Saturday, August 22, 2009

"Someones's in Trouble!"

Andrés is obsessed with adventure. We went to the mall today, a rarity for us, and every time he heard a crying baby he said "Oh no. Someone's in trouble!" and "They're stuck, I have to help them." We really should look into buying him a cape and indulge his sense of imagination. He also found our tennis rackets on Friday. They were hidden in our closet and hadn't seen the light of day since summer of 2006, when I was pregnant with him. So now he's into yet another sport. And finally I have to write that I couldn't bribe him to eat even one bite of chicken tenders. I promised chocolate cake and everything and still no bite. He is amazingly stubborn!

Evan smiled at Dave today, and held it for a while. He looked so cute. He's doing great overall, and we really hope he keeps it up. He loves getting a bath and cries when we lift him out of his little tub. He also sometimes cries when I put him down. I was worried that we'd have to set an alarm for his feeds but we haven't had to, he cries every 2 to 4 hours to eat. And he smells so good, I don't know if it's because he's formula fed but he has that great baby smell that I missed out on the first time...not that you smelled bad Andrés.

But we have something else to worry about now and that is that we don't qualify for fully state funded early intervention, we have to pay $45/hour for his therapies. For the next 5 months he was recommended to receive 45 minutes of physical therapy twice a week. Then at 6 months he's to start occupational therapy, and later, most likely, speech therapy. When you add the cost of a nanny is it even worth it for me to work? God, if we could just win the Mega. I never play but since my OB-GYN told me I should play I did so last Thursday. But of course, no cigar. I couldn't believe it when he told me that Evan was the only baby he'd delivered with Prader Willi Syndrome. He's been doing this for 30 plus years. He's probably delivered thousands of babies.

We have a few doctor appointments coming up in the next few weeks. The first is with the neurologist. It will probably be the last time we see Dr. Sherbany since Evan doesn't need to continue seeing a nerologist but still I'm hoping he sees significant improvement in Evan's suck and tone. His opinion is the one that matters the most to me. He's so smart and intuitive and gives it to you straight so let's see. The next appointment is with the genetecist who's going to test Dave and I for our future probibility of having another baby with PWS. We have tons of questions for her. Let's see how it goes.

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