Sunday, May 31, 2009

We are still alive!

My life has been crazy busy as of late...unfortunately, tending Evan's blog has fallen to the wayside. Here is an update of recent happenings, encyclopedia style.

ASL Class. The ASL class Jeremy and I have been taking since March ends tomorrow night. Unlike previous classes, our teacher is Deaf, and this gave us more insight on Deaf culture. We also learned more about ASL word order, which is what I have found the biggest barrier to becoming a proficient signer. The last class is a fun night, with games. We're bringing Evan with us to meet the class (Grandma and Grandpa Key usually watch him for us).

Baths. Evan still freaks out if you look like you're even thinking about putting him in by himself. But as long as he's in there with one of us, he does enjoy splashing around.

Cochlear Implant. Still haven't made any decisions here. I think we will most likely end up waiting another year, to give Evan some more time to outgrow frequent ear infections. This past winter he did really well. Another major factor is unfortunately our insurance--I have a suspicion the insurance company will cry "exclusion" and will not cover any of the cost of a CI. We do have financial assistance at Children's, but with all the budget cuts I don't feel good about asking for a non-life-threatening procedure out of the uncompensated care fund (a CI is around $40 K).

Doors. Still hasn't quite figured out turning a doorknob, but can push or pull open a door that's not latched (or locked) easily. No longer the barriers they used to be.

Getting Dressed. Evan has definite preferences about clothes and shoes now. He prefers red or orange shirts (sometimes to the point that you can't get a shirt of a different color on him). Blue jeans are the pants of choice, even if it's hot enough for shorts. If he happens to find a pair of jeans somewhere--a pile of clean laundry on the bed, or dirty ones from yesterday--he'll bring them to you to put on him. Sometimes, he even takes off his shorts first. I'm still not used to seeing him barreling down the hall with a pair of pants in hand. He also is very picky about shoes. He has a pair of brown ones he will wear--try to put any other pair on and it's fit time...

Insurance. Grrrrr...I shouldn't even start on this one, because I'm so angry about it. Our insurance company suddenly decided this year that Evan's therapy visits are not a covered benefit. Their reasoning is that Evan requires therapy because of a neurodevelopmental problem, and it's not "rehabilitative." That's right--someone can have a stroke because they won't control their blood pressure or they smoked for 30 years and speech or physical therapy for them is considered reabilitative; the insurance company will pay for 20 visits a year. But because Evan was born with delays that are classified as being neurodevelopmental, this falls under an exclusion in the policy. Never mind the insurance company has known about his diagnosis all along, and never mind they paid for his 20 therapy visits for the previous three years. I was informed I have the right to appeal this decision, which I plan to. Because I have all this spare time right now that I'd love to fill with writing letters to insurance companies. I understand things are tight and they are trying to save money, but we have a contract...they need to hold up their end of it.

Language. Kat, Evan's Teacher of the Deaf evaluated him last month. Evan's delays are significant, and the upside is that documenting them will help us get the services he needs on his IEP. But it's really hard to read on paper that your 3 1/2 year old has the expressive language level of a 10 month old baby and the receptive level of a 7 month old. What is even harder to read is that's a regression since the time he was tested a year ago. It's possible he had a really good day the first time he was tested, or a lousy day this time...but still.

Messes. Evan is very proficient at creating these now! New goal: cleaning them up.

Preschool. Evan has 2 more weeks, and then out for the summer. He has made some amazing progress this year. He hangs up his back pack in his cubby! Evan's aid, Sherry, absolutely loves him and is busy learning ASL. We are very fortunate that there's never been a shortage of good aids for Evan. Sherry is interested in working with him long term, and Evan really works hard for her.

Quick. I really don't know when this happened. It seemed like forever Evan was crawling and we were wishing for the day he would start walking. Now he runs--fast. If I turn my back for a second, he's off.

Swings. As I type, Jeremy is working on Evan's swing set in the back yard. We drove to Kirkland yesterday in search of a slide--we did find one. Unfortunately, Evan doesn't really seem to like slides right now. We tried to put him down a couple times, and he put the brakes on and in general did not seem so happy about going down. So we got him a tire swing instead--hopefully he will enjoy this one as much as the one at preschool. So far he is less than thrilled with his swing being in the back yard now. This boy does not like change (or grass...).

Twirling. This is so darn cute, but I can't catch it on video (every time he see the camera, Evan stops what he's doing to grab it from me). When he gets excited, Evan loves to dance around in circles--usually while looking up at the ceiling. I'm amazed he doesn't fall. He never seems to get dizzy!

Water. We broke out the Elmo sprinkler last weekend, and Evan had fun in the mist. Looking forward to some trips to the city pool, and if all goes well, to the water park in Moses Lake.

7 comments:

Leslie, Arlin and Katie Kauffman said...

Evan, so fun to read about all you are doing now! You are making GREAT progress--and seem to be having a lot of fun doing it! :-)

amy and mighty max said...

thanks for all the updates! :)

Anonymous said...

Wow! That more than made up for the lack of time to keep everyone posted on Evan's doings. We know too well how fast that boy can disappear. Not to worry, someday when you least expect it he will start signing when he is ready, just like when we waited and waited for the day he would walk, and now look at him running. It seems to me that we waited a long time for Sarah to start talking and when she did, well the rest is history.
Love, Grandma Key,

Eva Nichole said...

Sounds like you are all quit busy. I am glad most things are going well.
I know how you feel about being told your child communicates at the level of a 10 month old. I am right there with you sister.
I hope everything keeps going well and you have a great summer.
Hugs,
Crystal and Eva

Connor's Mom said...

Wow! Sounds like big things have been happening!

I wouldn't put to much stock in those tests, by the way. They're really subjective and pretty inaccurate, in my opinion. Just look on the bright side-- the lower he scores, the more services he qualifies for.

I'm with you on the insurance company. Fight it!

~Jess

Catherine said...

So much to catch up on here. The tests never do our kids justice do they and seem intent to depress us. I remember Reu got a 1 for gross motor out of 10. The environment is always wrong too. Love Cx

Jesse James said...

I read this post and could hardly believe the progress Evan has made. I would really like to see him one of these days...

Sharon and I finally got our first foster child. What an adventure! Still miss seeing Evan and Jeremy every day, but glad to hear he's got a good aide.

Call sometime... we'd love to have you guys over for dinner. 509-925-1737

~Jess