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.