Tuesday, May 12, 2009

CHOC days 7 & 8

Happy belated Mother's Day to all the mommies in our lives. I hope you each got to enjoy your day the way you chose to. I spent the day with Brett and Maryam in the one place in the world that I've been dreaming of. Being able to get Maryam into this program is a dream come true. Everyone has been amazing! They all understand how I feel, how Brett feels, and more importantly, how Maryam feels. Its nice being around people who understand and can explain and help me aid Maryam's sensory issues. Its nice having an answer to every feeding question I've ever asked.
We're very fortunate to be here and I realize it more and more daily. Today Maryam's team social worker told me that they meet with a prospective client every Tuesday morning. I did a bit of math in my head. If the program has only been around 5 years and they've only seen about 28 patients they're averaging less than 6 patients a year! We're amazingly fortunate to have been accepted. Obviously they saw something in Maryam that made them think they could help her and they have!
Less than 3 weeks ago Maryam was 100% tube fed, today she's taking in anywhere from 10 ozs to 20 ozs of food and formula a day! Maryam actually hugs her therapists when she sees them!
Yesterday her SLP Jennifer took her to a little rose garden to have her snack in a gazebo. She loved being outside! And her OT Jamie let her have lunch in the Sensory Room staring at the ball out as motivation! And another OT Melina put whipped cream in Maryam's strawberry Pediasure and made an irresistible milk shake! And one of her SLP's Hemma made such an impression that every new person Maryam met that day was "Hemma"!
Maryam still enjoys being here. She watches the big kids play Mario Kart on Wii, she has been painting daily, and she is obsessed with air hockey. She has started asking for food like mashed potatoes, cookies, and spaghetti. And every Tuesday, Thursday, and Sunday evenings there is a live radio broadcast from the lobby (Lolipop Radio) where she runs around dancing with other children. Every time we get off of the elevator on the lobby floor she starts pointing and saying "dance mommy, dance!"
Well, I think that catches you all up! If anybody out there has any questions about anything comment or email me.

Sent from my Verizon Wireless BlackBerry


susanh929 said...

10 to 20 ounces a day! And hugging her therapists! Yeah Maryam! So happy for you guys!

knuts2knit said...

Woohoo!! Love this update! So glad that she is warming up to the therapists so much! Love the whipped cream in the Pediasure! LOL!
((HUGS)) from Ohio. .

Katie said...

I'm so happy for Maryam!

Jen said...

I'm so happy to hear that it sounds like things are going so well! That's awesome news:) Thanks so much for sharing and keeping us updated. Take care!