Sunday, June 29, 2008

Kaitlyn and Ashton

We have two awesome kids - Kaitlyn and Ashton. Kaitlyn is 7 and will be in 2nd grade this year. She is hearing impaired, although I hate putting it that way because I feel like I'm defining her by a physical trait rather than by who she is. But "she has hearing impairment" sounds silly, so there you have it. She attends the School for the Deaf, but this is her last year there because she is doing so well she doesn't qualify for the school anymore. This is wonderful and amazing, especially considering the other issues she has. She has (not IS) a very rare chromosomal abnormality called 18Q-. This causes many different issues, and when she was diagnosed we were told that she would most likely never speak more than a small handful of words, and may not walk until she was 4 or 5. We were told to expect her to be moderately to severely mentally retarded. Our doctors and geneticists were kind but realistic, and told us to hope for the best but be prepared for the worst.

Fast forward several years, and the Kaitlyn we see now is nothing like we were told to expect. She began talking at 12 months, walking at 14 months, and is generally a happy, hyper, smart, loving 7 year old. Other than some issues with low muscle tone (and the resulting abysmal handwriting), her fine and gross motor skills are pretty much on the mark with a typical kid. Her speech is delayed a bit, but she is speaking so well that she is only one standard deviation below normal. That is hard to explain, but basically means she is one to two years behind normal in her receptive and expressive language. That is a far cry from the "small handful" of words we were told to expect. In fact, comparing her to deaf children, she is above the 50th percentile. In her end-of-year testing last year she tested at or above grade level in EVERY SINGLE SUBJECT. We are so amazed by our little girl, and grateful she is doing so much better than we were told to expect.

The cause of her deafness is atretic ear canals, which basically means that she was born without ear canals. They end in a blind pouch right after the outer ear. In January 0f 2007, Dr. Clough Shelton at the University of Utah Hospital corrected her left ear and created an ear canal. The hearing in that ear hasn't been fantastic, and we're not sure why. We were hoping she wouldn't need a hearing aid anymore but it looks like she may. Two weeks ago Dr. Shelton created an ear canal in her right ear, and we are currently in recovery phase. He said that her anatomy was very favorable and the surgery couldn't have gone better, so we're very hopeful. She will have the packing removed in another two weeks so we'll have a better idea what her hearing is then.

She also has a condition called midface hypoplasia, which basically means that the middle part of her face (her maxilla) isn't growing. Her forehead and mandible are growing normally, so she has a serious underbite that is getting worse. I'll write more on this later. She is also growth hormone deficient and requires two shots a day to help her grow. She has severe ADHD and is socially delayed.

She likes reading, swimming (which she can't do this summer because of her surgery - bummer), playing GameCube, playing with friends, going to Grandma's house, learning about superheroes (Daddy is happy about that one), and being outside. She is a precious, loving girl and we adore her.

Ashton is 4 and will be going to preschool next year at the Carmen B. Pingree Center for Children with Autism. He was diagnosed with PDD-NOS about 2 years ago and rediagnosed with high-functioning autism earlier this year. I may be in denial, but sometimes I wonder if the people who diagnosed him are crazy. He definitely has some quirks and I can see some autistic tendencies, but he is so unlike what I consider to be a typically autistic kid that I just have a hard time seeing him in that category. He is very affectionate and loves to hug and snuggle. He is smart and inquisitive and wants to learn as much as he can about the world around him. He loves playing with his sister and goes along with whatever superhero she is obsessing over. He likes playing with other kids, although he has a hard time knowing how to play appropriately. He has a tough time with transition and doesn't handle change very well. He also makes up the funniest words and phrases. Those last things are definitely characteristics of autism, but I don't know if that makes him autistic. But he qualifies for the preschool next year, so we figure it can't hurt and will hopefully help him learn coping skills for the challenges he will have in public school. It's a bummer having both of your kids go to special schools but I guess we just have to be grateful that the schools are available to us. If they had been born 20 years ago, or even 10 years ago, they wouldn't have had these opportunities.

He likes his blanket, Thomas the Tank Engine, Crabby Patties (hamburgers), playing in water, being outside, listening to stories, playing with his sister, playing with his cousin Mason (who lives too far away - sniff sniff), climbing on anything he can find, and singing Spider Pig (thanks to Daddy for that one).

So that's our family. We would have liked to have more children, but because of bizarre medical issues we can't have more. We made two attempts at in-vitro fertilization and neither worked, so we are done. Our family is not what we expected it to be and sometimes that is difficult. But the joys that come from raising Kaitlyn and Ashton are much greater than the difficulties, and we get to have experiences that parents of typical kids never get. We would not have chosen this for our children or our family, but we are so grateful for the children we have and love them more than we ever thought possible.

Wow. Two super long posts. Hopefully my next posts won't be quite so involved!

4 comments:

Eric said...

Blah blah blah. Your blog is long.

Still, well done.

Handsome Kenley

PS. Put a link on your blog to my blog so people can get something...er....can read something...DIFFERENT, if they need to, I mean WANT to, after reading yours...

Kelly said...

Man, I hope that Eric is your friend, 'cause if not, he's rotten!

"Hey Eric, tell me...what do you REALLY think...!

Okay, enough of that! Hey Steph, it's your cousin here in Burbank! Cool that you're blogging. I've got a plant blog, that would probably really bore the pants off of Eric and you! Check it out if you want. Periodically I post something about my family...hee-hee! You've got your hands full! Are you really planning to run a marathon? Wow! I'm impressed!

Kelly

Jenalee said...

Eric is a dollup of a punk. I found your blog really interesting. I made Eric take all the calls at the answering service while I read it. I am looking forward to hearing more about your family, and maybe seeing a picture or two???

luvmy5sprouts said...

Yeah, Steph...you're offically a blogger now. I like long posts, so keep them up. Call me and I'll help you post some pictures.