Monday, August 29, 2011

Mutually Comfortable

Orion's started doing it earlier this summer for the first time. PAH! Finally after months of using my hand to hold the back of his neck or head from going all the way backwards away from me, Orion will rest his head on my shoulder. This was my favorite baby position with my first two, Skyler and Anastasia. Now I have the pleasure of Orion often relaxing on my shoulder. Finally! He is a HEAVY boy getting heavier, nearly 24 pounds and just over 31 inches long at 13 months old. Just in time... for now!


August 20, 2011

Saturday, August 13, 2011

Cochlear Implant, It Is

The CI Surgery
The morning of August 9, 2011, I was able to carry our alert Orion into the operating room where he fought the funny gas. I wish there were a better way. I hope he doesn't remember fighting it. Orion's surgery was only an hour long. The surgeon informed me that he was able to fit everything in completely. Even though I got into recovery room to see him shortly after completion around 9:40 a.m., we were discharged much later, nearly 2:30 p.m. His oxygen levels were playing games once again, going over and under 90 but he still had nice breaths and great skin color. Thomas had to stay home with Skyler and Tasia since we couldn't think of anyone who was available on a workday to watch our kids.

All week, Orion had swelling on the right side of his head and a fever in the 101's. On Friday, the temperature finally dropped to the 100's and then 99's, 98's on Saturday (Aug 13th). He has been taking antibiotics as well as Tylenol with codeine mixed in as prescribed.

Tonight (Saturday), Orion's finally had a completely Orion night after a sore, sleepy week. Wiggling around and using his legs to push and hold himself in semi-head/arm stands in his crib. Finally.

We'll see what happens at his cochlear implant's (CI) first activation on September 12th. This activation will happen over 2 days, September 12 and 13. Friends have reported activation was a "weird kind of painful" experience so I'm glad this one will be gradual.

The Cochlear Implant Decision
Going ahead with the CI didn't come easily for us.

One major concern was osteopetrosis. (It's not to be confused with osteoporosis.) Osteopetrosis is the unusual hardening or thickening of the bones to the point where there is little or no calcium reabsorption. Meaning if a bone breaks, it'll take forever to heal or never. Orion went to a skeletal dysplasia clinic at Children's Hospital (DC) sometime during the spring, where it hasn't been confirmed or ruled out that he has osteopetrosis. It was brought to our attention when Orion was hospitalized at Children's for a week back in Jan/Feb 2011 with a respiratory virus. They took a chest x-ray to check for pneumonia. They didn't find pneumonia but found dense bones that appeared so white on the x-ray that got the ball rolling on trying to get a diagnosis. After Orion was discharged, I googled "osteopetrosis". That was a bad idea. (The Internet is a wonderful place, and a horrible place.) If you do the same, you'll understand why. The first thing that came to mind what a cruel irony it is for a deafblind person, who is likely to have more falls than a sighted person, to have this condition.

The good thing is that the geneticist felt if Orion had osteopetrosis, it was a milder form. It can be managed with medication. The more serious form requires a marrow transplant. Orion has had x-rays done again and what's left is the DNA results to come back. It would be even better to confirm it is only part of the Withrow hardheadedness!

What's also interesting is that osteopetrosis can cause deafness and blindness due to it compressing and cutting off nerves. Orion is already deafblind due to some other reason. Since Orion did have responses to loud sounds wearing hearing aids, we were able to conclude that his auditory nerve wasn't 'cut off'.

When Thomas and I first discussed the possibility of CIs for Orion, one of us was for it and the other wasn't; as time grew nearer, we actually switched sides! In the end, we both agreed to go ahead.

The other major concern was language and risk. We looked all over for information through the Internet: websites, powerpoint presentations, and articles as well as dialogue and discussions with friends, educators and service providers. (You can visit "Orion: March 2011 Update" where I mention 2 sources late in the blog post.) It is agreed among people who work with Deafblind children that there is not enough information and research on the experience and benefits of cochlear implants for Deafblind children. Thomas and I needed more information, we didn't want to have to try and see how the CI works for our son (guinea pig). There were several perspectives we appreciated that helped us go ahead. Statistics from two or three sources showed that congenitally deafblind children's communication improved (and that does not include speaking, which they didn't anyway). CIs can increase environmental awareness (and I expect it to also pique Orion's curiosity) and safety. Orion's world is only as big as he can touch it. With a little more information from his environment, his world should increase in size to as far as he can listen. If it turns out he can hear with the CI, it is guaranteed that he's going to be annoyed like the rest of us who can hear our dogs barking at squirrels, birds and leaves. Another associated area of concern is keeping the auditory habilitation meaningful, considerate and fun for Orion as a Deafblind child.

It might interest you to read an online article about a study of only 5 deafblind children with CIs. Congenitally Deafblind Children and Cochear Impants: Effects on Communication, Oxford Journals, Journal of Deaf Studies and Deaf Education, http://jdsde.oxfordjournals.org/content/14/2/278.full.

I've mused about the functions of the ear and wished there were an "optical implant". (There are retinal implants that are in development for those who have lost vision via deterioration of their retina.) I realize that the current availability of cochlear implants is due to the seemingly primitive function of hearing in comparison to the function of seeing. Sound waves physically hit the interior of the ears but sight is silent and much more complex, mysterious, nearly magical in how it works.

Communication-wise, we are still using touch and object cues with Orion. We try to entice him to put his hands on ours so we could sign to him. (This is called tactile signing.) He does sometimes, most of the time these days he doesn't so we still use touch/object cues.

Everyone in our household uses ASL, including our hearing daughter. We hope with the CI, Orion's curiosity is encouraged at an earlier age about his surroundings than if we didn't go ahead with the CI. Curiosity and experience should stimulate his knowledge and vocabulary. Conveniently, tactile signing is already available in our home. All of this learning and communication is not going to happen quickly, though. (At a recent CBSS workshop in June 2011, Dr. Linda Mamer introduced to us that Deafblindness is an "information gathering disability." This hit Thomas and I as the best one-liner, in a nutshell sentence that describes what kind of disability Deafblindness is!) I expect this to take a long time. I'll take it one day at a time. Of course it's more enjoyable to share the process with others. No objections at all if Orion's progress comes along sooner. We'll post any progress here on my blog.

Reaching Out
We've found Orion reaching out with his arms when his big brother Skyler plays with him. Orion also reached out while in his highchair at a recent mealtime. When I put my hand in Orion's hand, Thomas saw him become excited. Simply adorable!


Now with all I have said... I wonder if one day our teen Orion will complain about my going on about him in this post and others. Orion, people are interested in you, our family's experience and we hope what we learn and share here will help and/or enlighten readers, connect with individuals who are Deafblind and/or have other "disabilities" and their educators and more, during our quest to enable you to reach your full potential.




Orion checks out an extra candle while the birthday candle awaits lighting.

Monday, August 8, 2011

Slideshow Video: Orion's First 12 Months

video

Orion Theodore's First 12 Months (1m 22s)

Saturday, August 6, 2011

Orion: Summer Update

It's been a while since I talked about Orion's progress. Included in this post is his physical and eating progress and where we are with his cochlear implant candidacy process.

Physical Progress (As of late June)
Orion constantly, gradually improved his head control, now he is starting to control his trunk/shoulder better. I've done some exercises with Orion over the last few weeks, various and inconsistent but the one exercise I always did and often was the pull-ups. When Orion's laying on his back, I bend his legs so his feet are flat on the floor then after touching his upper arms to give him a heads-up on what's going to happen, I lift him up by his arms to a seated position. He's better about keeping his head under control and in line with his body, along with a really cute 'working hard' facial expression. His head used to just drop/hang back through everything.) Thanks to all the physical therapists who work with Orion! Go, go, Orion, go!

We also have him seated between my legs with his back to me. Orion likes to play with certain toys while sitting in that position. Without a toy, he'd squirm his way back to a laying position. During a June weekend at a little friend's birthday party, we sat together in a few inches of cool splash park water and visited with friends. Orion's feet were at an upright water jet and he did not withdraw his limbs! The fun part was we could share with friends Orion's little accomplishments and happiness.

Skyler went to summer school, he seemed to enjoy himself. He counted from 1 to 100, then up to 117. He was soooo proud! (So are we!)

June 29, 2011: Orion ate a sweet potato. Not from the baby food jar but a microwaved, cooled and mashed-to-lumps sweet potato. He likes sweet potatoes so it was worth the challenge of scooping some up with his fingers. During this process, I think he noticed his nose. He put a finger barely up a nostril and held it there for a little bit. Self-discovery today, tomorrow what? :)

Orion enjoys pulling blankets to his face and over his head. Depending on the situation, he shrieks happily.

He's been able to lift his head off the mattress or floor when he's on his knees and hands while someone holds his chest in place. This tells me that this will be his next, "Look, no hands (adult helping hands)!"

Early August Update:
Orion's head control is constantly improving to where I can hold him under his arms, he can keep it in place. Even when I bounce him carefully on my knee. He still likes to hang his head back. I realized we're his enablers whenever we touch the back of his head or neck because he will then push his head back. If I avoid it he'll manage his head on his own somehow. Also, whenever we carry Orion chest-down (facing the floor) he will lift his head up. When we leave him alone on the floor while on his tummy, he doesn't.

Eating
He's switched over to whole milk and some solid foods have been added to his diet which is still mostly textured "stage 3" baby food and cereal puffs. We've mashed some sweet potato, cut bananas, strips of toast, offered rice and spaghetti. His favorite food so far is birthday cake. Of course! I've been waiting for him to bring his upper body forward while in the highchair all this time and it took a slice of my birthday cake on a plate for him to do that. (See video)

video


Eyes: New Scleral Shells

Orion's new clear scleral shells arrived via FedEx the day before we flew back to Maryland. I took the smaller, 'older' shells out and put in the new bigger shells. Their size surprised me and I wondered just how it would fit in. With some Ocuglide and fending off Orion's curious hands (felt like there were 8 of them) I slipped them in. They look great. Not one peep of objection from Orion.

He continues to LOVE water.


Orion is interested in the source of his baby food. Here comes the huge meal messes! It will be worth it because he'll experience and learn so much from however he chooses to interact with his food.





July 31, 2011



Cochlear Implant
Orion is going to Johns Hopkins early morning Tuesday, August 9th for cochlear implant (CI) surgery. It'll be on his right side. I dread any kind of surgery, especially on our baby. We finished the last of many required appointments with a psychology visit at Johns Hopkins in late June. This decision did not come easily for Thomas and I, as well as another condition Orion may have that could obstruct the benefits of a CI, which I will share in another post.



Sleeping Orion (8/2/2011).

July in Washington State

In addition to Orion's birthday afternoon at Golden Gardens during our stay, we also visited Green Lake (Seattle) a couple times; Brackett's Landing (Edmonds) a couple times; Redondo Beach; friend's homes (thank you so much, you've all been fun!); Vancouver, WA for my fun Washington School for the Deaf class reunion; Portland, OR; Mount St. Helens; and we had delicious ice cream cones in Kingston via ferry from Edmonds. If any of you happen to see Frida's Mexican Restaurant in Mill Creek, WA, please go walk in there and be prepared to eat the best Mexican food you've ever had in your life. The food Thomas and I had there made Chevys and On The Border taste like Taco Bell. I am adding that restaurant to my list of must-eat-at for the next time we return to Washington. The other fine establishments are Dick's Drive-In, Burgermaster, the Ranch, Ivar's... I could go on. (I think I did gain some weight, darn it.) We did plenty, yet there were a few places and people we didn't get to meet. Shoot. I didn't get any of my brother's delicious chicken Pad Thai. Next time, Jack!

I loved that my family and Washington friends met Orion and shared fun times with Thomas, Skyler and Tasia. On a somber note, we had my grandma's memorial service on July 30th. Dorothea Mary (Pfister) Nordstrand, also known as "Dixie" or to at least me as "Gma", passed away on May 16th. She, my aunt and uncle (or to my kids, great aunt and gruncle), set up "Dixie Press" where we can read online her stories and family news. She's been a role model, there's so much more about her. She's someone you'd read about and I feel so fortunate to have known her as my grandmother. Some of us have been able to read advance copies of her book, which she saw the proofs of, "Pork Neckbones, Sauerkraut & Rutabagas, Memories of My Greenlake Girlhood". A thousand copies will be available sometime this month for purchase.

We were glad to be in the Pacific Northwest while most of our country sweltered under the heat wave. It was in the low 70's, high 60's most of the time during our stay. What a nice break!

Now we are home in Maryland. ALL of us are still influenced by Pacific Standard Time!



Sunset at Brackett's Landing, Edmonds, WA.

















A rare family photo, at International Rose Test Garden, Portland, OR.




Orion and
I at Johnston Ridge Observatory. Even though Mount St. Helens was clouded over, it was an amazing view. We did see it from afar the day before as we drove up the Oregon side of the Columbia River from Portland to Longview, WA. We'll be back!

Orion's First Birthday Cupcake

video
Orion's First Birthday was at Golden Gardens, a favorite beach along the Puget Sound in northwest Seattle. It was on an overcast Tuesday, July 19, 2011, his actual birthday. The video is 5+ minutes long.

We flew to Washington state on July 11th for a 3 1/2 week stay. We had his 1st birthday celebration at Golden Gardens on July 19th, his actual birthday. (Know what? My mom pulled out a Lightfoot family photo album and showed me a few photos of my first birthday, also at Golden Gardens!) Seattle's been having below-average temperatures and it showed it on his birthday. At least it didn't rain when were were there. Skyler, Tasia and friends had fun playing in the sand, moving logs, digging around, being buried. Family and friends came to meet Orion and share yummy cupcakes.

Now, the highlight of the day was the cupcake mauling and the sacrificial victim was a carrot cupcake generously topped with cream cheese icing. Mother Nature helped blow out the candle as soon as I lit it. Nice to see her so motivated. (I let Orion check out the candle a little bit before sticking it on the cupcake.) I couldn't help being proud and amused by the good job he did eating something new for the first time! (Or is it, "About time!") It's better to just see the video.



One of Orion's First Birthday photos. I loved how we can repurpose the letter "O" from "one" to "Orion".