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!?

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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.

Back home after VEEG

Jackson had another Video EEG (long term seizure monitoring) this week. We only had to stay over one night this time, although the doctor said we could stay longer if we wanted to to try to get some longer episodes. Well, no thanks doc...I think 24 hours is plenty and there is no guarantee that we will see anything anyway.

So they did catch seizure activity again this time. The good news is it was less frequent than the last time and less (I forget the exact word he used) organized? than it was last time. (Last time he was having about 40 a day!) A big cluster of seizures started around 6am, which happened to be the time that he was woken up by someone taking his blood for labs...poor kid, what a way to wake up! Also, like last time, the seizures were centered in the left frontal lobe. So he is going up on his lamictal again, and hopefully things will improve even more.

One interesting thing that happened is that we were referred to the palliative care clinic by the neurology nurse practitioner. I was surprised about that but they do a lot of care coordination for complex special needs kids there, not just end of life issues. I met the doctor and he is really a lovely man. It was kind of funny because people kept asking me "are you ok with this?" but it isn't like anything with Jackson has changed. And if someone can make my life easier I am all for it.

We are leaving on a vacation on Tuesday. We are going to Minneapolis with stops both ways in Wisconsin so we don't have to drive too far in one day. Hopefully Jackson (and all of us) will have a good time. He was not too impressed with the trip we took last summer.

This is our second week of respite

and I think it is going to work out really well. Our respite worker is named Kerry and she comes every Monday from 2-7. I have been hanging out here with them (but staying in another room) because I know there is a lot to learn when taking care of a kid like Jackson, and she has never done tube feeds before either. I think next week I will be taking my husband to a matinee movie though. She seems like she has a lot of common sense and she asks questions when she is not sure about stuff which is good. I feel like she has a good rapport with Jackson and he certainly enjoys all the attention!

We had some excitement during therapy yesterday

Jackson's button fell out!!

I noticed he had some wetness on his tummy but I thought it was just drool (he drools a lot in PT). A little later I noticed his shirt was wet and brownish...well then I thought the button was just open and leaking so I lifted up his shirt and the button fell right out! His PT and OT were quite shocked to see that!!! So was I but not as much as they were.

The balloon was intact but low, and it was way past time for me to change it out anyway. I took his bib off and put it over the stoma because it was leaking a lot and told his OT to hold it there while I ran to grab the bag on his chair in the other room. Luckily I carry an extra button, syringe, and lube in there. I changed it out really fast without any problems. Also, luckily I have a full change of clothes in the bag too as his whole outfit was rather pukey smelling.

Guess who visited our house last night!

The tooth fairy!! Yes, Jackson finally lost his first tooth that had been loose for months. I noticed it was VERY loose and he had been wiggling it with his tongue. I asked him if he wanted me to pull it out for him, and he answered yes. I was really nervous, but it came right out with one little pull.

Since it is his bottom tooth you can't see it unless you pull down his lip a little bit.



He is very proud! We have been hyping it up since it has been loose for so long.




The tooth fairy brought him money since he really has never handled or looked closely at money before. He got one of each: paper dollar, dollar coin, quarter, dime, nickle, and a penny. Then I helped him put it in his piggy bank.
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In other news....we are finally going to be getting a little bit of respite! We had been waiting for a while on some one to fill our hours. We were originally told we were getting some very tiny amount of hours, I think she said it was 60 hours per year. When she called yesterday she said she had someone who wanted to work Mondays from 2-8pm. She said the hour limit was going to be waived. She is going to set up a meeting for sometime next week. Hopefully she will be reliable and good with Jackson. It will be nice to have someone to interact and play with him and just pay attention to him for a few hours.

Long time no update

Jackson was pretty sick with a virus not this last week but the week before. He was home from school from Tuesday on. He had a high fever, tons of vomiting, and just felt terrible in general. We were planning to go out for our anniversary the 25th, but were not able to because Jackson just felt too bad.

This week he is doing a lot better and he went to school all week. He is still having some GI issues beyond the ordinary though. It seems to slowly be getting better though.


We took him to fireworks for the first time this year. He has never been able to stay up that late before. I was not sure if he would even be able to see them (cortical vision impairment due to brain injury). But we thought we would give it a try. He looked really sleepy and I thought he might not be able to stay awake, but once the fireworks started he perked right up. He could at least see some of it and I think he really liked it. When a particularly exciting part of the show happened he made some appropriate appreciative noises and he smiled through a lot of it.

Test drove a van today

We were checking out new vans getting ready to go to court and ask permission to buy one. It will be better if we have figures prepared including what we can get for a trade in on our current van. So the guy we spoke to said he thinks the Honda Odyssey is the best choice for us. We definitely need something a little roomier than what we have now (Chrysler Town and Country) with Jackson's chair being so large and in tilt all the time. I was originally thinking about a full size van but with gas the way it is now that is just not practical. Of the other 2 vans we were thinking of (Toyota and Honda) he said the Toyota is actually less room than what we have now in the middle. The Honda has quite a bit more length in the center (although not as much as I'd like) and some nicer features (like the middle windows roll down so the poor kid can get some air!). I drove it and it was nice so we are having them work up some numbers for us. We are also going to the competing mobility van place next week to get some numbers from them.

Hopefully the judge will just let us trade in for the new van outright with no problems. The county courts seem a little more reasonable than the federal anyway.