7.24.2014

Here we go again...

Jackson was a summer school on Monday when Randy went to pick him up.  As they were walking down the hall with J's aide, "the cough" started and the strider kicked in.  Randy calls me, swings by and picks me up and off to the Chateau we go.  These episodes seem to come out of the clear blue nothing.  One minute he's fine, the next, no air.  This time, I was a little more nervous because he was unable to speak in the car. The nurse we had in the ED said she could hear him before we even got through the doors.  After the racemic epi and steroids and an almost rebound, he was better.  Below is a breathing mask selfie and three attempts at an "I'm going home thumbs-up."

Genetics follow-up today.  Talked with the nurse practitioner about these episodes and she recommended seeing Pulmonary.  So, I will make an appointment tomorrow and see where we go from there.

Jackson will be 10! yes 10! next week!  I will post all the festivities after the fact.  

Object du Jour:  The 373LM.  A Liftmaster garage door remote given to Jackson by his 3rd grade teacher.  We don't leave home without it.

5.09.2014

Wheeeee....

J has been a busy boy the last few weeks.  Two weeks ago, I was at a PTA meeting at school (I'm on the board, that's a whole 'nother fun story), anyway, Randy comes a bit late to pick the boys up and the meeting has already started.  He takes Jackson out of the room and heads down to the cafeteria to get Jameson from the kid's group.  A few minutes later, Randy and Jackson appear at the doorway of the library, with Randy mouthing, "I need you NOW!"  I come out and see Jackson bleeding like a fountain down the side of his head and all over his coat and shirt.  I call the principal out of the meeting and ask her to get me some supplies to clean him up with.  She wants to call an ambulance; I just want to see what's going on under all the blood.  I get him cleaned up and see a pretty good hole in his head, where he had hit the stairs.  He was carrying the iPad and tripped.  He had to choose head or iPad, he chose iPad.

I drive him over to the Chateau because I was pretty sure he would need stitches.  The ED was a full house. I've never seen it that busy.  Most of the chairs were filled, there were kids crying, bleeding, throwing up in buckets, it was insane.  I should checked to see if it was a full moon.

The initial assessment was that yes, he did need stitches, but we had to wait for a room to open up.  We got there at 7:30 pm and they didn't get us back to a room until after 10.  Jackson was pretty worked up that he couldn't touch his head on that side because it's the side he tends to stim on.  He kept typing, "Blud, hit your head" on the iPad.

After they finally took us back, Jackson decided to document the process with selfies on my phone.

Numbing cream.

Bandage to prevent touching the numbing cream.

Looped on versed.

Stitching him up!

End result.

Finally got home a little after midnight.  Got the stitches taken out this past Tuesday, which was more traumatic than having them put in.  Versed is a wonderful thing, even though he was looped out of his mind and couldn't walk straight.  LOL  

Then, on Sunday, "the cough" decided to pay us a visit and we needed to head to the Chateau at 5:30 am.  I had to wake up Jameson and bring him along because Randy was out of town for a wedding.  Here's how Jameson decided to spend his time with the extra supplies from the mask kit:


Jameson was also thrilled that the doctor gave him a cherry popsicle at 6 am.  Jackson responded well to the meds and we were home by 10 am. 

Whew.  I need a nap.

Object du Jour:  The iPad and a huge box of old, old, old garage door remotes that a local garage door company gave to Jackson.  It's raining remotes!


That's how we roll...


This is something I'd never thought I see...J on rollerblades!  They rollerblade occasionally in gym class and tried some on Jackson.  He did OK with lots of help, but didn't want to talk about it when he got home.

GI appointment a few weeks ago.  Weight and height up, which they are happy about.  The team still wants him to expand his food horizons, he will now eat chicken sticks, but that's the only new thing he's added in awhile.

Trip to Disney World was a success!  Jackson went on all the rides he was tall enough for.  Some he liked, some not so much.  I'm happy he tried them though.  We did lose a garage door opener on the Big Thunder Mountain Raiload.  That wasn't good. Jackson was howling, we thought it was ride, but it was the remote.

Object du Jour:  A huge box of garage door openers from a local garage door place.  So generous of them to let J have them!

1.09.2014

Randomness...

Here's some fun pictures from the last month:


 Jackson, at Jameson's birthday party at Chuck E. Cheese, he was not happy to be there at first.  He kept the hat on during the whole visit and kept a garage door remote in each hand for security.  Toward the end of our time there, he was running around and even had fun playing some of the games.  It just takes a bit to warm up!


In December, Governor Walker and his wife, Tonette came to Children's Hospital of Wisconsin to make Christmas ornaments with some of the kids.  That's him in the suit, next to his wife in yellow.  I'm getting interviewed by a local TV station about what it's like to hang with the Governor.  LOL  Jameson chatted up Gov Walker about Santa and how to clean marker off of fingers.  Jackson wasn't impressed.  

This picture cracks me up.  It's Jackson at his Christmas concert at school.  I was hoping he wouldn't see me, but we were in the second row.  He's trying to plug his ears and chew on his fingers at the same time.  He kept yelling, "Mommy, get the iPad."  So much for singing!

Every year Jameson gets to pick where he wants to eat for his birthday.  This year, all he wanted was crab legs and onion rings from Hooters.  We're classy like that!  He was very happy!

Object du Jour:  Garage door remotes, he just got a Stanley in the mail from Aunt Donna today, can't wait to see his face when I pick him up from school!