Yeah, it really has been a year.

11 specialists

6 weeks on oxygen

6 months in a helmet

4 days in the hospital

3 months on thickened fluids

1 surgery

1/2 million prods, pokes, doctor visits, and moments of worry

All of that put together can't dampen to the elation I feel when I hold him close with his soft, helmet-free and well-rounded head touching my skin. Or when he signs something so definitively I know for once exactly what he's thinking. Or when his whole face explodes into a smile because I walked into his line of sight. Or we laugh at each other laughing for 5 minutes straight.

Motivation

Mermaid is motivated by food. She was particularly non-compliant at a recent S.I. session held during the witching hour of 4-5pm. So, I pulled out a couple of marshmallows. I'm trying to get rid of this "red light food" anyway. Ms. SI held a marshmallow next to each cup she wanted stacked or peg she wanted put in place. When Mermaid did the task a marshmallow would instantly reward her action. Ms. SI was so excited about the response she declared she would bring treats every week to prompt Mermaid's behavior. She told me of research on Long Island where kids with Downs will hold tongue depressor's weighted with nickles between their lips to eliminate the socially unacceptable slack jaw. If the child continues for a certain time limit, he/she gets to keep the nickles. Is this another weird indignity my daughter will have to endure?

Now I'm in a quandary. I know Mermaid has a slow metabolism and an increased risk for obesity and diabetes. Pediatricians, dietitians and many psychologists agree that food should not be used as a reward. I acknowledge bribes as an occasional fact of life, but can I purposely use it as an ongoing behavior modification tool? I don't think so. I suggested grapes or slices of tomato as a reward compromise, but Ms. SI thinks goldfish and fruit snacks will be the best. They're certainly tidier. I'm putting a pin in it. In the meantime, I'll let Ms. SI use bribes during her weekly session but I won't. Well...I'll make an exception and use the remaining marshmallows to get Torpedo's into his button-up collared shirt on Sunday mornings! ;)

The Boy's Photo Journal

I was a fish in my other life.

What? Well, how do you sleep?!

Coastal gourmet.

I must be the treat.

All dressed up.

Too tired to eat.

Leaps and Bounds

The Boy is on fire. ON FIRE.

He is using the potty. Every time I put him on the potty, he makes something, and he waives 'bye-bye' when we flush. He rarely poops in his diaper. His diaper is often dry when I take him to use the bathroom.

He just cut his first tooth.
He is going to sleep on his own, instead of having to be rocked.
He is eating solid food in pieces, not just pureed (though he won't touch the wet foods... he'll only pick up the puffs himself).
And he just did his first sign.

Yes, that's right. His first word. And he really knows what it means. Ready for it? The Boy's first word is "all done". He used it first to say he was done eating. Then that he was done sitting by himself, and done laying down, and done eating again. Now that he's been using it for a couple of days, he just likes to play with the wrist movement, or maybe he just does it over and over again because it's his whole vocabulary so far.

When he 'said' it the first time, I thought I was going to implode, or spontaneously combust, or disintegrate or something. It just seemed like too much. Too much pride, too much joy, too much relief. I'm so crazy proud of my amazing, genius, twenty-wonder.

Company "d"

Company "d"

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The Mystery Continues

The Boy (aka Captain Handsome Pants) has no food allergies whatsoever. Milk, wheat, gluten, cinnamon... he's not allergic to any of it. So... uh, um... I'm not really sure where to go from here.

I'm switching body wash. That's done. Maybe that's what caused the rash all along. But this is about more than just the rash now. When I went off dairy, I noticed an increase in my energy levels, and a bizarre side-affect with my hormones (who ever heard of a 7 day cycle?). So, I'm not that anxious to dive back into dairy land, and any milk I do have from here on out will probably be organic (or at least hormone-free). And when I went off gluten (much harder than going dairy-free), it only took a couple of days to see an improvement in The Boy. He was smiley again. I mean, smiling at every glance and word. Happy. Not just quiet. And for the first time in months and months and months (like 6 months), he was pooping on his own. Hurray! Then the Celiac test came back negative, so I went back on bread, and he was plugged up within a day or two. *sigh* Thank goodness for my awesome infant massage skills. I have put them to good use. Back off gluten again, and The Boy is moving things like a pro.

So what's next? I'm still pursuing things with the allergist to figure out the rash (namely the chemicals from the body wash I was using). And she said that The Boy could have an intolerance to gluten, though not an allergy in the academic/clinical sense of the word. What the heck does that mean? I think I need to find a GI.

In good news, The Boy is using the potty already. He has needed so much help with his bowels, he's not in the habit of going with his diaper on. His OT said I should start putting him on the potty when I could tell he needed to go, and it's paid off. He's even started peeing on the potty, too. He still wets his diapers, but almost anytime I put him on the potty, he makes something. Then I let him watch it flush down while we waive 'bye'. It feels pretty darn good to be advanced on something.

Mermaid gets her legs

Two weeks ago Mermaid took her first unassisted steps. There were at least four witnesses screaming excitedly for me to turn around. I missed it, twice! She spent the next ten days asserting her independence by lying on her back. Now we are practicing walking like two dancers. We face each other and hold one hand. Mermaid is skeptical of this arrangement and frequently holds her ground waiting for my other hand or she lunges forward for a body hold. Still, Mermaid is a natural leader pushing me backwards all around the apartment. It's fun to see where she wants to go.

The physical therapist has been telling me for months, "She'll be walking soon." I can't get too hung up on that kind of language. Progress moves a half step forward and a quarter step back. I trust that she'll get there in her own good time. I should give myself and my other kids that same kind of leeway. Meanwhile, Mermaid crawls like she's swimming. I think she's growing up too fast and My Hero is grateful to have a child who is mile-stoning at a rate that he can track. What's next? Flying?!