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.