Saturday, April 12, 2008

Doctoring Update

This might be a first for me, publishing two posts in one day. I guess I'm just making use of the time while I have it available. It's not likely to last with a move on the horizon. We're doing lots of beautification around here, which is no simple task with a 2 year old on the scene.

I have a few noteworthy things to report from Ethan's visit at Children's last week:

Ethan is "significantly apraxic". I've been well aware of it for many months, but having it put in those terms during a diagnostic visit has left me feeling sad and depressed. But Ethan has always defied nature and our expectations and I've no doubt he'll continue to do so as he grows.

Apraxia is a serious neurological disorder that effects the ability to speak. Acquired apraxia is common in adults who have suffered a stroke. Developmental apraxia is found in young children who are learning speech and it often accompanies other neurological conditions such as hypotonia and sensory integration dysfunction, both of which Ethan has always had.

What is bringing me hope right now is the thought of moving to Cincinnati and getting Ethan enrolled in St. Rita's School for the Deaf which has a preschool class designed for apraxic children, most of whom actually can hear. They use speech and sign to help these children communicate and the environment is Montessori based. It's an IDEAL setting for our boy and I hope that the price tag doesn't prevent him from being enrolled. If we move into a cooperative enough school district we should get some support, so that is the guiding factor as to where we will actually live. It's tricky and there are no guarantees, but we're hoping for the best and could use a little magic or prayers if you've got either one to offer.

The developmental doctor urged us to give melatonin another try for Ethan's horrible sleep habits. We tried it about a year ago and saw no changes and decided to stop. Melatonin is a hormone secreted by the pineal gland that regulates sleep. We gave Ethan a dose last night and he fell asleep in about one hour, which is a big improvement over the usual 2 or 3 hours that it takes for him to settle into sleep. He slept a total of 11 hours last night only tossing and turning for about 45 minutes in the middle. So I'm cautiously optimistic about this new possibility. If he started sleeping like a typical child his age, that would pretty much rock my world. So again, keeping my fingers crossed.

We were also pleased to hear that Ethan is in the 10th percentile for weight, which is still quite small, but a huge leap for him considering that most of his life he has been in the 3rd percentile or not even on the chart to begin with. I give ALL the credit here to Marylee, the beautiful and spunky OT that has taught me so much about how to make creative and healthy foods that appeal to his needs. I'm sure we'll find a good OT in Cincy, but honestly no one can replace Marylee in my mind.

Lastly, Ethan has been given new maps for both processors. His "new ear" has virtually caught up to the "old ear" and he performed equally well with both in the sound booth. He now has a map for each ear that is specifically designed to enhance the experience of listening to music. Now how about that? So totally Sci-Fi isn't it?

I'll leave you with a picture of our boy playing peek-a-boo in his fort. He's wearing my favorite article in his wardrobe, the Harvard sweatshirt Rich bought him recently in Boston.



24 comments:

flutter said...

He is such a doll. I have no doubt that he is going to make amazing leaps and bounds, love.

Drew's Mom said...

He is such a cutie! And I like that Harvard sweatshirt, too!

Sounds like you have found the perfect program for him...can't believe he is almost 3 and ready for preschool. Where does the time go?

Kyla said...

OMG, that school sounds amazing! Like they created it just for Ethan!

It is strange how you can KNOW things and then having them confirmed is still a bit of a hit. When we found out about KayTar's hearing loss initially, I was like "Okay, let's get her aid, let's fix this." and I was fine, really. But during the second ABR, the audiologist showed me the function of her ears comparatively and watching the total lack of responsiveness in the one was HARD! Totally illogical, because we already knew that and she already had her aid and was doing great!

Mom to Toes said...

Love him!

I'm so glad you finally have the official diagnosis and can move forward.

You should add a "Moving Day" countdown ticker to the blog. ;)

La La said...

I will pray that the price tag for that school (nor anything else) gets in the way of Ethan attending!

I will also pray for his sleep and your sanity (as I know what sleeplessness can do to the parent as well as the kiddo).

And, I will pray that you all find the perfect house in the perfect location!

Love to you.

Magpie said...

He is adorable.

jen said...

it must help to be able to wrap your arms around it a bit more, yes?

he is truly magnificent.

Jeanie said...

A few days ago, Ethan came to visit. He's always been fascinated with trees and has signed tree for a long time. But when I picked him up, he signed tree and then said "tree." I was blown away. One thing about a child who has to work at things is that every accomplishment is a miracle. It gives me goosebumps now as I write this.
Grandma Innis

Hetha said...

Yes that's right! And just this morning the three of us went out for breakfast and while looking at his signing time book Ethan looked up at us and clearly said "apple"! He put a great deal of emphasis on the second syllable, he was trying *so hard*! We have been asking him to say it over and over today :-)

David said...

I am so overwhelmed and thrilled at Ethan's good news on his weight, his sleep last night, and his hearing..
Small steps and big steps for you guys. I am so happy for you and your Family. Tell Ethan I thought about him and his magical processor when I was in recovery from my surgery.I would love to meet him one day and compare notes.
Warmly,
David

Val said...

He has the best care already, Mom and Dad sound amazing. I've had countless people tell me various deformities or various things that were wrong w/my Gage. I even had an eye doctor use the word "retarded" which to my surprise is the correct term used in the medical field. And that was just a couple of years ago. I knew it was because of his speech. At the time he was newly implanted. So my point being...keep your chin up, take care of Ethan, love Ethan, and that's all. Someone trusts you very much to give you such a jewel! He'll be fine, mom and dad will make sure of that. I recently posted about when I got the news about Gage's ears being so malformed inside. It was hard to hear! But now looking back, I was thinking the worst and he turned out just fine ! Be proud of yourself mom, you're doing a great job.

GFCF Mommy said...

It does sound you like you are doing a great job and we'll send prayer and positive thoughts your way for the school situation. I hope it works out! Ethan is beautiful. Isn't it amazing how hard our children work? They really are achievers, in their own way.

Hope the melatonin continues to work too. We have not used it, but other people I know have had success with their children. A good night's sleep is key to the whole family's happiness!

I am happy to have found your blog too!

Katherine

I am Trish Marie said...

Even when we know what is wrong, the actual label still is hard to hear.

CC said...

Thanks for finding my blog. Feel free to visit often. I'm going to focus on ASL in May (although geared mostly towards hearing children). Your son is adorable. Best of luck in getting him into that that school It sounds awesome!

Aliki2006 said...

I love the sweatshirt, too!

Melatonin has saved our evenings around here. It hasn't done much to keep L. sleeping through the night all night, but it has helped him wind down, and reminded his body that it's time to be sleepy at bedtime. He has always had trouble "reading" his body's cues and switching off that active brain/body of his at the end of the day. Melatonin has certainly helped in that department.

Kellan said...

Wouldn't it be cool if one day - when he is a grown-up boy - he went to Harvard?!? He is a cutie. I'm sorry about the apraxic news and can only say that I hope he out-performs all expectations - he is a special boy!!!

Haven't seen you in a while - nice to see you - need to catch up on your posts. TAke care- Kellan

leahlefler said...

The preschool program sounds perfect for him! Apraxia can be tough, but kids can work through it (my DH was severely apraxic and didn't speak clearly until kindergarten). He now has his MBA, so it certainly didn't hold him back! We're not sure what is going on with Matt- they still have him listed as "severe artic."

Good luck with getting everything ready for the move! Oh, yeah- and you've been tagged (see my blog).

Lisa said...

Heather, If you haven't already, check out http://www.advocatesdeafed.org/
They are extremely helpful with educational support.
Hope you're feeling better!
I'm so happy you're making the move to Cincinnati

KC said...

I've got prayers, babe. That school is THE BOMB. He's going. And he's going to keep being the little miracle that he is.

Lisa b said...

oh Heather he is SO ADORABLE.
Very cute in the Harvard Sweatshirt.

I followed you over from Kyla's.
Seems like our kids have a lot in common.

Loudest Mom said...

He is too cute! And, congrats on the new phone :) We're in the same situation with Trey's school, but we have found that there is *always* a way to make things happen. We'll keep our thoughts with you all that it gets worked out. It sounds like a fantastic program! I don't envy you the moving process, but it will be well worth it. Good luck!

Sarah said...

What a cutie pie!

Hope there are no problems getting Ethan into that school, it sounds wonderful for him!

Eileen said...

I love the pictures, he is too cute. I was so happy to see his smiling face. The Harvard sweatshirt is perfect!!

Well, you got an awful lot of news about Ethan, and that is good. Yet, we all know that it is Ethan who is going to lead the way, just like he always has. He has plowed through so many developmental milestones over this past year, and will continue to do so.

I will pray that you get him in that school. Have you started to process yet or do you have to have a house there first? I know this can happen for him. It sounds perfect. Keep us posted on this Heather.

Melatonin helped Melanie when she was younger and helps Hannah now. Melanie always said she had a "window of time" that she had to fall asleep or it wouldn't work. I think it was the first 45 mins. She usually fell asleep by then, if not, it didn't work. With Hannah, she is out cold. Our Pediatrician really likes it for kids, he says it even helps kids who are very ADHD and so much safer.

Have a good night!
XOXO

Karen said...

Just yesterday, I was asking a friend of mine about her memories at St. Rita and she said she loved that school. How timely to read this post about it.

Making those big decisions about schools is never easy! We've done some wrestling over that ourselves.