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)

Heads Up!

Orion is now 7 1/2 months old.

Knowing Orion lifted his head on Monday (2/28), I watched him for it on Tuesday (3/1).. nothing. Then on Wednesday at PIP and again during our Prince Georges Co. ITP visit on Thursday, Orion lifted his head... a lot! There's three things that comes to mind that helped him: 1) he's older, obviously; 2) the STARband (helmet) inadvertently worked well as a 'training' weight; 3) the loaner wedge PG Co's physical therapist left with us worked out for Orion. The wedge is around 40 degree triangle that Orion laid tummy-down, head pointed up, on and we helped him lift his head then he started finding a way.... it started out with him rolling his head onto his arm/shoulder and then to what looked like an uncomfortable 'heads up' position, all with the STARband on. His STARband was off on 2/28 and then it came off full time on 3/2, so his head has been weight-free since then. The helmet created what looked like a friction burn on his forehead so I took it off so his skin could heal. Orion hasn't really lifted his head much over the weekend, we need to go back to #2 and #3 on what preceded Orion's latest accomplishment. Work, work, señor, work!

There's more updates, regarding Orion's shells and his recent visit to the audiologist at Johns Hopkins, but I wanted to get this one out the door.

Big sister Anastasia (newly 5) and little brother Orion (newly 7 months old).

Orion's Highchair Adventures

Fun title, huh? OK, nothing like an Indiana Jones movie here. During the past month, we've started adding baby food to his routine. At first I was concerned about him pushing the baby food back out of his mouth with his tongue. Turns out it's normal with all babies and their first baby food experiences. He's doing wonderfully, especially with sweet potatoes, carrots and bananas. In the video below, Orion stars as the baby during a typical highchair feeding session. How does he know the food's coming? There's even a bonus scene of him reacting to green beans!

Also, today Orion lift his head up while laying on his tummy and held it up for 1, maybe nearly 2 seconds, twice! He was smiling while doing this.

Keep Open The Only Local DC Day Camp Choice for Our Deaf and Hard of Hearing Children Petition

Keep Open The Only Local DC Day Camp Choice for Our Deaf and Hard of Hearing Children Petition



The reason why this petition was created:

Gallaudet University's Administrative Programs and Services Review Committee (APSRC) report released in December 2010 showed that the Children's Instructional Summer Program (CISP) has been recommended for closure. At this point, the word out there is that there will be a final review during the first week of March 2011 before announcing the fate of CISP.

CISP has served Deaf, Hard of Hearing and hearing children in the community (metro Washington DC) for at least four decades. 2010 may have been CISP's last summer of operation. Reasons given are high-risk liability (camp location is a little too accessbile to the public even though nothing has happened); and the current summer location is needed by other campus programs (both reasons can be resolved by relocating elsewhere on campus).

Help us show how much support there is behind keeping the ONLY LOCAL DAY CAMP FOR DEAF AND HARD OF HEARING CHILDREN OPEN. You can follow the link above to read and sign it. This petition also recommends the camp to include hearing siblings of deaf children and KODAs (kids of deaf adults).

Our connection to CISP is that Skyler went there for 5 weeks during the summers of 2009 and 2010; Anastasia joined him in 2010.

Orion: Pop Goes the Shell!

Our Valentine, with shells in both eyes.

Oops, I did notice Orion's left eye looked different today but didn't realize why I never saw him open his eye until I was putting him down in the crib tonight. There was a lonely eye shell in the middle of the crib! It apparently popped out sometime last night. I need to call SuperOcularist tomorrow for what I should do.

Food-wise, Orion was doing a little better with baby food. Perhaps because he somewhat liked sweet potato better than rice cereal mixed with applesauce... but I know he's learning to eat and not push the food out with his tongue.

That was interrupted with Orion staying at Children's hospital with oxygen via nasal cannula as he took a week (Jan 30-Feb 6) recovering from bronchiolitis caused by a nasty respiratory virus. (I'm grateful for the e-mails and visits. Thanks!) He went to the ER via ambulance from the doctor's office on Jan 29th and then again on the 30th when he was finally admitted. Yep, on the 6th Orion was released during 1st quarter of SuperBowl. Healthwise, he's doing very well. Sleepwise, he's sleeping during the day and awake at night... guess who has the night shift from Sunday through Thursday night?!

Now we know he's willing to eat carrots. After putting on his bib in the bouncer, I give him a spoon to hold. Oftentimes he doesn't want to hold it. To let him know I'm going to feed him, I sign "eat" or "food" on Orion's lips, then I tap his cheek next to his mouth and he opens his mouth and in goes the baby food. It took a while, especially when we had to stop and then start again when he got out of the hospital but here we are... he's eating off the spoon! Next, I think I should move on to letting him feel where the spoon goes to 'refill' itself. Messy, but he'll know how it works.

I'm not sure, but I think Orion intentionally signed 'milk'. I was feeding fussy Orion some baby food and he squeezed my finger repeatedly like I'd squeeze his arm to sign 'milk'. I gave him some milk, he stopped signing it, finished his bottle and fell asleep. Last night he signed 'milk' again, so I gave him his bottle. I'm not sure if he's sign-babbling or actually asking for milk but I am watching him.

Orion is wearing a STAR band (helmet) to encourage his head to continue to grow in a way that his head is nice and round again. He has plagiocephaly (flat head) on the right side of the back of his head. The helmet doesn't squeeze on his head. The inside of the helmet has the form of a 'perfect head' and it fits around the longer part of his head (left back to right forehead) and that sort of puts a brake on growth in that direction and encourages his head to grow/fill in the direction of the right back and left forehead. He's to wear the helmet 23 hours a day for 12 weeks. He will have follow-up appointments every two weeks. He doesn't mind the helmet, only fusses if he's sweating or too warm (yes, like hats, it keeps body heat in). We can take it off for a little bit to let him dry and cool off.

Orion still loves bathtime and the perhaps overly curious company of other little ones. He kicks his legs like a frog and wiggles vigorously in the water. He has been away from other little kids, especially his little PIP friends for too long so it was so sweet seeing him smile when another little hand touched him today. There's something about little hands... cute little inquisitive hands.

Orion's big sister, Anastasia is now 5! Happy Birthday! (Note the purse birthday cake I made for her.)

Orion is 6 Months Old, New Little Accomplishments

Orion is 6 months old!

We started giving him rice cereal last week, I realize I need help in this area. Orion just fusses and pushes the cereal back out of his mouth as soon as he realizes its not milk. I've even offered him his own spoon to hold, as a symbol to become familiar with to know what's coming next. This is the next skill I need to learn in order to have him help himself. I've resorted to putting some in his daytime bottles for now. He doesn't mind this but this little boy does need to learn to eat by spoon.
















Orion's first cereal feeding. (1/11/2011)

On Jan 14th, Orion surprised me with squeezing his hand on my finger while I was feeding him his formula so I jumped right in hoping we'd have a turn-taking experience. We did! Orion's hand on Mom's finger: squeeze, squeeze, squeeze. Mom's hand on Orion's forearm: squeeze, squeeze, squeeze. Orion: squeeze... squeeze... and so on. Since then it has evolved to include squeezing in the air or while touching the bottle (fingers close to the handshape 'S' next to the bottle, not around the bottle).

Also new with Orion that I forgot to mention in my last post (1/9/2011) is he's been able to grab his thigh, lower leg and occasionally his toes. I started out with lifting his bottom so his feet were closer so he could get a good grip on them before I let go. Now he knows about the new tootsie toys, his toes.


Orion plays with his feet. (1/17/2011)

In the morning (1/19) we'll go see a pediatric ophthalmologist, who also happens to be Skyler's, to evaluate Orion's vision. We will have more information for all three of us, the ocularist, the ophthalmologist and myself. I am unsure what would become of the type of shell (or whatever else there may be) for Orion's left eye but I am looking forward to finally getting the shell put in his right eye.

UPDATE (1/19/2010): We saw the pediatric ophthalmologist this morning. Orion was deeply sleeping during the exam, except to fight and holler when the ophthalmologist pried his eyelids open. It looked very uncomfortable! When the exam was over, he was already asleep again. She said it didn't look like Orion had any vision so she was interested in my observations of him flinching to camera flashes and an exam light. (She did use her exam light but that was while Orion was asleep.) No matter, the ophthalmologist recommended Orion to have his right eye shell put in by our ocularist. So that shall be done!

Orion's Physical Activities, Eye Update and Online Communication Resources

The Withrow 'boys': Skyler, Orion and Thomas. 12/27/2010.


The events in this blog post happened the week of January 3rd. Orion is 5 1/2 months old.

Orion's Physical Activities

Orion is holding the bottle more and more. He still likes to hold a finger of the person who is holding the bottle for him. Earlier this week, he tried bringing the bottle's nipple to his mouth but 'over-shot' and gave it to his forehead. Now after a little more experience he's gotten it to his mouth once so far. He is giving himself breaks, sucking milk and then stopping, whatever the reason was. One time when I didn't put the bottle back in his hands fast enough I saw him bring both hands together as if he expected the bottle there already. Orion's big sister, Anastasia, helped hold the bottle for me one time and I saw her squeeze his forearm. Good girl! As for Skyler, he loves to snuggle, hug and kiss his little brother.


The video below shows the two brothers during a snuggle session where Skyler realizes Orion has him in his grip. 12/27/2010

I was violently, but thankfully briefly ill on Sunday (1/3) and somehow Orion's sleep pattern spun out of routine- he's now awake at night and sleeping during the day. If I don't make sense, you know why. Monday morning/Sunday night, Orion was VERY active. Our bed was jostled by his constant movement. He was excitedly bicycling his legs, picking up both knees and plopping both of his legs back on the bed at the same time, arms thumping the mattress, arching and dropping his back on the bed (repeatedly). It was as if he discovered these new movements he could do and entertained himself at his parent's expense. The past week has been a sleep martyrdom experience for us. I just looked up a book on a no-cry sleep approach, so I'll be visiting our local library or amazon.com soon. Physically he's doing wonderfully even though he still hasn't lifted his head off the floor, mat or bed long enough/stable while on his stomach. I know he'll get there with consistent, regular workout/tummy times. His arching his back and turning his legs over is giving him enough leverage to roll over from his back to his stomach, the only catch is that the arm that is rolled over gets stuck underneath him. He's outgrown his current clothes size range (3 to 6 months). Imagine the fun and challenge of doing certain motions for the first time and constantly readjusting while your body grows quickly.

Orion plays with links. 12/30/2010

Orion's Eyes

Orion and I went to the ocularist in Bethesda on January 7th for the shell for his right eye. The right side shell been put on hold because I need to take Orion to see a pediatric ophthalmologist to check what kind of vision he has (in his left eye) and make a plan for Orion to have maximum access to the vision he has. Probably still only light perception but what raised a flag for the ocularist was that Orion appeared to be tracking, or trying to track with his left eye. Thomas and I did notice quick eye movements recently. I thought it looked like nystagmus (smooth movement in one direction then a quick eye movement back) and I've only seen it happen with him once in a while. Maybe once a day or less. I looked it up and nystagmus is associated with blindness. The ocularist was very pleased with how Orion was doing with his shell. The shell certainly enabled Orion to open and close his eyelids, giving him access to what's out there beyond his eyelids, even if it were only light. So, on January 19th we'll learn a little more about Orion's vision when he sees the 2nd pediatric ophthalmologist. (The first one was a plastics ophthalmologist who recommended we do nothing for Orion's eyes for 6 months. I blogged about it in 'Second Opinion' here.)

Online Resources on Learning and Communication

I found a terrific series of short videos online by Perkins School for the Blind (Watertown, MA) with a lady named Barbara Miles talking about Deaf-Blind children and learning through touch. Heart-touching! Did you know that you and Orion can look at things together? You can touch and his hand can 'ride' on top of yours over the object or activity you are doing. I've always told myself that when Orion gets older, I'll tell him about how I've often admired his face and beautiful white hair, from merely inches away. Now, I'll just touch his face or hair and he'll know.

Also enlightening was an article posted on www.nationaldb.org, "Talking the Language of the Hands to the Hands," by Barbara Miles, It's a bit long, but an exciting read for those of you interested in learning about communication. Get your favorite drink (in my case I enjoy Thai iced tea very much) sit down and read on!