Sunday, December 5, 2010

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.


(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!


  1. Heather - This is such a treasure load of information about our baby boy and great descriptions of how he's doing, what he's doing, and what may be the next steps. Thank you so much for taking the time to share with us. He's a lucky boy to have joined such a loving and committed family, who I know will make sure he has everything he needs. ILY, Mom

  2. wow cool bean, Orion got a fantanstic (sp?) momma and dadda! you guys rock oh yes, cool brother and sister!

  3. Hi Hex, thanks for sharing Orion's milestones. I've always enjoyed reading your blog (I am a blog reader big time, but don't have one myself -- maybe I should!) Orion is such a cutie pie!!! I just want to kiss him into pieces! Bless you and Tom for being such wonderful and loving parents! Hope we get to see eachother again.

  4. Heather: I so enjoy reading your baby-blog ... I know that millions of others would, too. Certainly hope that you'll publish Orion's growth and development patterns commercially one day. I'll stand in line for an autographed copy (right behind your uncle Frank)!

  5. I love this blog. I am really learning a lot from this. Keep it up, please. I may have babies someday.


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