It's not a PD Day,

Thursday, November 25, 2010

But I'm going to blog anyways.

It's actually a bit of a 'free' afternoon for me, as another little homeschooled girl comes over to play ("socialize". Gotta have that hs'er buzz word in there). The girls race all around the house in fairy princess costumes and leave me

The past 7 days or so have left my . This is to say that I've had an on slaught of new and inspiring/stressful ideas to consider and also stressful events to add to it all.

Last week (on the actual PD day) I spent about 2 hours talking with two moms: one a homeschooler like myself and the other a mom who's had some experience with homeschooling, but generally is sending her kids to public school. She's also got a son with a number of challenges beyond the 'norm' so she had a good handle on where I'm coming from with Jairus.

By no means should you picture me having a with two friends. Hoohooo no, my friends. We made the grande error of scheduling this visit at the local . On a PD day. What were we thinking. Well, we weren't; we didn't have a PD day so we didn't think about the rest of Hamilton having one. So it was a . Just keeping an eye on my four while trying to talk was enough of a challenge, busting-at-the-seams full playland or not. About three times I had to take off at a full speed run down the length of the restaurant to snatch Afton from the brink of the parking lot, her giggling wildly all the way and making the drinking their coffee chuckle.

Anyways, it was a very interesting conversation which yielded some ideas I'm going to try or at least look into. One of those ideas was for us to learn sign language to help Jairus. At first I was rather horrified at the thought. We send him to speech therapy every week, and keep his augmentative communication device charged, and search out funding to send him to Tomatis training because....we want him to talk. With his mouth.
But here he is, 9 years old, and....can't really talk. His comm device, small amount of signed english, miming/acting out and inflected murmurs do not always do the trick. There are sometimes when we just don't know what he is trying to say. And those are moments indeed.
So I allowed the thought to for a bit. And it really started to. And I am rather excited at the possibility. Now just to find out where this can be done, how much it will cost and whether 2.5 year olds can learn too. Because if we're going to do this, we're all going to do it.

In comes the stressful event. Now, remembering that Jairus at one time in his life (for 3.5 years) could not even eat through his mouth, that when he did start eating he preferred yogurt and pudding and anything else of that consistency (and still does prefer them to this day; more the pudding), that he's undergone 2 previous x-ray swallow studies (one at about 6 weeks old) and that while he looks "normal", his dentist is still quick to remind me that his jaw is still quite small, Jairus choked on his food the other night.
As usual, I've berated myself for not keeping records on this sort of thing, but it's happened before. The first time was when he was about 9 months old and I was trying to put an ng-tube down his nose. He gagged and brought up phlegm, only to have it block his airway. I'll never forget the terror of that moment.
Jump ahead a number of years. We had bought one of those . Little did we know that hidden among the thin slices of tender beef was one big, thick, gristly piece. Which unbeknownst to us ended up on Jairus' plate. In his bid for independence, Jairus was attempting to take care of his own cutting, and somehow this piece ended up lodged in his throat. He of course managed to clear it and an extremely terse letter to Maple Leaf followed.
The incident repeated this past summer with a piece of chicken skin. And now Tuesday night while we were eating tacos. Tacos?
Yes. The only thing I can figure was that a piece of shell was caught, causing a traffic jam with what was swallowed after. After managing to clear his airway, Jairus spent the rest of the evening huddled on my lap. And I was happy to have him there.

The next morning I launched on my journey to get this looked into. Stop A was with the . Why is it that we can never actually speak to our doctors? The receptionist, seemingly used to parents using urgent language, did not seem at all concerned that I connect with the doctor. She insisted that I'd have to make an appointment and it would like not happen until January. I wanted to pull my hair out. She suggested I talk to my family doctor.
So that was stop B. This included pitstop B1 to call my phone company for the second time to ask them to figure out why suddenly the automated phone system at my doctors clinic does not recognize my phone. I've been racking up long distance charges (my dr. is in Brantford) on my cell phone (which it strangely recognizes) because it doesn't matter if I push 1#, 2# or 3#, nothing happens. I've been assured from both ends that it is not their problem.
Again, the receptionist wouldn't let me talk to my doctor, but I could talk to his . Oh, but wait, better yet, I could talk to her voice mail. At this point I insisted on talking to a real person and gave her a brief explanation of why. With a seemingly sympathetic tone, she connected to me to what I thought would be the nurse. But no. It was her voicemail. I left a message using slightly more buzzwords of an urgent nature then probably necessary and insisted she call me immediately. I heard nothing the rest of the day.
Stop C was to call Jairus' old Occupational Therapist to ask her to look at her notes and determine if we had dealt with this issue before and when. This kind of ammunition is good when heading into doctor territory. Again, I left a voicemail. She only works Wednesday and Thursday mornings but alas, I did not hear from her yesterday or today. Double
Pitstop C1 was to talk to James to see if he could do anything in person from the Mac side of things. He tried calling the pediatricians offices but got the same snippy-snip as I did. He went down to the doctors academic offices and discovered he was at another hospital for the day. Finally, we settled on an email that we knew would be delivered to the doctors blackberry. I wrote it up and James sent it from his Mac address so that it wouldn't be caught by some snippy-snip receptionist. We got a read receipt about 2pm yesterday. As of now, the doctor has not contacted us, and he apparently leaves the country tomorrow. Complete growl of
I called back the family doctor today to have the nurse tell me she tried to call back but got various messages of out of order, not available and other such crap. After I gave the receptionist a piece of my (nicely of course) (sorta) I had to argue my position with said nurse about whether or not a swallow study was in order. She insisted Jairus needed to come in and see the doctor (how much do I hateth that line? Let me count the ways....) but at least she got him in for Monday. I had her call my line directly back which of course worked perfectly.

This morning I had to wake Jairus up. I've probably had to do that, oh, never in his entire nine years of life, so I was understandably concerned. He just would not get out of bed, and said his throat hurt. My mind conjured up visions of an injury in his throat from the choking, or the start of aspiration pneumonia but his temp seemed fine. I was all set to keep him at home when suddenly he was hollering from the bathroom that he didn't like the bubbles Afton had left from her baby wash floating in the bathwater as he was trying to get in. Eewy bubbles.

How many of us truly anticipate the level of fear and stress that await us once we become parents.

Not I, said the .


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