Saturday, April 21, 2007


I dare you to read this without bawling. I couldn't.

Q has an appointment Monday with the children's hospital feeding clinic OT. I'll leave here at 7:45 to get him to his regular OT, then drive straight from there to his 10:30 appointment before returning to do a very fast, full school day and (please make the weather nice) haul the crowd to a half-price mini-golf "field trip." The local mini-golf place charges half their regular price on Mondays and Tuesdays--if you bring a can of food per person to benefit the local food bank. Who can pass that up?

Three people at church today asked me how Q's doing. Each answer got more garbled, until at the last, I wanted to say something like, "You know, I think he's good. I mean, we just keep going on in this. But I have no idea how to describe to you how tired I am, how fast I have to run to hit all the appointments every week for five busy kids, or how just plain weird it is to have four typically developing children and then not even know where to look to see what development Q 'should' be having." But I didn't.

I tried to explain his feeding issues, his gagging issues, his not sitting or rolling or talking. They listened, were sweet and genuine and so supportive and complimentary. But there's just too much to communicate about a little guy whose eyelashes break your heart and wrap you around his little, inappropriately toned pinky, and isn't anything like what a mama would have expected to have in her precious, cooing, burbly last little duck. There's so much that's not "normal" I mostly don't know where to start. And when I do, get started, that is, it hits me all over again how much there is to tell, especially if I'm trying to be brief. I mean, what do I leave out? It's all pertinent on some level, but does anyone get the difference between what is and what isn't? When someone asks how he's doing and I say, with tremendous pride, "He took the spoon with both hands as I was feeding him last week," do they stand there and think to themselves, "How old is this kid again? What is it they usually do at this age?"

I kinda hate the whole "What seems to be the problem?" thing in offices/clinics/therapy places, because what they really need is the whole story from the beginning, but who has that kind of time? So I sort of do a hit and miss history, trying to anticipate the particular areas of interests and answer their questions from there. I hope it works. Maybe they're so overwhelmed with info that they forget to tell me to shut up? Heh.

In other news, the chicken tractor is fulfilling it's duty. I wish I could post a picture, but then I'd have to know how to get the dadgum computer to recognize the compact flash card when it's plugged into the slot. Since I've no idea how to do that, you'll just have to be patient. Or, you could post a comment that would help me? Please?

Another thing you'd like to see a picture of is Q's "little room", made of PVC pipe, Plexiglas, pegboard and whatever toys we attach to hold his interest. A nice man and his wife came and built it, per my modification requests based on the one we had borrowed from the SpEd teacher. It's super. He likes to sit up in it, bolstered by a rolled towel and a boppy pillow and held loosely for stability. He really likes the pegboard and bats at stuff hung from the "ceiling". It's really quite ingenious.

I guess that's it for now. Oh yeah--there's a court date on Monday morning. The whole thing is silly beyond words, but your thoughts and prayers, are, as always, craved.

I'll be back to wrap up other things later.



Remudamom said...

All I can say is bless your heart and you are in my prayers.

Needleroozer said...

About the "What seems to be the problem?" comment:
When I was dealing non-stop with health practitioners, I took the time to write up a one page description document, complete with symptoms, time frames, comments and diagnosis from other Dr.s, complete with their contact info. I carried it around in a file folder in my car, and was able to have it at the ready for anyone who needed it.
Would something like that be useful in your and Q's situation?

Thinking thoughts of peace and patience for you, as always.

Kelli in TN said...

If your card slot is not recognizing your memory card it might be the driver. Depending on what brand of computer you have, you might be able to download and reinstall the driver from their website or you might have the driver on a disk that came with your computer. In the meantime could you use a usb cord so we can see the chicken tractor and perhaps Q's chubby cheeks?

You are always in my prayers.
Kelli in TN

Old Dominion Heather said...

You and Q are always in our prayers. My guys ask about him regularly.

I know what you mean about information overload. We judge how much the other person really wants to now, but I don't know that I have ever told someone other than a doctor (or even them) everything.

I wish I were closer. I'll be praying on Monday.