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More Good News/Bad News -- Originally Published February 16, 2008

Wednesday, August 18, 2010

So many people ask me every day, "How is Michael. Is he getting better?" We often find ourselves at a loss on how to answer that question, because ... well, because its COMPLICATED! It really is "two steps forward, one step back." Or, as we like to laugh about it, "Good news, bad news." Let me give you a snapshot.

Good news -- Michael has learned to sit up all by himself.
Bad news -- we have pretty much confirmed that he has a small, pinhead size fistula (hole) in his palate where the soft and hard palates transition.

Good news -- Michael now loves his bottle and wants to suck on it all the time.
Bad news -- Michael still won't swallow, and all the milk runs down the front of him.

Good news -- we've got meal times down to "about an hour."
Bad news -- Michael tries to throw up at least twice at every meal.

Good news -- Michael is learning sign language. He said, "Daddy" today, one day after we first showed him the sign.
Bad news -- Michael developed his own sign first. We think it means, "help me I can't breathe." Or possibly, "Get this (*&^ Passy-Muir Valve OFF me!" (He uses it in both cases.)

Good news -- Michael loves the cats and the cats tolerate Michael.
Bad news -- the cats are so desperate for attention that they will allow Michael to pound on their heads and kick them because it is the closest thing to a good pet they've seen in weeks.

Good news -- Michael is up to half an hour on his PMV, with regularity.
Bad news -- he only does it when Bunnytown is on.

Good news -- Bunnytown is the least offensive children's show on TV.
Bad news -- there are only 8 episodes.

Good news -- Michael has started "helping" getting his clothes on.
Bad news -- Michael likes to put both legs in the same side of the pants.

Good news -- Michael likes to help wipe his face off at meals.
Bad news -- he doesn't use a cloth.

Good news -- Michael loves to talk and make sounds.
Bad news -- he won't do it when the PMV is on.

Good news -- Michael's O2 levels are very good when he is on his PMV.
Bad news -- Michael doesn't seem to be able to breathe during the few seconds his trach is removed when we change it each week.

Good news -- our insurance company is very generous in the amount of "HME" valves it lets us have each month (the covers for his trach that let him be free from his friend "blue hose").
Bad news -- our medical supply company is chronically backordered, so we no longer get what we order.

Good news -- Michael is really smart and has decided that he is going to focus on learning to talk.
Bad news -- he still has that trach, and we wish he would have focused on learning to crawl first!

Good news -- Michael is so focused on communication that he needs to learn sign language before he invents his own language.
Bad news -- our favorite sign language for kids book focuses on food as a motivating factor. (Don't worry, we're working around that just fine.)

Now, to wrap up some long overdue things. The surprise "special thanks" this week goes to ... Aunt Eve. (I can here it now. "Me, what did I do? I haven't even spoken to them since Christmas!) Well, Christmas it was, Aunt Eve. The farm you and the Uncle bought has proven to be this month's most-favorite toy. I think of you every time the "spotted cow goes moo, and horse is brown and neighs." But, it isn't about me, any more then it was about my sister Kim when I sent her kids drums for Christmas. It's about the kids.

As soon as we get back from Las Vegas, we have PLANS that we haven't told anybody (even the people who need to know). We think Michael made great strides when he met friend his little friend who is a few months older, so we are hoping to schedule some play dates with thatfriend again, and with another little boy "N" who also has a trach (now that neither "N" or Michael have any tests planned for March!)

Last -- best wishes to friend "N" on getting good sleep test results back. We're pulling for ya, kid!

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