Jackson stayed home from school today

Because his bus was so late!! When I called the bus company they said the bus would not be there before 9:30 which means the earliest he was getting to school was 10am. School starts at 9. They load them on the buses to go home around 11:30 so at the most he would be getting 1.5 hours of school with 1 hour of bus riding. Ugh!

Here's one for the ages...

I have not mentioned this here yet, but Jackson's GJ got clogged up a couple weeks ago. So I took it out and placed a regular G-button. Because of that, I am trying to get all of his water and calories in during the day instead of doing some at night like we used to. He is doing well with it so far, but here is what happened this week.

Because it is too hard for me to get all of his water in on the days when he goes to school, I asked the nurse a few weeks ago to give him 5 oz of water at the end of the day by syringe. I sent a 60ml syringe in for him. I told her to go slow, but not too slow, maybe 1 minute per ounce.

So I was there observing yesterday. I saw the nurse give him a tiny little amount (like 5ml) by syringe right after his feed ended. I thought to myself well, maybe she is just flushing after the feed...even though before I asked her to give him water, his tube was never flushed after his feeds.I did not see her give him any additional water and I was there until he got on the bus to leave.

So when they get to the house I asked her if he got his 5 oz of water. She said "yes, you saw me right there by his chair give him the water." I said "that wasn't 5 oz of water!" Then she said that it was 5 ccs of water and a cc is the same as an ounce!!!!!!

WTF!!!?

So what kind of a nurse doesn't know the difference between a cc and an ounce?! Why would I send a 60cc syringe if I only wanted her to give him 5ccs?! I am just dumbfounded! And upset that Jackson has not been getting his correct amount of water!! No wonder he has been constipated!!!

So I made sure the nurse who was doing his feeds as well as her supervisor knew what happened and I very clearly spelled out exactly what he should be getting.

I got this in his notebook today...

"Hi Chaney, We technically should have had a Dr's order for the water. On reviewing his orders I see the last one we had was from 5/06 for tube. We need a new one each year. I'm sending home a blank one, please return when the Dr. has completed. Thanks, M"

No "I'm sorry my nurse is a total dumb ass" or apology of any sort or any mention that 1 ounce does not equal 1 cc. It is always about placing the blame back on me for anything harmful that happens while he is in the care of the school. This is not the first time, as some of you may remember. (Not that I post everything here anyway, since the principal printed out the blog entry from when he got choked on the bus and slapped it down on the table to intimidate me when I met with him about it!)

Can you believe I have to get a doctor's order so the school can give him WATER!?

The order she sent home was for "Tube feeds plus 5 oz of water". I am going to change it to "Tube feeds plus anything else mother tells you to do" (I am serious!) just to piss her off.

Jackson's new AFOs

Jackson got his new AFOs this week. I can not believe they actually fit him because they look so big compared to his last pair! He picked out the dinosaurs and the blue straps all by himself.

They are different from the kind he usually gets because they were made in 2 parts. They are a little harder to get on him, but they seem to be comfortable and fit well.


Here are the last 2 pairs compaired with the new pair. I don't think I have his first pair anymore.

Feeling a little guilty for not updating in so long!

But you know how it is...we are busy!

Anyway, Christmas was fun. Jackson got a lot of fun presents. His Granny came to town to visit so he got to have fun with her and get MORE presents! But I have to say...the biggest hit of Christmas was a complete surprise to all of us when it showed up today at our door!

Some clients/friends of Lee's sent Jackson the coolest remote controlled firetruck!! It is adapted so that he can use his switches with it. It is very loud and Jackson just loves it!! Thank you so much Megan and Chris!!