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Josh has a very large DVD collection shelved in the family room near the DVD player.
Josh has an equally impressive collection of videos in the office near the VCR.
At the end of each day, about 9 PM, Josh puts his DVDs and videos away, shuts down the computer and heads upstairs to his room.
Each day, there are certain responsibilities that must be taken care of before Josh can access his media collections. He has come up with a "work around" solution. Most nights, he discretely carries up a few "fav" dvds or vids and drops them between his bed and the wall. Thus providing himself full and unfettered access.
Here he is caught with pajamas still half on - leaning into what can only be described as a treasure trove.
What a hoot!
I told my husband on the way home from the hospital I thought I was becoming bolder. He smiled and when I asked why, he told me he didn't think I had any room for bolder.
Josh's EGD scope (upper endoscopy) was scheduled for 9 am. We arrived at 8 per their instructions. The nurse interviewed us to complete her forms and I reviewed each page of every document I brought with. I asked about speaking with the anesthesiologist and she kinda stumbled over her words.
We changed Josh into his hospital gown, got him into the hospital bed, and the nurse started hooking him up - O2 monitor, blood pressure cuff, 4 EKG leads and he just took it all in stride.
I asked that the IV be inserted in the OR after he was sedated and even made sure that a pediatric butterfly insertion kit was going to be used. Then another nurse came to "take" Josh. I told her that we hadn't yet met with
the anesthesiologist. She didn't stumble. She said she was going to be monitoring Josh and that he was going to receive Versed and Fentanyl. I was quickly able to make her understand how inappropriate that plan was. She shot out of the room. About 15 minutes, the same scenario was repeated with a different nurse. Honestly. Almost verbatim. About 5 minutes later, yet another nurse came in. She told us that an anesthesiologist had not been scheduled and that she was going to try to find one but if she couldn't, we would have to reschedule.
I told her not to bother. We were leaving. Almost on cue, Josh took off the gown and starting removing the EKG leads!!! Within a few minutes, we were heading out the door. Got home, called another doc at another hospital and make an appt for Monday afternoon.
What really confused me was the GI. He must have ordered an anesthesiologist because he scoped Josh before with an anesthesiologist. We had 2 clinic visits with him, too. And all of this within the past 6 months. Someone made a huge error.
I know the "twilight" meds would not have been okay.I still think I am getting bolder even if my darling husband thinks I've been bold enough all along.
PS - GI called today to apologize for the mishap. He said he wouldn't have done the procedure without an anesthesiologist. I was glad to hear that. He was understanding of our decision to go with a different GI, one at the nearby teaching hospital where Josh's urologist and orthopod are.
The face of anxiety. After 19 years of poking and prodding and that's not even the invasive stuff, he still dutifully lays there waiting the ultrasound technician to begin.
This happens every 6 months so the urologist can check the kidney stone that sits in the lower pole of Josh's left kidney. Each time, I pray that for Josh's sake, the stone is gone. Each time, the tech pauses and affirmatively clicks and rolls taking pictures of the hideous thing as it sits there almost taunting me.
Your kid doesn't wake up one morning looking like he might have a kidney stone. No, this particularly insidious medical challenge arrives with PAIN and BLOOD. And in Josh's case, the one passing out his body brought our awareness of this one. Nearly 5 years ago.
Anyone who uses AAC! Stories are encouraged from People who use AAC at ANY age or skill level. Stories can be written individually, in teams with other people who use AAC, or with support from others - it is totally up to YOU how you want to put your story to paper!
Watch Josh as he demonstrates two-handed typing. It is amazing how he has learned to keyboard. This is clearly an area of strength for Josh. He is a YouTube maniac! : )
Josh and I have decided to try something new: a flickr account. We will be taking a picture everyday (Project 366) and using a monthly theme to determine our photo. January is colors. Check out our Flickr.
Josh and I are going to keep this blog up but less frequently and will use it primarily to upload videos of Josh and AAC in AACtion!
http://www.flickr.com/photos/aacfamily/
No white Christmas but only 3 days later . . . it snowed.
I remember when Santa left Josh's gifts unwrapped because Josh was unable to unwrap. I also remember when Santa loosely taped the wrapping paper because it was easy for Josh to open his gifts independently.
Now, his fingers rip right through!
