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!

Shriners appointment today + a cute picture

Jackson saw his orthopedic surgeon at Shriners today. His spine looks the same which is great. His left hip looks the same which is great. His right hip looks worse, but the doctor says it could have just been the way it looked on that one x-ray. And even if it is worse, it is not something that we need to do anything about at this time, just a wait and see type of thing. We go back in 8 months or so for more x-rays.

And here is a very cute picture of my kids. Zoe was wearing mittens because it was pretty cold that day and her little bony fingers get so cold quickly. Isn't it adorable how they are both touching each others head!?

For the first time...

I wish we had a suction machine for Jackson. We were supposed to have gotten one before he was discharged from the hospital but it got overlooked and honestly 99.99% of the time he does not need one anyway.

He was sick last week and we kept him out of school a couple days which I hate to do since he loves it so much. He is feeling better now, but he has lingering mucous which he keeps coughing up...and then swallowing back down, yuck! Besides just the breathing issues this causes, it makes him way more likely to vomit which has its own set of problems. It's heartbreaking to see him trying to clear his throat when it really gets bad. Yesterday I had a choking 5 year old on one side of me and a wailing 2.5 week old on the other side. Yikes!!

He has an especially rough time in the mornings when he first wakes up. It makes it really hard to decide if he is ok to go to school or not since he only has an hour or so from the time we get him up to the time we go wait for the bus. I almost kept him home today, but I am glad I didn't because he did fine once he got done choking up the AM phlegm.

The school PT called today and said that she did not want to stand him up because of all the trouble he has been having. I think that was the first time I actually agreed with her on something. He definitely hasn't been standing at home, partially because he has been gaggier than normal and partially because I am technically not supposed to be lifting him until I get cleared by the doctor (and our loaner lift doesn't work with our stander).

A first...me and two kids running errands!

We did pretty well, I was impressed with myself. Just getting out of the house with 2 non mobile kids is tricky. I first put Zoe in her car seat and put her by the front door. Then I got Jackson in his chair and wheeled him out the back door (where the ramp is) and around to the front door, where I parked him and went in to grab Zoe. I took Zoe to the car and got her in and then came back for Jackson.

First we went to the pet store to get an aquarium filter. (We are downsizing our aquarium to make more room.) I brought our Beco Butterfly Baby carrier and that worked out really well, although I also had the New Native Sling (old faithful!) in the diaper bag just in case. Otherwise I would be stuck pulling a cart with the baby seat in it while pushing Jackson's wheelchair at the same time and have to worry about watching both kids at once...this way one is always stuck to me which is less to worry about.

Then we went to the baby store to get a few more warm one-piece sleepers for Zoe and to look at baby swings because Jackson's old swing doesn't quite work right after all this time in storage. (Didn't buy one though, I didn't like what they had.) It went a little less smoothly than the pet store but it was still fine. Luckily the weather was nice, if it had been raining it would have been hard.

By the time we got home I had 2 sleeping kids. Yay!

What I really want is a way to snap Zoe's car seat onto Jackson's wheelchair somehow. If there are any genius fabricators out there who would like to invent this for us, we would be really grateful! ; )

More pics...by popular demand!

I have had many requests for more pics, so here are some...

First, Zoe has the most amazing toes. They are very distinctive and very long!


Then Lee had Jackson on his lap and then wanted to hold Zoe too. Covered with kids, he got too hot very quickly so it only lasted a minute or so...but you can tell he was enjoying it!


I think Jackson is warming up to Zoe. They were hanging out and I looked over and Jackson was reaching for her hand.


Then I asked him if he liked his sister and he gave me this smile. He wasn't feeling very well yesterday either so for him to smile at all right at the moment was huge.


Here is a family picture my mom took as she was getting ready to back home.


And Dizzy has been so funny with the baby. He just loves her. When she cries, he gets very concerned and he follows the baby around as we carry her hoping to sneak a sniff or a lick.

Meeting his little sis for the first time

I don't think Jackson knew quite what to make of her, but they sure are sweet together!






Zoe is doing really well. She is sleeping well and eating really well. We got discharged from the hospital at just over 24 hours from her birth. I so wanted to get back home and see my guy, and I felt amazingly good (my back hurts but otherwise I feel great). Zoe gained 3 oz according to the pediatrician's scale at her first check up yesterday, which is not surprising to me since she eats so much!

I had to go out today and buy her smaller clothes, she is such a little peanut. We had been told that she was going to be a big baby like Jackson was. But after I got diagnosed with gestational diabetes, I was very careful with my diet and also had to take insulin to control it. I guess it worked since she came out so much smaller than expected.

My mom has been here helping out with watching one kid or another, making valences for the baby's room, and just being a wonderful granny. We could definitely not have made this work without her.

Daddy is totally smitten!

Zoe is here!

Wow, she is just perfect!!! She arrived at 4:53 pm. She was 7lbs 5oz (even smaller than they estimated) and an amazing 21 inches! She has a fuzzy head of blonde hair and is just gorgeous!

She took a while to come down but once she got ready I was able to push her out in 3 contractions. With Jackson I was pushing for about 2.5 hours so that is a huge improvement.

She is the hungriest baby I have ever seen, and is nursing just great!

The GAL finally called Thursday

and our court date is on Monday. Same day as baby-day, but we don't have to be there at least. Our lawyer says that there are some things that the GAL will agree on with no problem, some things he needs more info on and some things he will agree on with stipulations.

New title? New kid!

We are about to have a new addition to our family. Her name is Zoe and she will be born in one week (or less)! I figured since Jackson has his very own website all to himself, he won't mind sharing his daily updates page with his little sister.

We have a scheduled induction for next Monday the 22nd. We will make announcements here first so keep checking back! Don't change your bookmark though, we are still here at http://www.jacksonsdailyupdates.blogspot.com/

I am very upset about this

Last Tuesday was the first day of school. That night I noticed he was developing bruises on his arms that look like fingerprints. It looks like someone does not know how to lift him properly and is not being very careful with him.

I noticed these same type of bruises from time to time during last year (but never this bad!), but I never knew if it was me (possible I guess though I really did not think it was me), or if he was getting them at his private therapy, or if it happened at school. Since school ended for the summer I have not seen any bruises even though I still lift him and he still goes to therapy. But for the first day of school they were back, and much worse than normal.

Yes, leave it to my happy guy to smile as I am taking pics of his bruises...

So I wrote a note in his notebook for his teacher and emailed the principal. The principal said that he saw the bruises and assured me it would not happen again. He said that all the people who work in the classroom have been trained in the proper way to lift, but they obviously need to have some more training. I took his word that the problem will be addressed and will not happen again.

BUT...this morning I noticed more bruises in the same exact place!!! Maybe there is someone who only sees him on Tuesdays since both incidents happened on Tuesday. But whatever, it should not be happening at all! It is very upsetting!!! What is wrong with these people!?

.

Lee has a call in to the principal but he was not in today.

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You can see the faded bruises behind the new ones.

Oh my!!!

So Jackson's other bottom front tooth has been loose for a long time. I checked it this morning and decided it wasn't quite ready, but that I would pull it this evening. When he came home from school, I give him feeds as he watches television. I heard him grinding his teeth, which he always does, but this time is was much louder than normal so I decided to do another tooth check.

It was GONE!!!!!

I was trying to open his mouth to see if it was still there or if he had swallowed it but he wouldn't cooperate. I thought I could see it way back on the side but I wasn't sure and I am certainly not stupid enough to put my finger in there. So I took him out of his chair and laid him on his side and grabbed a nuk brush to see if I could get it out. Luckily, I was able to get it!! Phew!!

I will be pulling them earlier from now on I think!

Court yesterday

So we went to court yesterday to ask the judge permission to spend Jackson's settlement money on various items.

I guess it could have been worse. Basically the judge did not say "no" to anything but he did not say "yes" to much either. What he did say was that he was giving us a certain amount for the nursing (we asked for 4 months worth but I doubt I will use it all) and to continue the temporary budget we had set up last April. He also gave permission to purchase the lift and the bath chair....yay!!

BUT, he is appointing a guardian ad litem to come and visit us and make recommendations on the rest of the stuff we asked for. So we should have someone set up by next week and we have a return court date for the week of Sept 22...luckily we do not have to attend that hearing since that will be baby-time.

Lee is very upset that we did not get results since we have been waiting so long, and now we have to wait some more.

We ran into our lawyer friend while we were walking out of the courtroom, she knew we were going to be there (but not which judge) and was hoping she would see us. She said she knows most of the GALs and she does not think it is a bad thing that one was appointed, that it will make it easier for the judge to approve more stuff with out worrying that we (Lee and I) are trying to take advantage of Jackson's money. So that is good at least.

And I have to say it is very nice to work with a lawyer who is prepared for court and not assembling exhibits willy-nilly out in the hallway. So glad we fired the last one!

Home from vacation

I would say while it was mostly fun, Jackson would still prefer to stay home...he is not a good traveler.

We started out in Wisconsin Dells. We had gone a couple years ago and it is not too far a drive. It is so beautiful there! We did a little swimming but it was too cold for the kid in the pool.

We went on a boat tour of the upper dells...too much walking for my ouchy foot though.

This dog jumps the cliff!!

We went to the deer park again, but it was too crowded.

Then we went to Minneapolis. We of course had to go to Mall of America, and I think that is where J had the most fun...go figure. The New Kids on the Block were scheduled to play on the day we went there. I would have stuck around to get a few pics but they did not show up on time and we did not feel like waiting around.

He did his first Build a Bear and made Ozzie the Monkey. He just LOVES his Ozzie. He picked out the outfit too...it cracks me up because Ozzie wears soccer cleats!

He rode the carousel with Daddy but none of the other rides would work. Bummer because we had some free ride tickets.

Yes, Ozzie rode with him the rest of the trip.

We went to the zoo, but it was too hot and the weather forecaster told lies so we only stayed for the butterfly house. Jackson was already grumpy though. Here is a butterfly on his grumpy head.

On the way back home (long drive!!) we wanted to stop and let him get out of his chair. We stopped at a state park in Wisconsin on the way back but the mosquitoes there were unbelievable so we only stayed 5 minutes (including a diaper change where one of us changed and the other guarded his butt from the bugs!!!) and we had to retreat to the car. YIKES!!! I have never seen anything like it!! So we just drove til we got home. Jackson was so happy to be home.