Well after spending over an hour on the phone today with Children's to schedule Cameron's many appointments for September I am ready to scream. How this can be so difficult is beyond me, especially since it's one person coordinating it all!
I had this feeling of relief when we left Dr. Bowman's office last month, as they said we'll set it all up and call you tomorrow with the full plan of all the appointments you don't need to do a thing - yeah!!
Wouldn't you know weeks passed and I heard nothing, till I got a random call from Radiology last week to set up the Head Cat Scan - ummm, Ok but I need to set up my Dr. appts first to be sure the CT is done prior to Dr. appt. This prompted me to call the Spina Bifida clinic last week and get things going. There was lots of back and forth. I get it, it's hard to coordinate 3 Dr. appointments and 4 tests - I never thought it could all happen on one day, and frankly I don't want to do it one day.
So we are now going to be taking care of all these tests and appts over 3 different days - no big deal, but the fact that it took an hour to accomplish this is insane. At one point she said to me, well the Dr. will want him to be somewhat alert for the appointment so we'll need to leave enough time between the sedation from the CT Scan and the appt to make sure he's alert. Here's an idea, let's schedule the CT scan on a different day?????? Oh and while we're at it, probably not a good idea to try and do a muscle test on the day of the CT Scan. She responded, yeah you're probably right let's move that one too.
Oh it goes on and on and on... in the midst of all this we are working on trying to get Cameron's annual IFSP scheduled, this is where all the therapists do an assessment test on Cameron and then we discuss it together, add in that we need to get a new PT b/c ours is moving to the burbs- ugh! And then of course Miller the dog starts having a seizure - poor guy!
My list is never ending and I can't even remember what I was thinking two seconds ago sometimes.
It's a good thing I am only working part time as this is a Full Time job and then some.
Despite all of this I realize we are lucky that Cameron is doing as well as he is, I have no idea how the parents of chronically ill children do it. I try to remember when my day is annoying like this one, someone else is having a far worse day.
Thanks for listening! xoxo mom
PS Coming soon fun pictures of our trip to South Haven, Michigan - it's on my to do list :)
Wednesday, July 11, 2007
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3 comments:
Hang in there Rory!! Your in my prayers!! Cameron sounds like he is doing fantastic! Escpecially with the crawling and pulling himself up!! Matthew didn't crawl until 12 months and didn't walk until 14..almost 15!! I hope life isn't as frustrating tommorrow! One day at a time!
Sue
What do you mean you don't know how parents of chronically ill children do it!? You are doing it!
You know John and I - we don't have nearly as many doctors appointments as you do these days. When I read about your day even I get frustrated, and I am just reading it. :-)
You are doing great! Vent all you need to, you deserve it! I hope you find some time to relax. Don't forget about that essay you intorduced to me about a mom and reaising children. It makes a great point!
XOXO
Barb& Johnny...
P.S. John ate a cereal bar today! BREAKTHROUGH!!!
Racks;venting is the best thing. it can be incredibly frustrating with the scheduling and the phone + coordination + then you have cameron to take care of (and mattie!) :) and miller :)
keep hangin in there. you are only human and talking about this stuff and explaining how tough it is to go thru a day is quite exhilariting. please keep doing it because we are out here listening and ready to help at moments notice. xx donnelly.
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