This is our second week of respite

and I think it is going to work out really well. Our respite worker is named Kerry and she comes every Monday from 2-7. I have been hanging out here with them (but staying in another room) because I know there is a lot to learn when taking care of a kid like Jackson, and she has never done tube feeds before either. I think next week I will be taking my husband to a matinee movie though. She seems like she has a lot of common sense and she asks questions when she is not sure about stuff which is good. I feel like she has a good rapport with Jackson and he certainly enjoys all the attention!

We had some excitement during therapy yesterday

Jackson's button fell out!!

I noticed he had some wetness on his tummy but I thought it was just drool (he drools a lot in PT). A little later I noticed his shirt was wet and brownish...well then I thought the button was just open and leaking so I lifted up his shirt and the button fell right out! His PT and OT were quite shocked to see that!!! So was I but not as much as they were.

The balloon was intact but low, and it was way past time for me to change it out anyway. I took his bib off and put it over the stoma because it was leaking a lot and told his OT to hold it there while I ran to grab the bag on his chair in the other room. Luckily I carry an extra button, syringe, and lube in there. I changed it out really fast without any problems. Also, luckily I have a full change of clothes in the bag too as his whole outfit was rather pukey smelling.

Guess who visited our house last night!

The tooth fairy!! Yes, Jackson finally lost his first tooth that had been loose for months. I noticed it was VERY loose and he had been wiggling it with his tongue. I asked him if he wanted me to pull it out for him, and he answered yes. I was really nervous, but it came right out with one little pull.

Since it is his bottom tooth you can't see it unless you pull down his lip a little bit.



He is very proud! We have been hyping it up since it has been loose for so long.




The tooth fairy brought him money since he really has never handled or looked closely at money before. He got one of each: paper dollar, dollar coin, quarter, dime, nickle, and a penny. Then I helped him put it in his piggy bank.
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In other news....we are finally going to be getting a little bit of respite! We had been waiting for a while on some one to fill our hours. We were originally told we were getting some very tiny amount of hours, I think she said it was 60 hours per year. When she called yesterday she said she had someone who wanted to work Mondays from 2-8pm. She said the hour limit was going to be waived. She is going to set up a meeting for sometime next week. Hopefully she will be reliable and good with Jackson. It will be nice to have someone to interact and play with him and just pay attention to him for a few hours.

Long time no update

Jackson was pretty sick with a virus not this last week but the week before. He was home from school from Tuesday on. He had a high fever, tons of vomiting, and just felt terrible in general. We were planning to go out for our anniversary the 25th, but were not able to because Jackson just felt too bad.

This week he is doing a lot better and he went to school all week. He is still having some GI issues beyond the ordinary though. It seems to slowly be getting better though.


We took him to fireworks for the first time this year. He has never been able to stay up that late before. I was not sure if he would even be able to see them (cortical vision impairment due to brain injury). But we thought we would give it a try. He looked really sleepy and I thought he might not be able to stay awake, but once the fireworks started he perked right up. He could at least see some of it and I think he really liked it. When a particularly exciting part of the show happened he made some appropriate appreciative noises and he smiled through a lot of it.