Tuesday, March 22, 2011

Orion: March 2011 Update








Cuddling siblings.






Orion is 8 months old now! He's much closer to his 1st birthday than his day of birth.

Orion, Anastasia and I recently flew to Seattle to join my family and to visit with my Gma Dorothea. She had a big stroke and the last time I visited with her (in person) was more than a year and half ago. I'm so glad I went. I introduced Orion to Gma and despite her new limitations from the stroke, she gave Orion a kiss on his cheek. We made sure we visited Dick's Drive-In and enjoyed the fine cuisine of Burgermaster's. The visit was only a week but it felt longer and meaningful. Now we're back in Maryland. By the Traveling-With-a-5-Year-Old-and-a-Nearly-8-Month-Old-Baby standards, the traveling was easy.

Around this time last year, we were so thrilled to know more about our baby, that he's a he and we did not know yet about his microphthalmia. I believe it was April when the doctor, after a long ultrasound session, got to the point and said something along the lines of, "Your baby has little or no eyes." I was floored. That's a story for another day.

Orion's Head
Orion's done much, much better with his STARband after I got a tip from the cranial remolding specialist about using baby powder on the inside of the helmet. It's worked WONDERS! Not a red burn mark wherever we applied baby powder. We were doing fine until I scratched his forehead with a fingernail while taking the helmet off. Guh-REAT! Now I have to leave it off to let the little itsy bitsy scab heal. The specialist scanned Orion's head in their STARscanner (It took less than 5 seconds!) and compared it with a scan of Orion from January 28th. She's happy with the results but it could have been even better if the helmet stayed on his head 23/7. The measurement taken on January 28th showed a difference of 17mm. Imagine the letter "X" on his head looking at the top of his head from above. One line of the X is shorter than the other line, making the difference 17 mm. The helmet 'brakes' (not squishing or squeezing, thank you!) the growth of the long line of the "X" so that the short line can grow/catch up/balance the other out. With today's scan (3/21) it was 11.9mm. Any difference less than 7mm is considered acceptable. We have 1 1/2 more months to go of this 3-month helmet-wearing plan. I am so glad with the timing, wintertime/springtime is probably the best time to wear the helmet since there's less chance he will sweat as the helmet keeps body heat in. Imagine if he had to wear it during the summer.

Orion's Eyes
It's been more than a month since Orion rubbed his clear shells out of his eyes. I was expecting his clear shells to arrive today (3/21) but was totally surprised and impressed with the blue peepers looking back at me from the bottom of the two plastic vials. His left shell was clear where the pupil is located, the iris and "whites" of the eyes were painted; the right side was fully painted. After waiting and putting it off all day, it was TOO easy to put them in. His left shell went in too easy in a single attempt, and no crying from Orion. (Thomas can confirm.) The right side took a few tries with it effortlessly staying in at the last try. Simply pull up upper lid, slip shell in then pull lower lid down and it's already in place. Good thing it was easy because the ocularist informed me that kids often rub them out or pull them out perhaps as a game or protest, perhaps a power struggle. Guess the reason depends on the age of the kid. Just put it back in. I saw a video online of a young girl, perhaps 9, 10 years old putting her shells in by herself. I look forward to seeing Orion opening and closing his eyelids all day tomorrow. Maybe he'll even let me take a picture of his new eyes. We'll see how long it stays before he rubs it back out, too.


Orion's Ears:
On March 4th, we went to Johns Hopkins for a hearing evaluation. I held Orion quietly on my lap/chest facing the audiologist and an assistant outside the booth window. They watched Orion for signs of reactions like change in breathing, startling, a pause, anything to suggest he heard a sound. Orion just sat there busy playing with my fingers. The audiologist used her voice into a microphone up to equipment limits (90 decibels) and they reported that Orion did not respond even with the hearing aids he was wearing. His hearing aids are set for up to 50, 55 decibels. It also doesn't help us wonder if he's used to the loud music Anastasia dances to at home or for the songs at Open Bible Deaf Church in College Park. Even at 1 month old, the music (that you can feel, too) blaring out has never startled Orion! We, as his parents, need more information. Meanwhile, with my permission, the audiologist sent Orion's information to the Hearing (or Listening) Center at Johns Hopkins to discuss the other option, cochlear implants.

Interestingly enough, I was able to access information shared during a recent webinar on "The Use of Cochlear Implants and their Impact on Children who are Deaf-Blind: Research Findings and Implications". I missed the live webinar (3/16) since my head wasn't screwed on after a long trip back to Maryland from Seattle, arriving during the wee hours of the morning of the webinar. The information is very interesting! Again, we still want more information. I enjoyed reading the stories of (oh, so cute) Deaf-Blind children with CIs at http://www.kidsdbci.org/family-stories.html. This website belongs to the researchers of the DB with CI project.

Orion's Teeth
That's right! Teeth, not tooth. While we were in Seattle, there were two sore looking bulges on Orion's upper gums. Usually the bottom two central incisors comes out first but Orion's chompers seemed to have other plans. Sure enough, Orion's bottom right central incisor poked out through the gums on Saturday (3/19), edging out by a hair the upper central incisors so it'd be Orion's first tooth! In second place is his upper right central incisor (3/21), the left's sure to take bronze medal any day now. Orion was a little fussy, chewing on fingers and toys, with slightly more saliva and on Friday or Saturday night he wouldn't go to bed until 1:30 a.m. It's all much better now, even though he's still chewing... I would think it's now mostly for exploration than comfort.

Orion's Sleep
His sleep has improved. I consider it a dramatic improvement since I'm able to sleep longer before he yells for his milk. The trick was to feed him more baby food. Sorry, Orion, we really weren't trying to starve you. We're more than happy to fill you up with your vegetables and fruits. :) I'm sure Orion's grandparents appreciated his using his new sleep pattern in time for his recent visit in Washington state. Now the bedtime issue belongs to another child of ours, Anastasia! She's a night owl. *sigh*!




Orion's totally zonked out here! (8 months old, 3/19/2011)

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