Saturday, April 4, 2009

Now that I can breathe again...

Aaahhhhh, I can take a moment for a Chase update.

Ok, well, now that we feel close to normal after the benefit (ok, still a little high, but rested) I can fill in on some of the latest news.

The Biggest and Best news remains the benefit. We continue to get donations as the week goes on and can't thank everyone enough for the support. Tonight we are heading over to Basil to look at vans. Bernadette (Chase's service coordinator) has the paperwork on her desk ready for the state to modify a van for his wheelchair. Now all we need is the van itself.

As for the ramp on the front of the building...DENIED...the grade of the front lawn makes it impossible. The only thing possible was to add a front door to our living room, add a 5x5 mini porch, steps down to a 5x5 slab of cement with a mechanical lift...we were told the state MIGHT cover the lift, the porch and the cement. We would have to buy the door and pay for the contractor. We agreed. (Chase may be starting a center based program this fall and to get him out every morning would be awful in the snow with the wheelchair and 9 stairs...) The state came back out this week to look again. They had a meeting Thursday morning. I waited for the phone to ring. It did, with Bernadette's adorable little voice on the other end saying "I have good news", I didn't even know what that meant, LOL. The state approved the whole deal. EVERYTHING...they're even paying for the door!!! They must have thought Chase was extra cute or something!!! (The Landlord also approved this, she said the condition was we have to have it say "Chase's Door" on it somewhere, LOL, we've been here for 9 years. She's going to have a really hard time getting rid of us!)

That helps beyond words.

Chase starts with 2 new therapists this month. We are adding speech and a special instruction teacher. We are running out of things to add.

He was casted yesterday for Dafo's...sounds funny doesn't it? They are his little tiny leg braces. They are so cute! He only has to wear them while doing weight bearing exercises. I got to pick the colors. That made me feel important for a few minutes anyhow.

We found an amazing new neurologist. He came here, to Dent, from Strong last year. He and Chase bonded immediately. He spent well over an hour with us. He told us that Chase is probably 1 in 10 in the world with this condition. He told us we'll have to learn together. He didn't try to pretend he knew more than he did. I really appreciated the way he spoke with us.

Oh, one more thing. Chase suddenly started drinking (high calorie Pediasure) between 28-36 ounces a day about 2 weeks ago so we're waiting to see if it stays that way. Maybe no feeding tube!?!?

Ok, If I think of more I'll be back....

Thank you everyone again. I'm sorry I can't thank everyone individually, we don't even have any way of knowing who makes deposits into the account, which is very hard...Just know that you have all made a HUGE difference!!! THANK YOU!!!!!

1 comment:

  1. YAY!!! for getting the front door, cement and everything else paid for! And.. GO CHASE.. drinking that Pediasure.. keep it up, little buddy! He is just amazing!