Look what Noah did.....

I was feeding Noah his Lasanga through his tube and gave him a small taste. He licked my finger without gagging. After I finished giving him 2ozs. through his tube, I fed him the rest by mouth. He did really well. He even laughed while he was eating. He was so proud of himself.

The Sheaffers

Kings Island Trip

Grandma and Grandpa Bebow went to Kings Island with us. We had a fun spending time with them.

Morgan and Emily at Kings Island waiting for lunch.

We were sitting next to a ride and when the ride was finshing up a big gust of wind would go through. I got this picture just in time to catch the reaction of everyone.

This one of the rides Morgan and Emily went on. To be young again..... I think I would have gotten sick.

Morgan and Emily riding on the Mini Cooper ride.

This is the ride that would push the big gust of wind at us when it came back down.

I've been hoping I could catch Noah sticking his tongue out. I was going through our Kings Island pictures and I cam e across this one. Yeah!!!! Since ABR Noah has been sticking his tongue out past his lips. He has even started to stick it out after he sees us stick ours out. Now for him to blow rasberries.... I can't wait....

We went to Kings Island in July.. For the most part we had a great time. But, there isn't much for Noah to do there. The one ride he can go on (and loves) is the Scooby Doo Haunted Mansion. We got in line and was about to go on it and it broke down. It broke our hearts as well. The girls were so upset that now Noah couldn't ride his favorite ride. He did get to float around in the lazy river for over a hour. He has a really neat life jacket that he can be in the water pretty much on his own. It's so relaxing for him. We also went to all the shows. He loves music as well. Even though he didn't get to do much , Noah still had a fun day. Morgan and Emily went a some roller coasters and some other cool rides. They had a great time.

The Sheaffers

Not Sure......

At this point we aren't sure if we'll be able to afford going to Chicago in August for our next training session. We have about $500. We need about$1600 to pay for the training. That doesn't include our traveling and our stay. We have less than a month to come up with the rest. Most likely it won't happen. In fact I'm sure of it. It upsets me so much that we won't be able to continue with the one thing that is helping Noah so much right now. I'm hoping to continue to try and find ways to raise money so maybe we can go in November. I would love to be able to raise enough to get the machine as well. I also realize we are running out of ways to do that though. What's next? Where do we go from here? Why, when you have a special needs child you have to struggle to provide things for him to give him a better quality of life? I don't get it.....I know this sounds like alot of why me? I'm just really struggling right now..... I can see a better quality of life for Noah but, I can't reach out far enough to grab it. Why does life have to be so hard? I don't know what else to say.........

Susan

Monster Vs. Aliens

Scott had the day off the other day. So we all went to see Monsters vs. Aliens at the dollar theatre. It was a fun family day together. Emily, Morgan and Noah getting ready to watch the movie. I love how Noah can now watch the movie in a regular movie seat.

Happy 4th of July everyone.

The Sheaffers

Monster Bash

Noah and Scott wait for the "drive-in" movie to start Saturday evening.

In the background are John and Mary Bishop, Monster Bash pals.

This is Eddie Curtis. He always has a smile,

and is always ready to go swimming.

Susan and Barb Heiss. Barb was one of the first people

to talk to us at our first Bash, and we've been

friends ever since. Barb was disappointed that

Susan wouldn't be around Sunday evening this year

for their normal get-together. Hopefully next year

it'll work out.

Noah and Melody Stevens. We met her at our 2nd Bash,

and have been close since. She shares our hotel room

every year, and she's a lot of fun to be around.

Scott and Debi Goettel, Rob and Cathy St. James,

and Jerry Goodwin await the start of the Saturday

evening outdoor festivities. They're all part of our

circle of friends at the Bash.

Noah surrounded by Abbott & Costello impersonators, and

their press agent "Scoop." I wish I knew their real names.

They were dead-on with their A&C routines, the best

act there is today. And what great guys they are!

Scott and Don Reese. Don is a "fantastic" comedian, and has

been a friend for a long time. We met at one of the first Bashes

we attended. Scott is waiting for the baby to kick, and

Don is just happy Scott doesn't abide by the restraining order.

Last weekend, Susan, Noah, and I traveled to Butler, PA for the 2009 Monster Bash. It's a classic horror film convention that is geared toward families. We've gone to 10 Bashes now, and have made many, many great friends there.

This year the theme was "Frankenstein", and guests included Donnie Dunagan (Peter Frankenstein in "Son of Frankenstein"), Ron Chaney (grandson of Lon Chaney, Jr.--Frankenstein's monster in "Ghost of Frankenstein"), Gary Conway (the monster in "I Was a Teenage Frankenstein". Also on the guest list was Ricou Browning (the underwater creature in all 3 "Creature from the Black Lagoon" movies), Lou Ferrigno (the Incredible Hulk!!), and many others.

Our stay this year was a bit shorter than normal (we came home Sunday afternoon instead of staying till Monday morning). It was great to be there, but it was a sad time when we had to leave before the show was officially over. We were sad to miss our normal Sunday evening dinner with our Bash circle of friends, and the Sunday night movies we watch together.

The Monster Bash has held auctions in the past to help raise money for Noah's therapy. Monster Kids have big hearts for a good cause, and all at the Bash love Noah dearly. And we love the Bash, the attendees, and the folks behind the show, Ron, Ursula, and Paisley Adams, and the entire Orange Shirt Brigade.

The Sheaffers

Happy and upset at the same time.......

As you read in our earlier post...Noah's assessment went really well. On one hand I'm so happy with Noah's progress and that all our hard working is reaping some rewards. But, on the other hand I'm so upset and just thinking of all this brings me to tears again as I type this.

Let me explain myself...... I have searched high and low the last 11yrs for something that will give Noah a better quality of life. I've have dreamed of Noah being a bit more independent and able to interact with his peers better. To run and play like all the other little boys his age. Instead he sits and watches them run by. When I came across ABR about 2yrs ago I was wondering if it would work for Noah. I hoped and prayed that the success that we saw on the Demo DVD could actually be Noah one day. After doing ABR for the last 6 months we have seen what we call inchstones. It takes alot of inchstones to get the milestones but we are determined to see them someday. When Noah was assesst by Leaonid ( creator of ABR) last week he was shocked how far Noah has progressed that he had a offer for us....... Since Noah is responding to the therapy as well as he is, Leonid wants us to start using the ABR machine. In most cases familes would need to travel 4x a year for training. Starting in November we will start going 2x a year and start using the machine. In the last 3 months we were able to log in 189hrs manually. With the machine and manual together we would be able to log in over 100hrs a week. Sounds pretty good right? It would be wonderful to log that many hours in a week and see more inchstones quicker. I would love to be able to bring the machine home but the only thing that is getting in the way is money. It tears me up inside that we find the one thing that will help Noah the most we can't afford. It's as if I can reach and touch it but am not able to grab it. I can see my dream but I can't make it come true. How fair is that for Noah...... I guess I need to put my faith in God more. If he wants this for Noah he 'll provide it Right?




In order to bring home the machine in November we will need......
$2,265 for the training session in November (plus exspences)
$ 1545 for a deposit on the machine
$600 for the first and second months rental of the machine
$300 a month starting in January 2010 for the rental.
$350 trainers fee
Please pray we can provide this for Noah,

Susan

In the Land of Round Bacon. . .

Well, we made it to Montreal on Wednesday at about noon. We checked into the Ronald McDonald House, settled in, then went immediately to the ABR clinic.
Noah`s evaluation went great! Leonid (creator of the ABR therapy) was very pleased with the progress Noah has shown so far. I think he was surprised, actually. Happily surprised.
We had some extra time today after our session was finished, so what did we do? We went to Wal Mart, of course! It`s reassuring to know that some things never seem to change, and Wal Mart is one of those things (one of the others is McDonald`s, which was inside the Wal Mart, and is where I ate a DOUBLE Big Mac! Am I dreaming or what?!). Everything was pretty much the same as it is at home, but we saw some skateboarding t-shirts in Noah`s size that had sayings printed on them in French. I was afraid to buy any since I didn`t know what they said! Oh well, Noah got a Montreal Canadienne`s t-shirt instead.
We`re here until Saturday. We`ll be leaving right after our session is over at noon. We`re planning on getting as far as Buffalo to spend the night, then driving the last 5 hours on Sunday.
Thanks for checking on Noah, and check back again soon!
Scott
Noah`s dad