Our new spaceship : )

We picked up our new and totally awesome van yesterday. I made Lee drive it home so I could play with all the toys and buttons. I have never seen a car with so much stuff! It's like riding in a spaceship!

Right now I am watching the DVD that comes with it and I am just amazed by all the crazy stuff it can do. Jackson seems to like it and I bet he will like it even better when he realizes he can watch a DVD on our long drives to Milwaukee.

It is a Honda Odyssey with a VMI northstar conversion. I will posts some picture later.

Dancing Queen

One of my friends suggested I put Zoe in a jumper to work off some of her energy in the hope she would nap better. We had a jumper for Jackson but apparently it does not have all the bells and whistles, and it was kind of difficult to get the baby in and out. So we found a major bargain on craigslist only 6 blocks from our house...woohoo! We got it for only $20! Lee picked it up yesterday and Zoe seems to really like it.

She doesn't really jump in it so much as dance with her arms flailing around. She does the exact same dance while getting her diaper changed...kind of like an enthusiastic tap dance.


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Jackson's new AFOs

He picked out the strap design and color all by himself. I was surprised he went for the camouflage! They are the same 2 part design we had last time. That works well for him.

Unfortunately, we are sending them back to be modified. They were ordered without exterior heel stabilizer foam, which pretty much make them unusable without shoes. Well, we use them all the time in his stander without shoes so it needs to be added. His last pair had it so I am not really sure why this pair did not since they were both ordered by the same person.

Anyway, here they are...




And here is the "see how much I've grown" shot with all of his AFOs (except for his very first pair, I think I threw them out). He has 2 red pairs because those were not made right so they made another set.


And this will be the last shot of all those AFOs all lined up...I am donating them to Orthoses For Others along with his old TLSOs. I have to admit feeling a little sad to give them away, but they are not doing us any good, they are just taking up space. Better to give them to someone who can make good use of them.

A moment of peace...

Jackson has the day off of school for Martin Luther King Jr. day. I went to eat some lunch and when I came back this is what I found...

Kid #1


Kid #2


It was short-lived though...they are both awake now.

Pump problems!

Jackson's enteral (tube feeding) pump broke today. It was fine yesterday but today would not run without alarming and showing an error on the screen. Luckily he is not on continuous feeds anymore so we are able to give him his food and water by syringe when necessary. I called the home health company and they sent a new one out. I got his dinner time feeding all ready to go, put it into the feeding pump bag, and put the bag into the new pump. As soon as I closed the pump door it started alarming and showing a different error. Shutting it off and turning it back on did not help.

I called again and the lady I was talking to kept saying it had to be something I was doing since it was a brand new pump. Trust me, I have used this pump for years now and I know how it works, it was NOT me...plus all I did was close the door and it started alarming. She said she would check with the nurse and call me back. I guess she called the pump manufacturer and they told her I needed a new pump because they are coming back again tonight with another new pump. Hopefully the new new one will actually work.

My shy girl

She gets very shy when people look at her and she will often smile and then either hide her eyes or turn away. Here she is hiding from herself in the mirror!



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Househunting

We saw 7 properties yesterday...and none of them were good for our needs. There were two worth mentioning though.

The first one was a really nice stone American four-square. Unfortunately, it was in a terrible state of disrepair. Much too bad to consider seriously. But in its heyday it was a beautiful house. It makes me sad that it was in such bad condition. I keep thinking about it, but it's really too much work...who knows how much it would cost to fix it up and it would take forever.

The second one was a Spanish Colonial. In the photos we saw beforehand the rooms looked HUGE and it seemed like it was in super nice condition. So even though there were no bedrooms on the first floor, it was possible that we could divide up a couple of those giant spaces and make a bedroom for Jackson. When we got into the place, we couldn't believe our eyes! The huge rooms were actually very small... that must have been one heck of a photographer! Plus it was way too expensive and the agent was smarmy. Bleck.

Anyway, 7 houses is too much to look at with a baby all at once so we won't be doing that again. I will send my agent (Lee) to scout out the houses beforehand and then I will only get to see the good stuff.

Our Christmas

We have been really busy around here, which is why there has been no update recently. Everyone is fine though.

We had a nice Christmas, just the 4 of us on Christmas day. Then the next day my mom and her husband came to visit for a little bit. Here are some cute pics:

Jackson with his new Chicago Bears hat:


Checking out the cool dinosaur tattoos in his stocking:


Zoe with one of her presents. This pic does a good job of showing how blond she is:


And our little cheerleader on game day. Unfortunately the Bears blew it bigtime!



In other news, we are going out looking at several properties this coming week. I don't have great hopes for any of them for various reasons but I guess you never know until you see a place in person.

I don't think I ever updated about what the new palliative doctor decided to do as far as testing. It was a big fiasco trying to get him to get back to us but he finally did after nearly a month. Anyway, Jackson is going to have several tests in early February that hopefully will give us some clues on how to treat his dysautonomia. He will be having an EMG and an NCV which measure how the muscles and the nerves in his body are working and he will also have a head CT to compare to the ones he has had in the past. I looked on the orders for the tests and the doctor had written "progressive dysautonomia" as the diagnosis. I had not thought of his dysautonomia as progressive until recently but I suppose it makes sense thinking back on things. They hope to figure out if the dysautonomia is secondary to his brain injury (which I am thinking it most likely is) or if it is a primary dysautonomia.

Zoe Update

Well she is just about 3 months old now if you can believe it. She is quite the charmer when she wants to be. And quite the opposite sometimes too, definitely not the easy-going baby that Jackson was. She has a very strong personality!

We co-sleep with her and she sleeps really good that way, all snuggled up. She also likes to sleep a lot in the mornings in her swing.

We have been using cloth diapers most of the time with her. They are so incredibly cute on her, I love them!

She has a couple of toys that she likes to play with. One is a musical bee that was Jackson's that he really loved too. The second one has a lot of buttons to push...she is surprising good at pushing all the buttons, but she gets a little overstimulated if she plays with it for more than a few minutes.

She is also quite fascinated with looking at her hand, especially when it is balled up into a fist. We call it her fist of death.

She still very much enjoys her bath, and doesn't even cry when I take her out anymore.

She has had some very cranky days recently. Now she has started to drool a lot. And also has been shoving her fingers into her mouth. I am guessing she is teething. Jackson was an early teether too so it would not surprise me too much.

Here are some recent pictures:

Zoe and her daddy


Examining her fist of death


This morning after her bath

I'm trying to have a good attitude about this

So we had a big important court date this week. We were asking to use funds from Jackson's settlement to purchase a house in a school district that has a wonderful public school for kids like him that goes all the way up to age 21. We ran around looking at houses beforehand and we found a really nice one that was great for Jackson but also the rest of the family. We were very stressed that something would go wrong as usual and the judge would rule against us even though this was the GAL's idea in the first place.

Well, things went great in court. They gave us everything we asked for. So what's the problem? The house is no longer available!!!! We put in a backup offer but at this point I am not holding my breath.

I am trying to take the attitude that there will be a better house. But we have literally seen every property in this suburb that was possibly good for Jackson's needs that was affordable, and we had narrowed it down to that one house which is now gone. There are lots of houses that are nice and affordable that just wouldn't work for Jackson, and there are probably many houses that would be great for Jackson but that are out of our price range. Lee says most likely there will be nothing else on the market until Spring so I guess we will just have to be patient. It's really hard though.

Taking steps...

Jackson got to try out the KidWalk again in therapy this week. He does so good with it! He can take steps with his right leg but his left leg can't quite get going yet. Check it out!!

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Sorry for the angle of the video, it is a narrow hallway. (And sorry Alicia...you know for what!)

Here's what he looks like from the front.

4 years ago

Just wanted to mention this sad anniversary. Four years ago yesterday was when Jackson got sick from his vaccine reaction. It seems like a million years ago and at the same time it seems like it was just yesterday. Our lives are so different now. Sometimes I try to imagine what we would all be doing now if none of this ever happened. But not too often, it's just too sad to think of all the things Jackson is missing out on and all the things Lee and I are missing out on.

I will never hear my son say "I love you". He will never be able to go run and play with the other kids in the neighborhood or have his first kiss or have kids of his own. Lee will never get to teach him how to ride a bike or drive a car...and on and on.

I doubt he even remembers what it was like to be able to walk and talk and dance and eat. He has lived most of his life this way. I often remember back to this one day shortly before he got sick. I picked him up from daycare and then we went to a little playground near our house. It was a cold and cloudy fall day. No one else was out in the park, it was just me and my little boy. It was so cold that day and his nose was running all over his face. I remember thinking "it's crazy to be out here, why am I doing this?" But he was running and playing and having a good time. I'm really glad that we had that time together even though it didn't really make sense at the time.

Is this not the best picture ever?

So I was trying to get a good pic for our Christmas cards this year. I figured if I did not get a good one that day I would try again the next day. But it turned out I got this really great picture with both kids smiling!! Jackson's smile is so beautiful!!

TMI maybe...

So you can skip this post if you are easily grossed out! ;-)

Monday when Jackson came home from school, I fed him as normal and then took him out of his chair and changed his diaper. As I was changing him, I noticed a huge lump in his stomach to the right of his belly button. I mean the thing was HUGE! And it was hard. And it seemed like it was a little sensitive when I pressed on it, but didn't really seem painful.

So my friends were thinking it could be a hernia and that is also what the doctor's office said when I called them. So I made an appointment to take him in, but unfortunately they could not see him until Tuesday afternoon which is his therapy time so I cancelled therapy because at the time I really wanted him to get looked at.

Well, it turned out that he had just been backed up with poo! He had 3 good size poops that evening and his stomach was back to normal by bedtime. He has been backed up before, but I have never seen a lump like that before.

I tried to get therapy rescheduled but I couldn't get in touch with the therapist in time. Oh well.

Better nights

Thankfully it was just that one day and night that Zoe was so cranky. Things are back to normal crankiness now!

Thanksgiving was nice. We have Lee's parents in town until Monday. They were so happy to meet their granddaughter for the first time.

Jackson was a super-trooper at Thanksgiving dinner. We asked him if he wanted to sit with us at the table for Thanksgiving dinner (sitting up is not the most comfortable position for him and he eats nothing orally so we leave it up to him) and he said yes. He was very interested in watching us eat so we asked him if he wanted to smell some of the food. Sometimes he says yes when we ask and sometimes not but today he said yes. As he was smelling he opened his mouth so we asked him if he wanted to taste a few things and he did! That hardly ever happens. So we gave him tiny tastes of cranberry, green beans and potatos. He did not like it at all, as expected. But it was really cool that he wanted to try.