you say window?

Zoe: Yeah!

Me: Can you say window?

Zoe: Alright!!!

I gave up and helped her look out the window.

The truth about parenting a child with special needs

2010-03-09T12:38:00.002-06:00

The truth about parenting a child with special needs

This article pretty much hits the nail right on the head. It's short, and it's bitter, and it's exactly how I feel most of the time.

Cute things Zoe says

2010-02-23T15:59:00.000-06:00

My favorite things lately have been her exclaimations of happiness, such as "COOL!!", "OKAY!", and "ALRIGHT!!". It is hilarious to see such a little person shouting these things.

Of course, there is the ever popular "Oh man!" that she will say when she is upset...such as when I am about to change her diaper, which she hates for some reason.

And when she talks on the phone she says "hew-wo" (hello) and it comes out just like Elmer Fudd would say it. :)

Jackson Rides a Trike!

2010-02-17T11:41:00.002-06:00

I can't seem to figure out how to get the video directly on this page but you should be able to click this link and see it. I love it! Totally cute!!

Jackson's Parent Teacher Conference

2010-02-11T16:16:00.002-06:00

The school year seems to be going fairly well for him. He is getting used to his classroom teacher again (she was out a few months for maternity leave).

They are looking for ways for him to be more independent with communication, and ways he can access a switch more independently. We are still waiting on an extended trial of the PRC Eco 2 eye gaze communication device. Hopefully when we do try it out we can find some really fun and motivating activities for him to help him learn how to use it. They are also doing something interesting with helping him to be able to spell out words (even though he may not even know his alphabet yet, and he certainly wouldn't know how to spell much) but she feels it is a meaningful activity for him and he seems to be interested in it.

He gets PE/PT every day at his school, which is something that would not be happening if we stayed in Chicago...in fact, many Chicago schools do not have PE at all!!!! About 3 days a week he is in a stander doing activities during that period. The other two days they have been using his gait trainer. He likes being in his gait trainer but she has not been successful in getting him to take any steps by himself. And just this past week, they tried him on an adapted tricycle. After some considerable trial and error and a lot of assistance they were able to get him moving and he really loved it! She said his smile lit up the room! She said she would take some video next time and email it to me. I am very excited to see it.

The way her mind works...

2010-01-30T10:26:00.000-06:00

It really amazes me sometimes! Her big thing recently has been pointing to her ear when she hears something and making a question sound to ask what it is. Or sometimes she will tell me what she thinks it is; for example, pointing to her ear and saying "dog" or "car".

Yesterday she asked me what a sound was. It was a car door closing outside. When I told her that, she said "Da!" because she thought it was Lee coming home.

And this morning she did a different thing with her ear. She cupped her hand over her ear and she made a sound like static. She was hearing Jackson's white noise machine over the monitor (we turn the monitor up pretty loud so we can be sure to hear him if he makes noise) and wanted to know what it was.

Jackson's Field Trip

2010-01-23T16:38:00.001-06:00

Jackson's school went to the children's museum. Lee went with them since otherwise they would have had to hire a nurse to go with them to give him his feeds and meds during the trip. Lee said there were a couple things there he really liked but that mostly he liked it when Lee was next to him singing to him.

Here are a few pics...cute!!

Playing the drums

Making the jellyfish bubble

More percussion

What's happening with us

2010-01-20T17:39:00.005-06:00

Zoe just had a serious word explosion and now says so many new things. "Up" is a huge one and "help" is another one I hear a lot. She is so smart and knows so much!! I was changing her after she got up this morning and she heard Lee in the other room. She looked at me wanting to know what it was she heard. I said "that's Daddy". She then kissed her hand and made a throwing motion to throw it to Daddy! I said, "That is so sweet, Daddy will be tickled to hear about that". Then she started tickling herself!!

And right this minute Jackson is watching Super Why on TV. It's an episode with Santa in it. Zoe just looked at the TV and said "Ho ho ho"!

I don't think the jello thing with the meds is going to work out unfortunately. The good news is that today I got some clarification on our new insurance plan and it is not as bad as I thought it would be. There is a big deductible that has to be met by the whole family and after that, everything is covered 100%. Jackson will mostly meet the whole deductible himself (which we will be reimbursed by his settlement for) and then everything for the whole family is covered 100%. It's only been 20 days and we have nearly half the deductible met already.

Jackson is doing well for the most part. He had a big barf at school today so I had to wash his chair down when he came home. But that is pretty rare. He is going on a field trip to the children's museum Friday and Lee is going with them. Hopefully he will have fun, that kind of thing is not really his cup of tea.

He finally got a new respite worker to come and play with him once a week. She seems very nice. I was impressed that she could tell that when she holds 2 books out for him to choose and he doesn't make a choice, that means he doesn't like his choices and wants different books. I had not mentioned that to her, and it is definitely not something that everyone gets about him. So I think she will probably be a good fit for him.

Thank you Tiffany!

2010-01-14T10:07:00.003-06:00

How did we live before the internet? Seriously!!

One of my online friends (a friend who I know only online, I have never met in person, and I am not likely ever to meet in person) saw my blog post about the zantac and gave me a great tip...JELLO SHOTS!! She said make them with less water so they gel up more firmly. Make half with a dose of zantac in them and half without. Every day give her one without the medicine and one with the medicine. I had a little extra zantac left after our failed experiment and a box of jello (sugar free, not even the real stuff!) so I gave it a try.

Miss pickypants did not even want to try the first bite of jello but I did get her to eat a little and she loved it and ate the rest quickly. But the real test came after dinner when it was time for the one with the medicine in it. Not only did she eat it without any problems, she actually asked for more!!

We shall see if she continues to like it. She is kind of funny about what she will eat and sometimes decides to refuse things she loved before. I made 5 medicine doses. So if she does take all the doses, then next month we can go ahead and buy the zantac again instead of the pepcid.

The failed experiment

2010-01-12T15:29:00.001-06:00

We are on a sucky new insurance plan where the cost of rx meds count toward the VERY HIGH deductible. We are pretty broke right now and I called the doctor to ask if the was anything OTC that Zoe could take for her reflux. They said not at her age but that Zantac would be cheaper. I specifically asked for something other than zantac when Zoe was first prescribed meds since I knew that stuff tastes terrible and she is so picky and stubborn. She has been taking her pepcid very nicely but it is expensive so I said we would try the zantac.

It's been awful. She mostly won't take it, she will spit it right out. I have tried watering it down and even mixing it with chocolate syrup. There is no way to make her take it. So she has been getting crankier and crankier. Today she would not eat anything for lunch at all. She only wants to nurse all the time, even more than usual, and that is already a lot! She cries a lot and whines a lot. She gets hiccups all the time and she chokes up stuff more too.

So we have to bite the bullet and go back to the pepcid. Just another reason why insurance sucks.

My adventures in bureaucracy

2010-01-09T12:40:00.002-06:00

We have been trying to get Jackson on a medicaid waiver here in Illinois for years. A waiver is for people who make too much for medicaid but have qualifying issues so that they waive the income requirement. Even though he requires total care and has extensive medical and developmental issues, we have had absolutely no luck. Illinois is one of the very worst states (I think it is ranked 48 out of 50 or something like that) for medicaid and I can certainly see why. I know people online who have kids similar to Jackson who qualify for their state's program easily, and even some who have kids arguably much less affected than Jackson qualify without problems or even much of a wait. Even some states that have a waiting list have loopholes to get the more severe kids on. Anyway, the way it works here (if you don't qualify for the medically fragile/technology dependent waiver) is that you fill out a PUNS survey (Prioritization of Unmet Needs) and complete things like a neuropsych eval and letters from teachers, doctors, therapists, etc. Then (even though our PUNS said we needed help immediately) the PUNS goes into a pool. As funding becomes available, PUNS are randomly drawn from the pool. There is no guarantee that his PUNS will ever be drawn and only if it was drawn can he then apply for the waiver, which he may or may not qualify for. We work with an agency called Community Alternatives Unlimited to get this far in the process. One thing that was killing me was that our caseworker kept saying that he would have a much better chance of getting the waiver if he had acting-out behaviors such as biting, hitting, throwing things, etc. Hello!!!!!! If he could actually physically do any of these things we may not even be applying for the freaking waiver in the first place!!! DUH!

So anyway, I am pretty sure he will never ever get this waiver. Whatever. But every year we have to update our PUNS so stay in the pool so I do. And every year the caseworker sends a letter with our paperwork that encourages me to contact the Department of Rehabilitation Services to inquire about In-Home Support Services and Respite Services. So just for kicks this year I actually tried.

First I called the number he gave me on the letter. I got a message saying that they are very busy with phone calls and to try calling during "non-peak" hours. Non-peak hours are apparently all day Thursday and Friday and also daily from 8-9am. Then they said "thank you for calling" and hung up on me. Ok. So I try back the next day at 8:30. They played me the same message (even though it was non-peak hours) and again hung up on me. Grrrr. I called back and just keep pushing 0 until I got a different thing. It said that 17 callers were in front of me and I had an approximate wait time of 4 minutes. That did not sound quite right to me but I stayed on hold just to see what would happen. 4 minutes came and went. 15 minutes. 30 minutes. 45 minutes. Then, I actually got a person!

So I told her what I was calling for, and she said "oh, I can't help you with that." Ha ha. She did take my address and look up the number that I should call. She gave me a number to the "Skokie" Rehabilitation Office, which had a 773 area code so it was actually in Chicago. She told me that that was a wonderful office that had really great people working there.

Ok. So I give them a call. Gotta say, the guy who answered the phone did not sound wonderful nor did he seem like he was great or even very happy that I was calling. He started taking our info but when I got to our address, he said that "this office does not service that area." Ha ha. So he is looking up what office I am actually supposed to call. He told me I needed to call the Waukegan office. Well, I don't know exactly where Waukegan is but I know it sounds far away and it is certainly farther than his office. But the number had our same area code so I guess it could be possibly possible that he was giving me correct info.

I call the number. They ask me if I am in Lake county. Uhhhhh...no. Not off to a good start. They said they would get someone to call me back. Good thing I wasn't holding my breath since I am still waiting and it's been nearly 2 weeks. Meanwhile, while they were trying to get rid of me, I was on the DRS website looking up for myself which office I am supposed to call and sure enough, it was the first one. Ha ha.

I am planning to try again but surprisingly, I just haven't gotten my motivation back up yet. Sigh.

Christmas 2009

2009-12-29T13:37:00.004-06:00

It was nice. My mom, her husband, and my brother came into town to spend the holiday with us. Jackson was really sleepy Christmas morning so we only opened some of his presents before he fell asleep and then saved the rest for later on when he was feeling more awake. His big present was a twin sized futon (that he is lying on in these pics) so he can be off the floor but still lie flat. He also got a new ipod (his was very old and wouldn't hold a charge) that has video capabilities. He got a computer game and some clothes, a little toy dinosaur (that I can switch-adapt when I find my soldering kit), and a lot of books. You can see he could barely keep his eyes open in this last picture. That's when we decided to save the rest of his presents for later.

Zoe was so funny. She got the first thing out of her stocking ( a big flower) and she was happy as could be with it, then wandered off to play not realizing there was a lot more. She got a rocking Rody horse, a Tinkerbell chair, a play tent, some clothes, an aquadoodle, and a big bead maze toy. She was completely overstimulated and also happened to be getting her molars in so she did have a few melt-downs, but overall she enjoyed all the attention.

The bead maze: It was to be Jackson's present 5 years ago. It was ordered before he got sick and it came while he was in the hospital. He was pretty much unconcious during Christmas that year and it quickly became apparent that he was not going to be playing with it. We just put it away in the basement still in its original packaging where it remained until this year. I'm glad that we finally have a use for it but it is a bit bittersweet as I am sure you can imagine.

Anyway, I thought I'd show off this cute picture of Jackson (for Christmas cards) since he was sleeping for the pics on Christmas day.

Also, I apologize for the way the pics are arranged on the page...blogger changed something a while back and I am finding it really hard to get things right with the layout anymore. :(

Boo, Blogger, boo!!! :(