Pinkest birthday ever!

Zoe's birthday is coming up and I thought I would share the gifts we are getting her. They are just so CUTE!!

First is her swing since she liked swinging in the park so much. She can use it indoors as well as outdoors.

Then I wanted to get her a doll because all she has is Jackson's old doll which is a boy doll. I love this one with the pink hair.

And last, baby needed a new pair of shoes. These look like they will be nice for fall and winter. And they will match both red clothing and pink so they are perfect!

I did not set out to get all pink presents, but it does make me chuckle!

Enjoying our new neighborhood and town!

Last weekend our neighbors all got together and showed a movie outside on a gigantic screen across the street. It was so cool! Jackson and Lee and I went. They showed Chicken Run. I put Zoe to bed and brought the monitor out and luckily it could still receive the signal across the street. Jackson is not much of a movie guy so he fell asleep pretty quickly but woke up in the middle.

Then on Labor day we went to check out a local wheelchair accessible playground and brought along a picnic lunch. Jackson doesn't eat but he loves going on picnics for some reason. He has a song called "picnic" on his ipod and we sing it when we go on picnics so that might be why. Anyway, it was fun. They had a full support swing that Jackson was able to use. Next time we will bring his head support collar and he will be able to swing higher. As it was we still had to hold his head up, but he still enjoyed it. Zoe also took her fist swing ride and she loved it!

I took some pics with my phone, but unfortunately as you can see it takes horrible quality pictures.

Yesterday was our block party, which was completely AMAZING! Lee had a traffic safety school class he had to go to so he missed a good portion of it. But Zoe and Jackson and I spent most of the day outside. Jackson had his music pillow and was very comfortable in the shade on our front lawn. Zoe was loving all the attention she was getting from the older girls in the neighborhood and was actually very well behaved through the whole thing. I can't say the same for Dizzy though. He got a little upset with all the activity and was banished to his crate.

Our next door neighbors are the main organizers so most of it took place right in front of our house. There was a huge bounce house a couple houses down. The police came and "arrested" any kids that wanted to be arrested and put in the back of the squad car. The fire department came and gave the kids are very good soaking which they all thoroughly enjoyed. People had homemade goodies going around and a big popcorn machine. I just sat with Jackson and so many people came up to meet us and hang out and talk. Several neighbors also expressed interest in learning to take care of Jackson in case I ever need someone to watch him. It was really a fun day.

Later after Lee got home we went out to eat dinner with everyone, also right in front of our house. Not too many vegetarian options but next year we will definitely be more involved and I am sure we can make a few dishes and make sure there are some boca burgers and veggie dogs to grill.

I am just so happy to live in such a special neighborhood. It is so different than any place we have lived before, but I am loving it!

Jackson's "new" and improved wheelchair

We got Jackson's chair back Thursday, only to send it off again. Jackson needs his headrest to sit well behind the plane of his body (not sure why, odd shaped head maybe?). The way they had it did not allow it to go any further back and it was maybe only even with his back cushion. So they took it and built up a spacer so it could move back farther.

We got it back again on Friday, only to find that again something was not right. We got a special headrest for Jackson called the HAWC. We got this because he had been able to bring his head forward and then get stuck under his old headrest...not good, especially while I am driving him somewhere by myself and not being able to pull over for a while. We were expecting to also have the swing away mount for the HAWC so we could get him into the chair without removing the headrest and/or the laterals every time but they did not order it. So we have to wait for it and in the meantime getting him in and out is a real PITA!

We took it for a test drive today. I really like it a lot. Jackson was able to sit up relatively upright and remain comfortable. We took a pretty long walk and even though he was pretty upright, he did not drool at all which is pretty amazing.

For your amusement...

Zoe learned to clap yesterday. She is hilarious! If you say "YAAAAAAYYYYYYYY!" she starts clapping and saying yay too. (She also likes to play with my computer as you can see!)

I am very happy with Jackson's new school so far

The principal just called to give me an update on how things are going with finding a van to transport Jackson to and from school (He needs to have air conditioning on the bus and their buses do not have it). She has narrowed it down to 3 companies and is just waiting to hear back from them. He is probably going to be taking a taxi to school...the district deals with several companies that have divisions just to transport kids to and from school.

His IEP also states that he needs a nurse on the bus with him. She was hoping that I would be ok with a very trusted and experienced aide riding with him since she is having trouble finding an LPN. I told her I would be fine with that unless something happens that makes me become not ok with it. She said she completely understands that and hopes that I will come to her immediately if I have any concerns or problems with the aide, including just any personality problems.

She also invited me up to observe Jackson's class any time I wanted to. I would love to do this, I just need to figure out what to do with miss crankypants for a few hours. Any volunteers? :)

He had a good day

He had a good first day! Everything seemed to go pretty well. He really liked it when the teacher read them a book. In fact, he was laughing so much during the book that they were wondering if he has laughing seizures! I have wondered this before myself...when he starts laughing he really belly laughs for a while, but according to all his EEGs it's just laughing. He also did an art project today.

Jackson's first day at school

He was quite nervous I think, which I would probably be too, starting out on the first day at his new school. He was also kind of sleepy. He does not like his purple loaner chair (not because it's purple but because it is not as comfortable) so he was not feeling too smiley.


The bus driver was very nice, as was the aide on the bus, but I will be happier when he has a nurse to watch over him. They did not realize he needed a nurse on the bus and it might take a little while to find someone, so they are working on it.

Lee and I (and Miss Z) went up to school to get him settled in. They had a nice little flag ceremony since it was the first day. Jackson was still asleep but woke up soon after I got there. I spoke with the nurse to get the feeds and the meds all straight. Since he has gym first period, we decided that we were going to start his breakfast before he gets on the bus. Then he can be all done and ready for gym when he gets to school.




He was making a few smiles before we left, including a beautiful smile when one of the aides in the class introduced herself. I am so proud of him for this because it is something that we had been working on and talking about (smiling as a way of greeting people) but I had never actually seen him do it unprompted...yay Jackson!

Zoe's new food

Zoe has been a total food refuser lately (she is still big on mama's milk though). She does not want to eat baby food any more, but hates most table food. We went to the store today looking for foods she might possibly like. I made her some broccoli cheddar soup for dinner expecting her to reject it, but she ate a lot of it! We even switched to a real spoon so she could get more in faster. Yay!!

She has been working very hard at walking. She is cruising the furniture and using pushable items (boxes, baskets, wheelchairs, etc) to walk behind. She does not want to walk holding our hands...we call her our Lonesome Joan.

She is sleeping pretty decent most nights and just this week we went down to one nap a day because she had been not wanting to nap in the afternoon anyway.

Communicator trial

Yesterday Jackson got to try out a communication device that is activated by his eyes. It is a really cool system (I tried it too!), but the trial did not go so well. Jackson was really sleepy and wouldn't wake up. In fact, he completely fell asleep while the guy was here. But he said that we will most likely be able to get a longer trial with it when he goes on vacation unless someone else in the company needs it. I can't wait, I just know that Jackson can do well with this once he figures out what he can do with it.

Some good news!

I got a call today that soon we will be able to start back up with respite!! Yay!! We will only have 4 hours a week instead of 5, but since Jackson will be in school full days that will work out perfectly! We will have the same respite provider too, so that will be great since she is so good with him.

We also went to Jackson's new school to meet all his teachers and therapists and tell them all about him. I felt the meeting was a bit chaotic (mostly due to someone little and LOUD!) but hopefully he will have a great school year! He starts on Monday.

The bad news is that we had to get a loaner wheelchair for Jackson while his goes in for growth adjustments. Can you believe the one they brought is purple?! So he is going to be starting at his new school with a purple chair. :( It will be worth it though, he is getting all new cushions and a new harness and headrest. It was looking really small for him and we have been waiting since January for this to get done.

A funny video to brighten your day

Here is my silly daughter playing with Dizzy.

I am so excited!

I just made an appointment for Jackson to get a trial with an eye-gaze communication device! The rep is coming next Thursday morning. I really hope Jackson will do well with it and that if he does do well with it we will be able to get insurance to pay for at least some of it.

Loving this neighborhood!

Today we got a surprise at our front door as Lee was leaving for work! Neighbors had left a couple bags of (DELICIOUS) homemade scones for us!

Ha.

Apparently the owners of City Kids don't think a blog is an appropriate forum to discuss personal feelings so they called to say that Jackson is not welcome today for his last session. Nice!

Dumped!

Yesterday I got a call from Jackson's PT. Essentially he is being dumped from therapy at the clinic where he has been receiving PT and OT. Tuesday will be his last day there. Both of his therapists are pregnant and Jackson is quite labor intensive and heavy and I guess they don't want to deal with him any more.

He will be starting school (August 31) so we had asked them a while back to see if there was a time slot later in the day so that he will not have to miss school to come to therapy. I had also told them that I would consider an early morning time so then I could just drop him off at school after therapy. The PT said that since there was a waiting list for the afternoon times (ignoring that I would consider AM times) that they were not going to be able to see him anymore. I asked if he could finish out the summer and she said that since she was going to be taking vacation time and the OT was not going to be able to handle him alone that the answer was no.

I am pretty pissed off and hurt about this. First, it is very short notice and not at all professional, especially when Jackson has been coming there for years. Second, Jackson has had to deal with so many changes lately, it's really not fair to drop him all of a sudden like this. Third, with being on break from school AND losing his respite day AND being dropped from City Kids, that leaves him with NO activities for the rest of the summer and with the amount of attention Zoe has been demanding lately and with Lee and me trying to unpack and organize from our move it really sucks to be a kid who can do nothing for himself.

This was the best and pretty much only exercise that Jackson gets all week and he had such a good time there. They had a reasonably good grasp of his physical needs (not so much of his cognitive strengths) and they really were able to make it fun for him. He will get therapies at school, hopefully they will be a much better quality than what he was getting at his old school. He will have PE 5 days a week there at least.