We wish you a happy 2011!

We got carried away in the strong current of family going-ons (no Holiday Card this year! *sob*!) but friends and family has always been in our thoughts. Here's a message from us to you!

Naming Orion Theodore

Our third child, born and named Orion Theodore, is around 5 minutes old in his first picture.

We were relieved to meet him at last. We were floored with how beautiful he was and that his hair was delightfully white!


An e-mail I sent to my grandma, Dorothea Nordstrand, back in July 2010 shares how we picked out our newest son's name.

"Hi Gma-

I wanted to send you a note to let you know how we decided on Orion's name. We picked Orion because it's a fun constellation to find in the SKY and his big brother is Skyler. So both of our boys' names are in reference to the sky. As for Theodore, there are two major reasons: we wanted his middle name to start with a "T" to go along with Skyler Thomas and Anastasia Thora. My poor mom had a heck of a time following me yesterday in a puzzle activity I did with the name 'Theodore', so I'll spare you. Put the last two syllables in the name in front of the first two syllables and ask yourself what it sounds like. Instead of TheoDore, you should see DoreTheo. (Yeah, cross out the last 'o', though so it comes out DoreThe.) A flip-around of your name, Grandma Dorothea! Mom was so funny- saying something like it's a girl's name and yeah, I got a little creative knowing we're having a boy.

Hugs,
H"

(I realized later I counted the syllables wrong, but we all get the point, right?)

Then my Uncle John whips out yet another phun pun that I have two "suns". He never fails to amuse!

Our daughter's name is also inspired by yet another awesome grandmother of mine, Anastasia Lightfoot. Grandma Anne, as we grandkids called her, was talented with drawing cartoons and sure loved to laugh and joke. She and I used to have cartooning contests to see who could come up with the most ridiculous characters. Interestingly enough, my little Anastasia has an apparent addiction to drawing, too.

December 20, 2010

Monday, December 20, 2010 is a day forever written down in Withrow family history. Not because of Orion's new shell but because Thomas' dad, Thomas E. Withrow, Sr., passed away peacefully in his sleep during the morning of the 20th in Columbus, Ohio. His 82nd birthday was on December 15th. We will miss him and we are happy we saw him during Thanksgiving (and that he saw the whole family, Thomas and Dale's) and that he went the way he was hoping to go. Thomas' mom, Elaine, has flown in to Maryland to be with the rest of the family at this time. We will have a memorial service here in Maryland sometime next week.

Orion went to the ocularist in Bethesda midday of the 20th to get his new shells. It took around 30 seconds to get it in. The ocularist slipped the top of the polished plastic shell underneath Orion's top lid, and that's when he squeezed his eyelids shut but that didn't stop the ocularist from pulling down the bottom eyelid and the bottom of the shell went right in. Orion was MAD, then he complained and fussed while I massaged his legs, etc. In 20 minutes he was completely settled down as if the shell wasn't even there, and that remains the same 2 days later. We only put in one shell on the left eye, the right shell will go in on January 7th depending on how Orion does with the left. The shell is like a huge contact lens, curved deeply on the inside so it doesn't touch his cornea but only around it. There was a black dot painted in the middle of it, kind of like everyone else's pupil, I can see that the shell has not slipped out of place. I could see the difference right away as his top eyelid wasn't turned in anymore, and Orion has been opening his lid gently by himself. The ocularist waved a light in front of Orion's left eye, with the shell in, and he flinched. It's definite Orion sees light through that eye. He said if Orion can see light he'd open his eyelids to find it, than try to look through closed eyelids. Interesting.









Working on a bottle. The shell is reflecting light and shadow, making it look like he has an iris in this pic.


His left eye looks more full with the shell in. Can you tell?

Fleeting Light (And Sound)

First of all, let me open with saying that I am a mom, a witness and definitely not an ophthalmologist.

Orion responded to at least strong light.

Very few, were the events that I thought Orion may have seen light. I doubted it because it was not definite, not consistent and naturally I was biased, hoping Orion would be able to recognize light and darkness. One bright day, maybe when Orion was 1 or 2 months old, I had him in his infant carrier in the shopping cart coming out of Target. I thought I'd see what happens if I let the sun shine in Orion's face. He was peering out of his barely open eyelids with the sun shining directly in them, no reaction, but a few moments later he squeezed his eyes shut tightly. Later on I figured his eyes became dry, thus the shutting of his eyes.

On Thursday, Dec 9th, Orion (20 weeks old), Tasia and I went to Johns Hopkins to get his cool new hearing aids. The audiologist put the blue hearing aids in and hadn't turned them on yet, I took a picture of Orion as she stepped away. Orion flinched dramatically as if somebody thumped him on his stomach because his arms and legs came up in a reflex. I couldn't tell if it was the camera flash or if there was a beep that is part of starting to turn on the aids. Nothing definite. After the audiologist turned on Orion's hearing aids and made noises to see if he responded (he didn't seem to notice) but after a while Orion's eyes opened a little. (He tends to open them when he is curious.) I wondered if he was actually peering or listening. He's wearing only his left side hearing aid because he turns his head to his right and that'd make his right aid whistle. Orion seems to respond to sound, but at this time nothing consistent. Things I would notice is him moving his eyes underneath his eyelids, and he'd smile (his priceless smile) sometimes. For now, we'll have him wear the aids when its comfortable for him and see the audiologist at Johns Hopkins in 3 months to evaluate.

On Sunday, I was being Orion's 'mama'razzi photographer when I saw him flinch. Flash, flinch. Flash again, flinch. I took him upstairs to Thomas. Flash, nothing. Flash, flash, nothing. Flash, flinch. OK, we're seeing something definite now. Flash, flinch. Flash, flinch. I didn't take too many pictures of him as I didn't want to possibly upset or scare Orion with the flashes. He remained tolerant.

I find it ironic because we're watching him for signs that he hears something, we find out he sees a little something. I think Orion has a 'seeing' spot, for at least strong light; opposed to sighted people having blind spots. I am very curious how Orion does with clear shells on after the ocularist is to put them in on Monday the 20th. Will he be able to control his eyelids better? Open them wider? More opportunities to see if he looks for light/darkness? Anyway, I hope the weather doesn't get in the way.


Orion is 20 weeks old in this video (1 m 34 sec). I had so much fun with iMovie!

Getting Acquainted With a new BFF (Best Friend Forever): Braille

Mr. Brown Can Moo! Can You? By Dr. Seuss
Photos by Heather Withrow
On November 20th, Thomas, Orion and I went to a 'Braille Babies' workshop at the Rockville Library provided by the Columbia Lighthouse for the Blind. Skyler and 'Tasia stayed with their little friends. We were looking forward to learning how we can introduce pre-reading skills to Orion. We knew about the 6 dots of braille but how would we make it fun for a toddler Orion and Pre-School Orion interested and familiar with braille?

I managed to memorize A-Z in grade 1 braille (uncontracted braille); there's even more to learn with grade 2 braille (contracted braille) but we have time, obviously, as Orion is approaching 5 months old. Grade 1 is one 'symbol' for each letter while grade 2 has one symbol for 2, 3, or more letters. I wish I could think of a better example off the top of my head but in Grade 1, the symbol for 'C' is just C. In Grade 2 the symbol for 'C' is used for the word 'can'. A completely new symbol not used for grade 1 is used for letter combinations in grade 2 braille. As for braille books, it is possible your local library has some for children. I've checked a couple out from our library to try it out myself. I hope each library in our nation has braille books, can you imagine how inconvenient it may feel to go to the library to have a few leaves (or none) for you out of the entire forest? I'm sure there is a national library of braille books that can mail the books to the readers who request them.

The presenter showed us a Perkins Brailler- looked like a typewriter but with much much less keys. (I just HAVE to have one for Orion.) There were some other portable brailling equipment and plenty of everyday toys that are quite usable or interesting to blind children. One of Orion's Prince George County ITP teachers came to the workshop, too. We were happy to see her there grabbing this wonderful opportunity. This workshop was designed for teachers and parents of blind or visually impaired children from birth to 6 years old.

I really loved the idea of using the 6 spaces you'd find with egg cartons and cupcake pans- they're perfectly lined up as 2 vertical rows with 3 spaces. You can take 6 plastic Easter eggs, or tennis balls or whatever.... and make braille letters. A kid could 'accidentally' make a 'T' and you can explain/remark, "Oh, you made a 'T'!"

I also liked the idea of using 6-cup cupcake pans for snack time (I imagine I'd rather have silicone than metal), you can put the kid's drink in the first space and put the goldfish crackers in the 4th space. Just getting the kid familiar with 'something with 6 dots'!

The presenter had a plastic storage container of giant puffballs, perfect for hiding a hard or differently textured or shaped object in for the child to look for. The puffballs looked so soft and cozy so I imagine it's somewhat of a hand/forearm massage as you stick your hands in there. You can also use rice or dry beans.

Orion can play the Memory Game someday! We were shown wood cards that had fabrics and ribbons glued to one side, a tactile memory game. I would have never thought of that! Since then, I've also gotten a tip on a different activity to do with Orion, a matching game, shared with me by Thomas' Uncle Frank. Hold an object in one hand, perhaps a marshmallow and have Orion look for a matching marshmallow in the mystery bag. To up the challenge/fun, add a variety of other things in the bag so he can tell the difference and find the matching marshmallow.

The workshop wrapped up with a big bang, especially for us parents, since they had us go for first dibs on FREE braille books! My eyes nearly popped out of my head when we were shown braille labels of things/rooms around the home that we could peel and stick all over our house. We ended up hauling home a 12x18x18 box of braille books/binders with tactile images for Orion and learn-to-read braille stuff for us sighted parents. So did Orion's teacher, we all left with smiles.

I'm glad to know of a good handful of things to do with Orion when it's time, hopefully I will pick up some more fun activities for him along the way. All the literacy fun will come later. For now, we look forward to Orion's first word... I can make a few guesses. It would be funny to do a 'First Word' betting pool here. Feel free to leave a guess in the comments area and we can come back later on and see who's the lucky winner!



Our favorite gift from Orion: his smile.












Update (9/2/2013): Orion's first sign was "MILK" after all!  Then we second-guessed ourselves; not sure if he meant to say milk or it was just a hand activity as part of him exploring his body.  However, make no mistake, Orion did sign "MORE", repeatedly in front of the rest of the family at dinnertime asking for more cinnamon bread sticks.  We were all very jubilant!

Orion: Early December 2010 Update

Happy Holidays!
Us, at the Winter Festival event at Kendall School. Anastasia is 4 1/2 and Skyler is 6. Yes, it does have a touch of a Nightmare before Christmas scene with the kids' face paint.


This post is an update covering the last 2 weeks. Orion is now 20 weeks old.

Communication:

(Ok, more like mostly one-way.) He only cries for milk, objects to a yucky diaper, if he wants somebody to pick him up or for an unknown reason that we cannot figure out. Thankfully, most of the time we do figure it out. He is familiar with the symbol of milk (bottle of milk) by touching the bottle, the bottle cap and nipple and starts to bring it to his mouth. He barely calms down when we sign milk, squeezing his forearm, as if to say, "To heck with recognizing the symbol, give me the bottle!"

Orion's likes:

Orion loves bathtime. He loves it when we drag fabrics over his face and body, he shows it by smiling. We recently discovered he liked tickling his back along his spine and neck, again by smiling widely that his gums show. :) He occasionally smiles if we kiss his cheeks and touch his chin, lips and nose.

More Little Accomplishments:

While we were at PIP last monday (11/29), Orion managed to put the pacifier in his mouth by himself! Big people usually help him with his pacifier, it is still frustrating for him so we help him but that was the one time he made it!

Orion is growing wonderfully (physically he is a long and lean little guy: he measured 26.5" long at 4 months) it's easy to overlook the fact he hasn't lifted his head off the surface when he's on his stomach. We've gotten tips from two different physical therapists (PIP and Prince George's County ITP) to use with him. At PIP, I've also met with a lady who works out of U of MD's Connections Beyond Sight and Sound, she confirms many blind babies don't like tummy time but they really need to do it rather than skip it going straight to being able to sit up. Tummy time helps develop shoulder and arm strength and ultimately develop sensitive hands for exploring.

Tactile exploration:

He now actively explores the length of the bottle.

We now noticed, and not sure when it started, but he is reaching out and seeking what is in his reach by feeling with his hands out on his sides, not quite like but similar to how we make angels in snow with our arms. He has found his pacifier and brings it to his face. He feels people's hands, moving up and down a side or both sides. He has such a tender touch! I noticed that when people want him to feel something, he feels it and feels the other parts of the hand and the person corrects him by showing him the symbol again but I suspect Orion wants to see if there's anything else interesting on the hand. I know I have yet to learn how to optimize his first touch/meeting with people, for example, when we let him explore the hand and if he's 'done', should his hands be reintroduced to the symbol again?

During a recent Prince George's county ITP visit, Orion accepted the firmer texture of a bumpy textured ball. Up to this point he had preferred soft toys and fabrics. After the home visit, I found Orion playing with a hard plastic sphere (with lines like a soccer ball) with a jingling ball inside. This was also part of the play gym. He was holding on the sphere with both hands and tasting it. This is recorded in the video at the bottom of this blog post.

The oval shaped flesh things on the sides of Orion's head:

Orion IS profoundly deaf, yet there are too many coincidences. He is also pretty vocal when he gets started, ahh-ahh and ooo's, especially when he's in his play gym (with dangling objects). Orion will get hearing aids later this week and we'll see how that goes. He is a candidate for cochlear implants but since we're trying out the hearing aids, we need to commit 6 months with the hearing aids before going down the CI avenue. On November 15th, the CI doctor said Orion could have an implant as soon as he is 9 or 10 months old. Generally, babies get their implant when they are around 12 months old. This doctor has been doing CI surgery on children for decades. I believe the early time line is due to Orion being deaf AND blind.

Orion and the environment:

Thomas just got a tip from an audiologist who used to work at a school for the blind: 80% of what we know, we learned through our eyes. We don't have the source of this information but it certainly makes sense. You learn the colors, shapes, home environment, family members, daily habits, etc. by looking with your eyes. Very likely before you even knew their labels/names. You'd know which room you are sitting in if you were just set down there. That will not be the case with Orion or any other deaf-blind child. They have to feel everything, go OUT to everything to build up in the mind what's around them. Ideally, we should be baby-wearing Orion and having him touch things wherever we go. Orion's OK if I wear him in the baby sling as long as I also hold his head in my arm; we've done this since he was born. When I learned this 'fact', I pulled out the Baby Bjorn carrier (where babies are upright, and facing mommy or daddy until they are able to hold their head up). It'll be easier on our arms but Orion doesn't like that carrier yet. He has plenty of time to get used to it.

It is such a joy to see his little accomplishments. I continue to enjoy his babyhood. I could do away with the lack of sleep, tho.



Yet another afternoon exploring in the play gym/little room. (December 2, 2010).

Sooner or later I will share with you what we picked up at a recent 'Braille Babies' workshop that took place on November 20th. Thanks for reading!