Thursday, March 29, 2007

What's been going on?

Ethan and Grandpa

We spent our spring break in Virginia with Grandpa and Grandma. A good time was had by all, and as usual, saying goodbye was hard to do. Heck, it's hard to leave Grandma and Grandpa Innis too, and they only live 45 minutes away!

This week has been one of extremes. Ethan and I spent 5 hours traveling on Monday, then the following morning we drove one hour each way to see his occupational therapist. She is the newest professional in his life and we like her very much. Her goal is to help him with his oral aversions and tactile defensiveness. She's going to help us get Ethan eating!

Then we came home and relaxed for a few hours before leaving for Cincinnati, a 2.5 hour drive each way. Needless to say, Ethan is sick of looking at the back of my head.

We met with a very experienced speech therapist that evaluated Ethan for possible verbal apraxia. He definitely displays many early signs of this disorder, yet what we are seeing could be somehow tied into his sensory issues. It's too early for a diagnosis, but she was very interested in following his case and loved the idea of getting him into a speech therapy program where he is working with an experienced professional and not a graduate student. This summer we'll be pulling Ethan out of Ohio University and driving to Columbus once a week (1.5 hour each way! Yay!) to work with a woman who has experience with cochlear implanted toddlers.

We're suffering around here from living in the middle of nowhere syndrome. The University cannot meet our needs on any level. This summer we'll also be leaving the university physical therapy clinic for a place in Marietta that can provide one on one. That will be nice because his OT and PT will work together and there will be lots of overlap and communication.

This is not to say that we've had bad experiences with individual people here. All the people that have worked with Ethan have been dedicated and good at what they do. It's just that his needs have outgrown what they can provide. It makes me wonder what it will be like enrolling him in the school system, specifically preschool. It seems crazy to worry about that right now, but he'll be 2 this summer, which gives us 1 year to make a decision about where he should be.

Now that I've significantly raised my blood pressure, I think I'll go sit in a corner somewhere and play with a ball of yarn.


Wednesday, March 14, 2007

No More Pity Party

Well, we're all feeling much better around here you'll be happy to know. Richard is feeling better at work, Ethan is getting through the teething, and I have had a taste of spring! Yesterday Ethan and I went to the park near our home where he made a handful of friends and had a great time in the sun. He went down the slide on his tummy and rode on the baby swings, sat under the pine trees and played with pine cones, and crawled around in the dirt and rocks.

Ethan and I also went swimming yesterday! We've joined a swim group that meets at the school for developmentally disabled children. They have an indoor heated pool and the group meets every Tuesday. Ethan is a big fan of water (it's one of his favorite signs too) so he was in heaven. His favorite part was watching the big boys jump in performing canonballs and splashing the rest of us in the pool, he literally screamed with delight everytime someone jumped in. It was nice for me to meet new moms and see other children who have a harder lot in life than E-boy, it puts things into perspective again. He has some obstacles, but nothing that is going to prevent him from having a high quality life. Not if his dad and I have anything to say about it!

Another item that really cheered me yesterday was the phone call from Marylee, the pediatric OT in Marietta. She evaluated Ethan last summer for sensory processing issues and is very excited to see us again and start working with Ethan on his oral motor problems. We really liked her and I was just overjoyed that we didn't get put on a waiting list. Getting directly into pediatric PT or OT without being put on a waiting list is really hitting the jack pot!

I never thought I'd be excited about Ethan having to add yet another therapy to his daily schedule. If there is a chance that she can help him get past his oral aversions, he could start eating like a normal child. He could start learning to use his mouth to make speech sounds. This could be the begining of a really positive change in Ethan's development. For that, I'll drive to Timbuktu if I have to.

Saturday, March 10, 2007

My Pity Party - No need to RSVP

Okay, this blog is all about Ethan. But I'm carving out a little me time here. I guess I'm hoping this will be a bit cathartic.

We've been on a roller coaster ride for 18 months and counting. I've been getting through all sorts of emotions with relative ease and it's probably because Ethan is a really positive distraction from those feelings.

I think most days, I just keep my head above water by focusing on the schedule and keeping Ethan happy. I don't dwell on stuff that I find scary or depressing, because it scares and depresses me. He has so many pressing needs right here in the present that it's a waste to spend much time worrying about the future.

But the fact that he may have apraxia of speech has hit me like a ton of bricks. I don't know much about it, but what I do know scares me out of wanting to learn more. Apraxia is a neurological disorder, which in and of itself is disarming. It's a condition that makes it difficult or impossible to speak. Like autism and many other disorders, there is a wide spectrum of what is possible, from mild to severe. I was hoping that Ethan could be "neuro-typical" (a term borrowed from this blog), even though we have been prepared that might not be the case. CMV is truly heinous.

Why is this apraxia thing suddenly more concerning to me than the fact that his eyes aren't working right and he'll likely need surgery? I guess because it's a corrective surgery and he's already been through major surgery, so I'm not as upset by something that is routine and seen as an outpatient thing. But not being able to talk? Come on. That's heart-breaking.

Mom reminds me that he's gotten through so much already, so he'll get through this. No cerebral palsy, no more torticollis, no more apnea, and hopefully someday, no more acid reflux, and a pair of eyes that look straight ahead.

I'm normally just so grateful and optimistic, but not today.

Wednesday, March 07, 2007

The Latest

Ethan has been busy cutting teeth, starting the first phase of walking, and visiting various professionals involved in his long term care. wouldn't believe the overall havoc that has been wrought on Ethan's gums and bowels. Let's just say it has been ugly (and smelly) around here. Glad that's over. He's got at least 12 teeth now, there could be more, but I'm not willing to get a finger cut off to find out.

Walking...he is getting close. His balance gets better each day and he is gaining the confidence to practice more and more. He still prefers a crawl, and he's the fastest most agile crawler I've ever seen. Anywhere from 2 weeks to 2 months and he'll be cruising around vertically.

Doctoring...well we just got home from Cincinnati Children's where we saw the amazing folks that are looking out for him. They are SO GOOD and they treat us with great care and respect. As often as we find ourselves there, that's an important distinction to make.

Developmental Report:

Dr. Wiley no longer believes that Ethan has cerebral palsy. That's the kind of news we like to hear! She's still concerned about his motor problems, but is pleased with the progress he continues to make. He's still about 4-6 months behind in the gross and fine motor area.

She's concerned about the oral motor issues and is recommending that we take him to an occupational therapist to work on that. She's also connected us with a speech pathologist at the hospital who is a guru in this area. His lack of consonent production has raised a mild concern, along with the oral motor difficulty he continues to have. He will be evaluated for potential Apraxia of speech, which we're not going to worry about yet. (Yeah, right) It's just best to be on top of this stuff as early on as possible. I feel like if anything, we've been excellent about that.

She increased the amount of melatonin he is able to take each night. We'd all still like to see lots more improvement in the sleeping.

We also talked about his sight. It seems to her that he is having depth perception difficulties. His right eye continues to turn out even though he has worn glasses for 2 months. In April we'll see the opthamologist and discuss corrective surgery. Ironically, one of the possible side effects of that surgery is a loss of depth perception. I need to learn more about this surgery. Hmm.. what else?

Oh, sign language! We were encouraged to continue exposing Ethan to more and more sign. He responds to it so well and it could make a big difference for him if he ends up having a slow progression to speech.

So that's what's up in Ethan's world (and mine, and Richard's).

Monday, March 05, 2007

We'll miss you!

Today was a sad day, as you can see from Ethan's expression. He had to say goodbye to his speech therapist :-(

(the teething pain is getting unbearable too)

Erin is a graduate student at O.U. and has been the clinician working with Ethan since the very beginning of his journey to sound. She has been everything we could have asked for in a therapist and we've felt very blessed to have her along for the ride.

Erin is going out into the greater world beyond the clinic doors at O.U. and we wish her all the best on her adventure. I know for sure that she'll be a terrific therapist in any setting of her choice, but I hope that she ends up working with kids. Ethan loved her and she had a real knack for making him happy, not to mention the progress that he has made since working with her!

We'll have a new student to break in, and I'm sure she's good too. But we'll always have a special place in our memory for Erin.

Friday, March 02, 2007

Ethan's Fan Club

Ethan, basking in the adoration of his new friends (and signing about the ceiling fan).

Today we attended a cub scout meeting to talk to the boys about sign language.
One of the boys in the group has a hearing loss and wears a hearing aid, so he passed his aid around the group and had a chance to talk about his experience. They asked great questions and I could tell they were genuinely interested in the topic. I shared a neat fact about the history of sign language in the U.S. that they really appreciated. Did you know that the football huddle was invented by deaf football players (at Galludet in 1880) in order to hide their plays from the opposing team? Cool, huh!

As you can tell from the picture, they were very sweet and taken with Ethan. It was adorable to see.
Ethan really loves having a group of big boys to play with, I wonder if I can arrange for him to be one the scouts?