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!!

Photo Sharing - Video Sharing - Photo Printing

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.

What is going on?

All yesterday and last night and part of this morning Zoe was super cranky. Not wanting to sleep and not wanting to eat either. In fact, she would throw a fit every time she was offered the breast. Usually she sleeps pretty well at night but last night we were up with her many times. We even tried giving her formula today in hopes that she would take that, but of course she wouldn't. (We have been trying and trying to get her to take a bottle with expressed breast milk but she only likes it straight from mom.)

Thankfully, she has slept most of the day today and she is nursing a bit better. I'm keeping my fingers crossed for a better night too.

Lookie what we finally got!

After nearly 7 months Jackson's fancy new lift was delivered today!! It is so NICE!!!!! And so much smaller and lighter than what we were using before.

Look how cute and small it is!


I think I can hook it up better next time so his head doesn't flop around so much,


He likes it!


Side view

I'm so proud of him!

We had asked our PT for a trial of a new gait trainer that came out called the KidWalk. When we got to therapy today, it was there waiting for him. I really like it!

First the therapists tried him in it with his TLSO and knee immobilizers. It was the smaller size Kidwalk and the thing that goes around his waist would not fit around his TLSO. So they took off his TLSO and put him in it. He seemed really comfortable in it, which is huge for him. He wasn't even drooly or bubbly and he was up for most of an hour.

I liked that it can lean backwards a little bit, that is what Jackson needs. Once they got him in it (which is a bit tricky) they took off his knee immobilizers. He was able to take small steps with his right foot! He was not able to get that left one moving though. But for his first time in it, I thought it was great. I could tell he was trying very hard too. I was proud of him!

I took a couple pics with my phone. If I knew they were going to be doing that today I would have brought a real camera. Hopefully it will still be there next week.

This was as they were still trying to get it adjusted for him.

Jackson's appointments Friday

First we saw dental. Jackson's teeth look really good despite all the grinding he does. She said because he is 100% tube fed he is at lower risk for cavities but higher risk for tartar. No cavities that she can see and even the tartar was not too bad. He has 4 loose teeth!!! I only knew about 2 of them. And his 6 year molars are coming in. She didn't scrape his teeth too much since he is about to lose so many teeth anyway. She said we do a great job with his teeth.

As for the grinding, she said it's really common in kids with CP. She said that she was recommending not doing anything about it at this time even though they are really ground down. The nerves of the teeth move down as the grinding goes farther down, kind of protecting themselves. And he would not be able to grind fast enough to get to the nerve. She could make a guard for him to wear but she fears it will be a hazard for aspiration of saliva since his swallow is not the best. I may ask for one anyway next time though. I really don't want his adult teeth all ground down like his baby teeth are.

Then we went to see palliative. He was really interested in the dysautonomia symptoms and had us describe them in detail. No one has ever really wanted to do anything about it before, so this is very exciting for me. He is going to consult with a neurologist who specializes in this. (Tried to page her but she wasn't answering.) So he is going to call us after he talks with her and also maybe another adult neuro too. He also said he might do a holter monitor to see what his heart is doing. Hopefully this guy will be able to help Jackson's GI pain as well as some of the other yucky stuff he has going on. Keep your finger crossed!

We travel to Milwaukee for most of his specialists, he just gets better care there. Usually it's just me and Jackson. I tried to get Lee to stay with Zoe but she refuses to take a bottle. So we all went together because both kids with me alone is too much. Zoe did well until the end of the ride home...man can that kid wail!!

Update on Zoe and halloween pics

Zoe is geting HUGE! She is mellowing out somewhat, but she is still a pretty fussy girl. I think she has a lot of gas causing her discomfort sometimes, poor thing. She does not like to lie down flat, she much prefers to be propped up or be upright in a carrier. She loves taking a warm bath, it's an easy way to calm her down. Unfortunately she does not like to get out of the bath so she will usually start crying then. She does not sleep enough during the day and she will only sleep at night if she is with Mom. Her head control is pretty amazing for 6 weeks. And she is smiling more and more, it is so sweet! Here is one of her early smiles caught on film.


For halloween, Jackson wanted to be a fire fighter this year. His hat wasn't quite working out on his costume because of the way his wheelchair headrest is but we did our best to modify the hat so it sort of stayed on his head.

Waiting for the bus




Getting his face painted at school. He looks totally thrilled, don't you think? We put his jacket on backwards (his choice) so we didn't have to lift him up out of his chair.


Zoe did not have a costume, but our friends gave her a very cool halloween outfit to wear.

Letter from the principal

The bruises are back!

The bruises on Jackson's arms were back this week, if you can believe that! Lee called the principal again. He called back and said that the PT thinks the bruises have been matching up to the days where she is standing him.

I spoke with her and asked her about how she is standing him (ie: what stander is she using) and she says she was just putting his braces (headmaster, AFOs, and TLSO)and just holding him up by herself to stand. This lady is pretty old and not in the best shape...why would she even think that she would be able to do this with a kid his size and with his complete lack of tone?! I certainly would never think to try this myself, he is just too big! Even his private therapists (who are young and in great shape) do OT/PT co-treats because he is too big and too floppy for only one person to move around and hold up alone. DUH!

Anyway, I told her not to do that anymore and the principal said that she would have help when she is working with him from now on. It makes me really mad that she is supposedly trained on the proper way to handle disabled children, and that this happened on 3 separate occasions before she figured out that it was her causing his injuries. Lee said he would like to go grab her by the arms hard enough to leave big bruises 3 different times so she can see how it feels...I totally agree.

Lee asked our lawyer friend about what we should do (this was before they figured out it was the PT) and she said we should make a police report. She also called the ombudsman to report it and they gave her the number for the area one office. She called the area one office and they suggested we speak to the principal about it. Ya think?! I guess the head of area one will call her back on it.

Wow!!!

Jackson was really sleepy when he got off the bus from school this afternoon. The baby was crying so I was trying to get his jacket off as I was holding her. It wasn't working so I set Zoe down on his lap (still crying) so I could pull off his jacket sleeves. As his arm came out of his sleeve he used that momentum to get his arm over to the center and he wrapped his arm right around her in a hug! It was really amazing to see, it isn't something he would normally be able to do. I so wish I could have taken a picture, I could hardly believe it.

Of course Zoe was not so impressed. All she wanted was milk!