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!?

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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.