Wednesday, April 29, 2009

Mini Update

I have to show off the fact that Chase has recently discovered...hands and knees! Not bad for no cerebellum!!!
I also am quite pleased, he's turning into quite the musician!

I should have news today about the porch/door/wheelchair lift because yesterday was the rescheduled day with the state, architect and Chase's coordinator...but this time the architect canceled because it was raining...this is proof, she's the Wicked Witch!!!

Next week he has another hearing test. I'm trying to think if we have any big appointments in May...Ok, here's the lineup:
May-Hematology to check coagulation factors and to find out why his carbon dioxide levels and BUN levels have been off so often (causing his frequent bouts of dehydration)
June-Neurology-back to discuss any options, ideas, any genetics testing they may want to consider etc...
Developmental Clinic-They are overseeing all of this...God Bless them...I couldn't do it...Let's hope he's gained some weight by then and we don't have to discuss feeding tubes...
July-Ophthalmology-He's seeing us back after 3 months instead of the usual 6. I think we'll be discussing surgery to straighten out his eyes! YAY!!! He wouldn't be doing this if he weren't able to see well at all. I am very excited about this. I would be so thrilled to take a head on photograph without it coming out cross-eyed. Not that he isn't gorgeous, of course...

On a non medical exciting note I have to add that Alex is getting ready for a big trip with my parents to D.C. for a week! He's leaving May 11th and is going to have SUCH an adventure!!! He is so excited.

Chase is fussy, I'll give more details soon.


Sunday, April 19, 2009

The "Chasemobile"!

Thanks to all of you...

We brought home our new baby, a Nautical Blue Toyota Sienna, on Friday. I will have pictures soon. I have been too busy driving it!

We should get to enjoy it for about a month before it gets shipped to Michigan for 8 weeks for the modifications. I'm going to miss it! I want to say once more how we could never have gotten the quality we did without your help. We had looked at MANY vans, but with the states requirements, and needing to keep the van a minimum of 7 years...we are thrilled! The 2nd and 3rd rows of seats will be pulled right out, the 2nd row bucket seats will be replaced with narrower "jump" seats, putting Alex closer to the window...The Sienna comes equipped with side curtain airbags along the entire length of the van. This was the selling point.

One big project just that front door and lift to go and I think things will "kind of" quiet down for a while!

Oh, one quick note. I was talking about the kindness of strangers recently. You know we switched neurologists just a few weeks ago. The assistant, Steve, called me two weeks ago and asked if we would mind if they had a dress down day for Chase! He called us back last week and asked if we could pick up the check, Dave stopped down during the day and picked up a check for $322.00...are people amazing or what??? This office is incredible. I told you there was something that clicked as soon as we went in. Steve told Dave that Dr. Q. is working hard for us so when we go back next month we have something to work toward, maybe something to explore.

Baby steps...


Sunday, April 12, 2009


I hope everyone is having beautiful weather and a wonderful day with family and friends! We will be going to my parents house at 1:00 for the best chocolate, great food, and I'm sure plenty of laughs!

We had a "light" Easter at home. Alex had a basket with some candy, a Blockbuster gift card, some Xbox Live points (don't ask, I don't get it either) and granola bars I stole out of the cupboard last night to take up space, LOL. Chase went empty don't feel bad. He can't eat the candy, he already has 4 or 5 stuffed bunnies and has a zillion toys....AND....I think he's getting a giant cobalt blue egg...

We put a deposit on a Toyota Sienna yesterday (it really does look like a sparkly cobalt blue egg!). (Insert Heather's HUGE smile here) We brought it home overnight Friday to really think about it. Took it back yesterday to talk about terms...and have to wait til tomorrow to see if they can get it down to the payment we are insisting on(thanks to a mega down payment made possible by all of our friends and family as well as perfect strangers, there is NO way we'd even be talking about this without any of you!). I never thought we'd find a Toyota, anywhere near our price range, within the miles and years to satisfy the states limits to be approved for the wheelchair modifications. IF we get it, after the paperwork goes through (that takes about a month) Main Mobility then ships it off to Michigan where it lives for 2 months while having it's floor lowered, a ramp added to the back, the 2nd and 3rd row seats ripped out, jump seats added to the second row and a place for Chase's wheelchair in between the jump seats ($17,000 of modifications). Now, one of the reasons we were sold on the Sienna...Side curtain air bags the entire length of the van. Alex will be much closer to the window in the jump seat so we feel MUCH better with this feature. It's going to be hard getting a van and then sending it away for 8 weeks...but so worth it in the end.

The day after tomorrow is the big day the Man from the State department, the Architect from UB and a representative from Early Intervention come to plan out the lift, stairs, door, landing etc. for the living room.

It seems like maybe some progress could be made this week. Keep your fingers crossed and say some prayers!

Have a wonderful Bunny day, don't get sick on chocolate!

Love, Heather

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!!!!!