Friday, January 23, 2009

Working so hard to find his voice...

Elijah using his Dynavox to tell us what he needs. 
Elijah works with his  Gillette speech therapist as he learns to speak. He also works with an Occupational Therapist who is helping us to help Elijah to learn to tolerate eating food by mouth. It is a long process and takes alot of patience (and the ability to eat Chef Boyardee macaroni, marshmallows and cheese puffs at 9:30 in the morning for all involved!) We have the best therapists at Gillette!

Elijah has a speech disability called apraxia. The condition makes it very difficult for Elijah to form the words he wants to say. Elijah is 3 years old and does not talk. He has three words--Momma, Dada, and Baby... He does communicate with us in many ways...sign language and he uses a dynavox speech device to tell us many things but he has extreme difficulty speaking. 
I had no idea how painful it would be to watch this beautiful little boy try so hard to form words with his mouth. Intently he watches your mouth as you form each syllable of a word and tries to repeat it. He is building on his vocabulary and had some success today with "yes", "no" and "bus." But with each success, there is the reality that Elijah must watch each word formed on another person's lips hundreds of times before he is able to say the word independently. 

Working with Elijah to learn things that other kids just do, like eating and talking, I find myself feeling the most opposite of emotions all at one time--I rarely have ever felt such joy at celebrating the success I see with Elijah and rarely have I had such aching for a little boy who has to work so hard to succeed. I want to make it "all better" for him, and I can't--no matter how hard I try. 

Elijah is incredibly smart. He knows his alphabet, numbers to 100, shapes, can read some sight words and can whip anyone in a game of carpetball. And yet, he has some big gaps in his understanding of basic concepts. One thing is certain with Elijah, he is a picture of extremes. He has so much to say and yet is so silent right now. He is so smart and yet struggles so much to learn basic things. He is such a little guy and yet so big with personality. He is so full of life and yet so very fragile. He is so easy to love....




The Countdown begins...



Brennan keep Diego busy and out of trouble~!

Elijah is excited! Can you tell?!




Now that most everyone is over the flu, we are starting to be able to concentrate on getting ready for Elijah's Make a Wish trip. We are leaving in 4 days. At least it has been nice out and the kids can go out and play and get their extra energy out. But, now it is time for me to get serious about getting out the door on Tuesday morning at 4:30 am! We have oxygen, medical supplies for 2 children, 30 medications to pack with proper documentation attached, all of our stuff for 12 people. Make a Wish has us flying on two seperate airlines! Elijah, Sarah (Elijah's Nurse) and myself are going on a Northwest flight because they allow oxygen on the flight, while Mark along with the 7 other kids and Nancy, Aaron's PCA, are flying on a Sun Country flight. I think I got the longer end of that stick!

We are going to be busy around here. We are so thankful for Make a Wish and all of those who support them. They are making this trip possible. Believe me, there is no way we would ever be able to afford this or be able to orchestrate all the details that have to be in place to take a crowd like us to Disneyworld. We will be staying at Give Kids the World, a resort specifically for families who are taking wish trips. We have tickets to Disney, Universal and Sea World. Make A Wish has arranged to have alot of the medical equipment delivered to our destination so that we don't need to transport it, they have arranged a bus limo to pick us up on Tuesday morning and they provide help at the airport both here and in Orlando. It is truly amazing how much they have assisted us in getting all the details in place.

We will keep you updated on all the details!

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