Monday, May 30, 2011

Pictures to Follow...

Jacob attended an end-of-year carnival at his school on Friday and had a blast in the bouncy house and on the slide. He looked as if he had never been happier in his whole life! A special thanks to the teachers at Bright Ideas who assisted Jacob when climbing into the bouncy house, who held on to him while he bent at the knees and "bounced", who lifted him up to the slide, and who helped him sit and push off down the slide. Kate Russo, Lea Squatrito, and Katie Perugini - you made my night because you did what I would do for him as his Mommy and gave me a moment to experience his joy.

Sunday, May 22, 2011


More words that Jacob has been using spontaneously...

tee - teeth
pay - paste
doht - cold
daah - car
poohn - spoon
bow - bowl
tiht - sit
buuh - book
tair - stairs


The first question I asked when Dr. B told us two years ago that Jacob had a stroke was "Will he be able to talk to us?"

Afterwards, of course, we learned that there are many ways to communicate apart from the spoken word. Jacob has always been able to "talk to us" with gestures, signs, and sounds.

But to hear his voice, to hear him speak. Words. He will control his own world some day.

Monday, May 16, 2011

Out of My Element

I don't know what to make of Jacob's pulmonologist.

When he heals Jacob's lungs... he will be a brilliant doctor.

He is thorough.

The results of two barium swallow studies have shown that Jacob's anatomy is normal. He is not aspirating as a result of eating or drinking.

Jacob will be on acid reflux medication for the next month and then we will follow up with the pulmonologist.

If he does not have acid reflux, then he will have a bronchoscopy.

"Can't you just go in there and get that sh*t out?"

The answer was yes. And then the doctor asked if I was getting out much.

Friday, May 6, 2011


We have a Gymboree birthday party tomorrow afternoon so I was looking forward to Jacob going berzerko again. In preparation, I sang three rounds of happy birthday to him to get him psyched and each time he yelled "YAY" and "MAW". When I picked him up from daycare this afternoon, his teacher Miss Edie asked him to deliver something to me... "Mommy. Mommy. Happy!" She had asked him to say happy mother's day when he gave me a picture for the refrigerator. Perfectly annunciated happy when just this morning he was saying happah. I forgot what Auntie Zinovia called it but it's something about being able to think about what you're saying and how you're saying it. I do model the words for him but Jacob is self-editing because no matter how he says it, I accept it. I validate what he is saying by repeating what he has said and then responding to him. There are still words that I ask him to say the way that I am saying it like milk because he would rather sign the word than say it or he just says a sound with an "m" in it. Just like the word open, we have been working on the word milk since he had his last constraint therapy and couldn't use his right hand to sign for milk. It seems to be the words that we pay little attention to that he tries to approximate. Stubborn.