Tuesday, March 27, 2007

Zack at Kennedy Krieger Institute today

As many of you have read over the years, Zack has some serious food aversions -- he has dealt with Sensory Integration Disorder quite well, but he still has Texture Aversion when it comes to food. So today we had our appointment (finally!) with Kennedy Krieger’s Feeding Clinic today.

VERY long day. We are 70+ miles from Baltimore, so Zack and I headed over a little early to Annapolis to visit our favorite (Barnes and Noble) where he ate a few bites of cheesecake for the very first time. He was fine with it (he does like cream cheese sandwiches, so not too far a leap) until it pissed him off that he couldn't cut it like regular cupcakes. And then that was it. No more cheesecake. He flat out refused it. Sigh.

Rick met us and we drove into Baltimore together. Kennedy Krieger is a specialty hospital for children, dealing with all sorts of behavioral and physical problems. Their lobby made Zack incredibly happy -- full of fun toys and lots of aquariums and a very cool terrarium with brightly colored tropical frogs.

As always, all the doctors were late (by 45 minutes) but once they got started, they kept a good pace. We met with five different specialists, who observed Zack in various setting, interviewed us extensively, physically examined Zack -- all the while, Zack is being terrific, thank God. A speech therapist and occupational therapist met with him as well.

They decided that he is appropriate for and qualifies for the Outpatient Program. This is an intensive program, 6-8 weeks long, where he has all his meals at the hospital (Monday-Friday), and gets additional OT, speech therapy to help his lower jaw muscles, etc. This means arriving in Baltimore around 8am or so, and not leaving until after 4pm. I must be with him at all times, although there will be times when I'll be behind the observation window, and times when I can drop him in the supervised play area to get a bite to eat and maybe cry in the corner.

The good news is, they feel they can fix it. They also feel there is nothing physically wrong (as in gastro-intestinally). He's very stubborn, and they said he won't be easy to break, but they feel they can do it.

The bad news is, it could be six months before they have a spot for him. And that means he could miss the beginning of this new day school we have him signed up for. I hate him missing "normal" things. He missed a lot of preschool his first year in because of speech therapy twice a week. But I do know this is what has to be done for him to have a normal, healthy life.

I'm just exhausted, both mentally and physically. I am glad that he's going to get help, and glad that I now know it wasn't me that did something wrong as a mother. Everything they asked us, ("did you try this? Did you try that?") we'd tried, over and over.

This will likely mean a hiatus on the jewelry business because I don't know how well I will be able to keep up during that time. I suppose once we get our routine down, I can take chain maille or bead crochet or something like that in with me to work on in fits and starts. And I will be home by 6pm, so can potentially get work done then. Right now that doesn't really matter, I'm just talking out loud -- the more things I have to plan sometimes the better I cope. If I focus too much on "oh my god they are going to hold a spoon in front of his face for an hour while he screams", then I panic. So I don't mean that to sound like I'm an ungrateful and selfish mother.

In the meantime, we just keep doing what we're doing. If there is some miracle between now and intake time, I'd be praising the stars. But that's highly doubtful.

The other thing that makes me sad is how few people can afford this, if they don't have insurance. Our copay today was 37.00, but they are billing insurance $475. I shudder to think what the inpatient is going to be. And compared to many of the children who go to KKI, Zack has so little "wrong" with him, and at least he has a cure. Some of those poor kids, they go for years, with no cure, just coping.

Sorry this is so long. I'm just a bundle of nerves and exhaustion right now.

1 comment:

  1. Anonymous10:46 PM

    Hi I visited KKI two days ago for the same thing. We live in Ohio so we have to stay in a hotel for eight weeks and I have two other children and a husband I won't see for eight weeks. We were also told 6 months so I am assuming we will go in september. Good luck to you!!!


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