About time for an update, don't you think?

Jackson's summer school ended last week and this week he is starting summer camp (had his first day yesterday). It's actually at the same school, but it is through special recreation rather than the school district and has a whole different set of people for the most part. It's a little stressful getting everything worked out. There were a few interesting SNAFUs yesterday but he seemed to have enjoyed it and that is the most important thing. At least that is what I keep telling myself.

Today he is going to the beach, which brings a whole new level of stress for me. It is super hot today so I really hope they are able to keep him cool enough (since he has temperature regulation issues) without freezing him in the lake. Plus, they are changing the kids into their swim suits (and swim diapers) before leaving the school. So I have to worry that (because swim diapers are not made to hold pee, only solids) he will soak his wheelchair on the bus ride there or the bus ride back and then have to sit in a pee soaked chair all day. Hopefully they will follow my instructions and everything will be fine.

Lee's friends have been working for a long time on adapting our special needs jogging stroller to double as a bike trailer. Finally, after more than a year, it is finished. The guys took it for a short test run up and down the street and it worked well. We just have a few improvements to make (getting a 5 pt harness on it and improving the canopy coverage) and it will be perfect.

Here is a video of the test run. It was really hot so we were not able to do a longer ride, but the guys both enjoyed it!

Zoe is doing well. She is loving playing in her sandbox and her kiddie pool. That and loving on her dog...perhaps loving on her dog a little too much.

Jackson's Cow

Jackson made a cow in summer school this week.  I don't know what it was about this cow that he liked so much, but he grinned and grinned as he was showing me and he seemed very proud.  So I had to share! :)

Splashing!

Zoe LOVES the water!  Today was a hot one so we suited her up and went out to play in the sprinkler.

Someone needs to buy this child a wading pool!!!!  Yeah...it's on my to-do list!

blablablablabla!

Oh what a crazy day!  I had to take the van into the shop to get the AC looked at today.  Made an appointment for 10 and left with plenty of time but my stupid navigation system sent me all sorts of wrong ways and then said I had arrived when I was still about 20 minutes away! Meanwhile as I am trying to figure out where the heck I am, the school nurse called with questions about Jackson's feedings.  The regular nurse retired at the end of the school year so this was a nurse that had taken over for her, although she has been at the school for a while.

When I finally got there, I sat and sat and sat and waited and 2 hours later they still hadn't even looked at the car!   The guy came into the waiting room and said all his guys went to lunch and it would be another hour and a half!!  Ok why did I even bother making an appointment?!!  I complained to someone who was obviously higher up than the guy I was talking to at first and they got it done in 30 minutes.  Grrrr! And I should mention they were not actually fixing the problem, they were only making sure they knew what the problem was so they can order the parts which will then need to be installed when they arrive in about a week.

Lee was home with Zoe and he had to cancel some appointments because it took so long for me to get back.  It was so hot and muggy today, I sure could have used the AC on the way home.  Then once I did get home I had to grab up Zoe and run to the grocery store before Jackson got home from school.  It is so much easier to only take one kid with me and not have to push the wheelchair while pulling the cart.  He had been off school for the last 2 days and I had been sick on Tuesday when I had originally planned to go so by now we were low on everything.  And it's the weekend so if I waited I would have had to do the push-pull with Jackson tomorrow.

So then I got all the groceries (did I mention I forgot to bring my list!) loaded into the house and put away and I was about to sit down and relax when the phone rang.  It was Jackson's school.  The AC on the bus had broken and they wanted to know if I wanted to come pick him up.  I asked how long of a bus ride it would be and they said 45 minutes so I did go pick him up so he wouldn't have to spend that much time on a super hot bus.  Instead he got to spend 10 minutes in our slightly less hot van.  (I should mention that I really like the aide they have on the bus for him.  She was the one who let them know to call me to see what to do and she waited with him inside the school and brought him out to the car when she saw me pull up.)

So I got him into the house and was about to give him water.  I looked on the back of his chair for his pump and guess what...  It wasn't there!  I called the school hoping that they would still be there.  Luckily they were.  Yes, the nurse had the pump in her office and had forgot to put it back on the chair when she was finished rinsing it.  But she offered to bring it to us....YAY!!  I was so relieved I did not have to get the kids back in the car and go get it.  And we could not have done without it all weekend.

The other frustrating thing that was going on at the same time is that our halogen light in our living room had broken for good last week. I spent all week trying to find another very bright floor lamp since we have no overhead lighting in the living room, that is the main light source for the room we spend the most time in.  I ordered one I liked and it had come today.  I was trying to put it together but the very last part would not go together...the little tiny parts were bent somehow and just wouldn't slide into place.  Of course it was 30 minutes after the company had closed for the weekend so I have to wait in the dark until Monday to see what to do.

Hopefully the rest of this evening will be smooth sailing! ;)

 

Last day of school!

Jackson had his last official day of the regular school year yesterday, so I now have a big 2nd grader!!  He gets today and tomorrow off and then he starts summer school on Friday.  If you didn't know, kids in special ed can go to school during the summer if the IEP team thinks they will lose skills with a long break from school.  He loves school anyway so everyone is quite happy with the arrangement.  He will attend 3 weeks of "school" (educational) and 3 weeks of "camp" (recreational).

Tomorrow we are getting his wheelchair and his stander repaired.  His wheelchair brakes fall down onto the wheels (making it very difficult to push) if we are walking any distance.  Also, his chair takes quite a bit more effort to push than the loaner chair (remember the purple chair?) did so I am hoping that they can do something to make it roll easier.  His stander was actually repaired in the winter, but is again having problems.  If I stand him at an angle above about 45 degrees, it will not lock into place.  It ends up either creeping forward or back, which is not at all safe.  At an angle below 45 degrees, it does lock into place but there is not much point at all in even putting him into the stander at that angle.

Jackson is 7 years old!

Jackson turned 7 on Memorial Day!  We celebrated the day before (thank goodness since Monday was quite rainy!) with a picnic and a little party.  Granny came to celebrate with us and actually ended up staying an extra day due to the weather.

 Here are some pictures of our picnic!  Zoe spent much of the time playing in the dirt under a tree.  I found out that Lee can not stand to see her dirty!  He is pretty obsessive about it.  It made Granny and me laugh!

Jackson enjoying chilling in the great outdoors.  Granny made him his own padded waterproof mat to lie on .

I showed Zoe how to put maple seeds on her nose.  She thought that was great fun!  Did you ever do that as a kid?  Lee hadn't, so it was new to him as well.

Jackson was not quite as impressed with it though!

Here, try it!  It's really fun!

 And pics of our little party...

The cake.  Jackson did have a little taste of the frosting and some ice cream.

A motion activated monkey that rolls round laughing hysterically.   Jackson found it pretty funny but I think Lee liked it even more than Jackson did!

 A big scary dinosaur!  Jackson really liked that one and tried to hug it!

He got a ton of books!

 Here is Zoe checking out one of his new books.  (I made her skirt, I am so proud of myself!)

And they are holding hands while checking out another book together...how sweet is that!

Zoe and Granny reading

A repeat for some of you

but it's too cute not to put on the blog also.  She got a bit camera shy but she was really going good before I got the camera out.  Presenting Zoe's "I Love You" song.

untitled because i can't think of anything to call it. just an update i guess

We had Jackson's IEP meeting on Tuesday.  Everything went well.  It was short and easy.  Pretty much everything is staying the same, which is fine with me.  Except that his vision teacher is moving to consultative only (rather than providing direct services) which I don't think makes a lot of difference since she is always saying that she doesn't see a lot of characteristics of CVI in him anyway.

Zoe is talking more each day.  She is stringing 2 and 3 words together in sentences now.  She feeds her dolls and stuffed animals the same things she eats and often can be found hugging and loving on them. She does this really cute "ooohhhh" noise as she hugs them.  And she has started to put on my shoes and walk around with them on.  She is turning out to be a very good little girl, if not a bit over-emotional at times.

Some pics and videos for your viewing pleasure:

My 3 sweeties snuggling up

Zoe swinging in the park last week.  It was cold that day!

Taken by Jackson's teacher on a field trip.  He is having a blast bouncing!

Talking!

Walking in Mom's shoes

Ultrasound results

Everything looks normal.

My funny girl

For the past 2 days she has been running around saying "mee chuu". At first we could not figure it out...until she started shaking hands. It turns out she is saying "nice to meet you!" She will shake her own hands, shake my hand, Lee's hand, Jackson's hand, the dog's hand, even shake her feet!

Hilarious and adorable is my girl! I sure do love her!

Alright, time for more boring medical stuff

So anyway, Jackson had an orthopedic appointment last week (Tuesday I think it was).

Hips look about the same, so good. Right hip looks worse than left. They both come out of where they should be when the legs are straight. They both look a lot better when his legs are frogged. Luckily that is a position that he kind of favors naturally so we are still just watching them with yearly x-rays and not treating yet.

Spinal curve has progressed somewhat to about 30 degrees. The doctor says this is a slow progression and we will continue to watch with x-rays every 6 months. He should continue to wear his TLSO as needed for support in sitting and standing, but does not need to wear it all the time.

His braces are getting small but still fit well enough that we can get a few more months out of them. We will go back in August and get casted for new ones.

His right leg is shorter than his left leg and his right arm is smaller than the left arm. His doctor was somewhat concerned about the atrophy. He said it can be an indication of kidney problems so he ordered an ultrasound of his abdomen. Personally, I don't feel there are kidney problems and we can chalk it up to his wonky central nervous system, just like every other problem he has.

So today we went to get the ultrasound done with a fun stop at the lab first to get some blood drawn to check his seizure med levels. It was an easy, painless (aside from the poke at the lab, but they got it on the first stick so a-ok), and fast test. He was back at school by 11 am.

They said the report should be sent by tomorrow to Shriners so if I don't hear I will call Thursday or Friday. But like I said, I don't think there will be any kidney surprises.

Another one that made me laugh

I was in Jackson's room getting him dressed this morning. Zoe comes in and starts looking around at his walls which are decorated in a space theme. She points to a planet and says "ball". Then she points to an alien and says "martian" clear as day.

Isn't she a riot?! Where does she get this stuff?

This girl kills me sometimes!

She is too smart! I was just getting her dressed and as we were putting on her pants, she started making her what-is-this-called sound. I was a little confused since I know she knows they are pants and it is a word she says often, but I told her they were pants anyway. Then she says "purple!" All I could do was laugh...yep, the pants are purple!!

She's only 19 months old!

A beautiful day

Jackson had only a half day of school today so we spent most of the afternoon out in the back yard. It was just about perfect weather...nice and sunny, about 70 degrees, and a cool breeze. Jackson doesn't get to spend a whole lot of time outside because he is so sensitive to the cold and heat, but today was a good day for him to be out as long as he was in the shade.

He wanted to enjoy some tunes while we were out there. Not sure if you can see from the terrible pics my phone takes but he is grinning like crazy!

Today Zoe decided she wanted to sit ON the flowers. I told her not to sit on the flowers, that it will hurt the flowers, that she could sit next to the flowers and gently touch the flowers...but then she had a bit of a tantrum. I had to give her a time out, which she really hates, and then she decided it really was ok to sit next to the flowers after all.

Here she is sitting on the flowers which are now flat.

Yes, we have a bathtub full of dirt and plants in our yard. It was there before we moved in! I kind of hate it and wish I could get rid of it, but it is too heavy for me to do myself. It does give Zoe something to dig in though. She loves playing in the dirt. :)

This made me smile!

Every day I get a note from J's teacher describing some things he did during school.  Since he can't talk, he can't really tell me himself and I like to read the note in front of him and ask him questions about his day.  Today she wrote:

"During circle I told everyone that the new month was May.  Jackson got a big smile on his face.  So I said 'What's so special about May?'  And he smiled again.  Then I said, 'Oh I know why you're happy it's May- because it's going to be your birthday!' and he giggled.  It was really cute.  He was very excited to tell everyone the date."