Friday, February 5, 2010


We had a meeting scheduled the other day with one of the doctors involved in Joshy's care.  JF arrived earlier due to a mix up with the appointed time, apparently said what he had to say and left.  When I arrived 1/2 hour later, and he wasn't there, I met with the doctor and another support person anyway.

I deal with people -and situations for that matter - very differently than JF.  A person trying to understand may view me as agreeable, when I may actually be considering. I may look like I'm sitting on the fence, when perhaps I either have no strong opinion on the topic at hand, or I've seen the other side's point of view and Ive reconsidered my ideas.  I do have strong beliefs.  I know what I like and what I don't.  And if the need arises, I will make my thoughts clear.  Otherwise, I will be amiable, and listen. If I have to get angry to get what I want, then Ive gone about things the wrong way to begin with.

I listened to what was said at the meeting, and some information I am still considering.  Some I disagreed with, and made that fact perfectly clear.

Importantly, I did neglect to say however that I feel not enough is being done for Josh. Or rather our decisions, especially if they're "outside the box", are not supported. When we left hospital, I thought he would receive a regular physiotherapy session for example, which hasn't happened. Our decision to use HBOT is frowned upon.  The use of HBOT in conjunction with botox is most certainly not approved. An appointment for an orthopedic surgeon, who specialises in cerebral palsy and joint contractures (the high tone in Joshy's legs, for example) was made on our behalf, but for 7 months later. (Thankfully that has been brought forward to mid February).  We've repeatedly asked for more oral exercises, however because Josh doesn't make meaningful or purposeful mouth movements, they wont give us any until he has more mouth and jaw movement, whereas we think the opposite; why not exercise his mouth to encourage and develop what is there, and if nothing comes of it, at least we can say we tried to make it happen, rather than waited for it to happen.

Talking and networking with other families, it is clear that we're not the only ones who feel this way.  We have to become, in effect, our own case managers, and push for what we feel is best for our children.  Some of us just push harder than others, or we demand rather than compromise.  Hmmm, compromise is not really the right choice of word, because when we're talking about our kids health, nothing should be compromised. Im thinking more along the lines of "discussing and reaching an agreement, with tact, diplomacy and consideration with all parties involved".

Having said that, even if we don't agree with all of the decisions the medical profession may suggest, we do still need them for what they can do.  I also feel we should disclose anything we're doing, and everything we're giving Josh, and not just provide partial information because it may be more like what that doctor wants to know.  To reach the best decisions, all information should be provided, and to all involved in Josh's care.  I also need to be kept informed with what happens to my son, and there have been a number of occasions now, where Ive inadvertently "discovered" things (unrelated to medical staff)...

And I don't need to act like a petulant child to get what I want.


Anonymous said...

I know both of you, and all I can say is thank goodness Josh has his father

Wendy said...

Thank you for cementing my decision to disallow anonymous comments. If you cant own up to your statement, you're obviously misinformed, and don't "know" me at all.

Sue said...

How could anybody be cruel enough to leave negative comments about Josh's mother or father - so sad. I don't know either, but they sound like they are doing an amazing job and need positive support every minute of every day.

Copyright 2009 Joshua