Monday, December 19, 2011

Jingle Bell Reach

December 8, 2011

During the morning home visit by Orion's teachers from Prince George's County, a set of sleigh bells were jingled near Orion.  Orion, laying down, reached out with his left arm as if to find the source of sound.  That very afternoon at Johns Hopkins, I shared the story with Orion's auditory trainer (sorry I don't recall the right title).  She has been using jingle bells with Orion during past sessions and during this session she added a new set of jingle bells.  She shook it a long time several times before Orion, sitting up supported between my legs, reached out with both hands. Coooool! The reaching out was not a fluke. To me, this is important not just because he heard it but that he was curious about something in his environment.

Since then, we haven't seen this reaching.  We haven't been able to keep his CI on long enough or have to take it off since he apparently has lower tolerance due to a current ear infection.

Wednesday, November 30, 2011

"Mom"

I first realized the overuse of Mom while reading a blogpost at "What I Would Tell You", by Julie Keon, http://www.whatiwouldtellyou.com/weblog/mom-isnt-the-word/.  This is a heart-touching blog.  There's reminiscing I can relate to as well as  things and perspectives to reflect on.

I wouldn't know how annoying being called Mom is in the hospital setting.  I'd like to really understand whatever it is they're saying. I'd love to be annoyed by repetitive "Mom"s because it'd mean I understand what the doctor or nurse says the first time around, even if the conversation is not with me. Mom said, Mom claims, Mom denies, Mom reports, etc...  I've read those in reports.

It's precious when your child calls you, "Mom", yes, but not every minute or two! Especially after you just got your train of thought back on the tracks.  Aaaah!

When I had to bring Tasia to the E.R. at Children's in September for a concerning abscess in her leg, the first sign of overusing "Mom" came up.  Tasia matter of fact-ly told a doctor that my name was Heather.  The doctor chuckled, acknowledged Tasia and called me Heather.  I can imagine how weird it is for Tasia to have doctors call me Mom when they are clearly not one of her siblings!

Tasia was admitted and discharged more than 24 hours later.  It was a different experience while staying with Tasia from my experience with Orion.  I never knew doctors could be entertaining!  Next time, I'll tell them to look for money in MY ears then skip off to the vending machines.

Thursday, November 24, 2011

Thanking the Stars

Happy Thanksgiving!   Recently, I was describing my wish to protect people's privacy with our blog.  Friends, teachers and service providers have remained nameless out of respect for their privacy. (Feel free  to let me know you don't mind me recognizing you by name.) Organizations, programs, fellow bloggers and presenters' names, yes, I share because I want you to know how many wonderful programs and contacts there are out there that you can seek if you need support and guidance.  I never forgot thinking during my pregnancy with Orion and his early months on the outside that there wasn't enough information out there.  I'm glad I learned the opposite is true, there's so many people and resources out here!   I want to make it clear that we have boundless thanks for Orion's extended family, teachers, service providers, consultants, friends, little friends and their moms and dads for being a part of Orion's life whether it is little or profound, directly or indirectly, cross-country or right here with us. Each one of you count.  Every one of you are a twinkle in Orion's sky. Thank You!   Hugs, The Withrow Family

Wednesday, November 2, 2011

Orion, Early Fall 2011 Update

One early morning (late September or early October) at 6 a.m. Orion was still awake!  So, I figured he's hungry.  I set him in his highchair and put the tray on.  Then it happened.  He leaned forward and brought his head down and attempted to lick the tray and brought his head back up. OK! You're hungry!!

Skyler's 7th birthday party was at an indoor splash park.  This was fun for all kids there and it was especially fun to watch Orion happily flap his arms wildly as his uncle held him in the water.  The water wasn't 'bathtime warm', it was definitely cooler.  He probably could've generated electricity to power a small village with his excited movements.  A big plus was that Orion's paternal grandpa (Dan), maternal grandma (Elaine) and uncle (Dale) could join us for Skyler's birthday.

Orion will have home visits from his D/HH teacher every week, as decided during his annual review (IFSP) with PG County Infants and Toddlers program.

10/27/2011: Orion's first auditory habilitation session at Johns Hopkins.  Our dear DB technical support person from CBSS was present.  I thought it went well, based on Orion's happiness and willingly using his hands to touch. He will go weekly on Thursday afternoons.

10/31/2011:
Tasia wrote 3 sentences on an online PBS Kids story builder:
"Anastasia;is;5;skyler;is;6 
mymomandmydad
myorionis1"
[After press time, oops, she remembered Skyler is 7 now.]


I accompanied Orion, with his skeleton pajamas/costume, for his school picture sitting at Kendall School  What's one way to make Orion smile for the camera?  It helped I had wonderful assistants. :)  One teacher fanned Orion with a whiteboard causing him to smile for the camera.  One fellow mom was behind photographer to 'will' her take pictures at the right times. I am looking forward to when I get the prints.  The group then went trick-or-treating at the front offices.  Orion slept through it.  I swear I gave him his treats... most of it anyway.

At the end of class, I was able to set him up so I could paint his feet and hands to print onto paper. He explored a paint-soaked paintbrush.  He really checked out the drippy brush, squished it, moved it around. He really felt it.  I felt privileged to witness his discovery.

11/2/2011:
Orion gets kissed by another cute little girl in PIP.  "Awww!" was heard all around. Lucky guy.

Tasia successfully hops over a swing of the jump rope for the first time.

Orion's Touch

He has been seen putting his foot on people's throats and chests.  He has explored a few people's faces pretty well.  Last week, Orion had his hands IN Thomas' mouth for a good minute, feeling around inside and out.  It was awesome to watch, I encouraged Thomas to stay 'available'.  So funny.  This morning in Kendall's PIP room, Orion checked out my face really good, including my nose (I lightly squeezed his nose, too, in response).  Then moments later he did the same thing to his teacher.  With Orion, I have to say, "Wear glasses at your own risk!"

Orion's CI
He's hearing things.  He seems to like it when he hears sing-songy voices. He has been startled by drums.  When you clap your hands his eyes will blink.  Members of "Team Orion" are just starting to observe and collect information to get a better picture of what his hearing is like with his CI.  One big challenge is keeping his processor/magnet coil on his head.  I would say it's on him as much as 3-4 hours a day when we'd like it to be on so much more.  It'd mean more experience with sound.  I have to admit it is odd seeing this coming from me but I'm happy we're trying 'everything' with Orion.  Auditory information just comes to you, whether you like it or not.  You can lounge around and sound happens and you'd know it. (Hearing and sight is a distance sense.) While touch cues/tactile signs require effort, whether it is hard or so easy. It's an up close information transmittal. 

He Doesn't See, He Still Does

Orion has crossed his legs at the knee while in the stroller.  I thought this was so cute... he's 15 months old and has never seen anyone cross their legs before.  So, as he's doing things, I think about whether it's something he learned or something that just happened, unplanned or from within. I feel the same way about his precious smiles.
  
Orion's Physical Progress
His head control is so much stronger when he's upright. When I pick him up just like I would any baby his age, he'd hold his head up, hold/hug my shoulders for a minute then put his head down on my shoulder.  We're still working on him to sit up on his bottom with support from his hands/arm on the ground.  He can control the forward/backward movement of his trunk but if we let go he'd go down on either side (left or right).  He protests by pushing himself back into the person supporting him and tries to slide down until he's flat on the ground.  While he's fighting it, he's actually making himself stronger.  It's still progress! (In the picture below, you can see him keeping his head up while his uncle is making me nervous! Why? He is 'not supposed to be able' to stand but he was anyway, briefly.)

Orion's song
Tasia and I had fun with the Bingo song modified to Orion's song.

There was a little boy with white hair,
And Orion was his name-o,
O, R, I-O-N
O, R, I-O-N
O, R, I-O-N
And Orion was his name-o!

Sunday, October 9, 2011

Orion's Highchair Adventures: Drinking Milk

This video shows Orion holding up his bottle of milk at the end of his feeding.  Up until recently, we'd lay Orion down for him to drink his bottle.  We totally appreciate progress no matter what rate it happens at.  Slow, but still sweet and sure.
video

Sunday, October 2, 2011

www.rachelcoleman.com

Thanks to my friend, D, who brought this blog post to my attention.
I just read a great blog post regarding using ASL "even with cochlear implants". Rachel Coleman, from 'Signing Times', nails it with her two cents. 
Rachel discusses her daughter Leah, who you've probably seen in the 'Signing Times' videos, getting a cochlear implant at an older age. In spite of this change and being told by an ENT to not sign, she continues to use ASL and her pre-existing English literacy skills. She shares how Leah is a successful implant user and also clears up many misconceptions.
She has guts.  Bravo, Rachel. 
I enjoyed reading other posts at her blog, too.
You can read her CI post at http://www.rachelcoleman.com/2011/09/07/my-two-cents-cochlear-implants/

Wednesday, September 28, 2011

Orion's Eyes Meet Sunlight

video
When one says a child is blind, it doesn't mean the child is totally blind. It's a range of different vision issues. I have taken Orion to opthalmologists (I count 3) and the consensus is that he is totally blind (no usable vision).  I beg to differ, I think he reacts to light (not shapes or blobs, just strong light).  I've always brought up that I saw him react to camera flashes and sunlight.  That's all.  It ends up with what feels like me talking to myself.

Just being able to detect light is a huge difference than no vision at all.  There's the Non-24 Hour Sleep-Wake Syndrome that is common with people who are totally blind.  For a while I thought maybe Orion had this, but hey, he's still a baby and they usually wake up at night.  So far, so good for Orion. (Good for Mom and Dad, too.)

So, with the tip I remembered from a CBSS Summer Institute workshop Thomas and I took back in June, I recorded Orion's reaction, or lack of, to sunlight.  So, can you please look at this video and tell me what you think?

I'm bringing Orion to a pediatric/genetic opthalmologist at the National Eye Institute at the National Institute of Health (NEI/NIH) in Bethesda, MD in November.  Children like Orion is right up his alley.  I'm bringing this video, too. I am very curious about what he will say.

Sunday, September 25, 2011

Orion's CI Activation

If you are new to this blog, I invite you to read an earlier post to learn about our decision to go ahead with the CI for Orion, "Cochlear Implant, It is".

Since Orion missed his first 2 CI (cochlear implant) activation appointments while in Children's National, I called Johns Hopkins on Monday (9/19) to see about adding 2 new appointments to 'work' with his already scheduled "3rd" CI appointment on 9/22.  He could come in for activation the next day, Tuesday the 20th.  So, there we go.

The external part of Orion's CI is white.  I'd like to say Apple white.  I oughta find a mini Apple sticker and put it on the magnet or processor.  Know where I can find one?

Orion was sleeping all the way from home, through them hanging the processor on his ear and the magnet sticking to his head.  They turned whatever it was, on, and Orion opened his eyes and turned his head then in a bit he started crying.  I understand the electrodes were being turned on one by one (there's many on the internal part, how many, I don't remember), and the audiologist was finding the levels he was comfortable with.  Unfortunately that includes going up to where it makes Orion cry, face turning red, then turn it down. Over and over again.

We went home with the CI on and a huge case of CI parts and accessories. Some of you might remember when your kid got a new hearing aid, there's this cute little lunchbox sized case...well, this is no lunchbox, it's more toward the size of an airplane carry-on.

The second part of the activation was on Thursday (9/22), he cried only once and was comfortable through the rest.  We met a lady, who will work with Orion on auditory 'habilitation.  She joined in for this appointment and told me Orion was doing much better... she'd heard him two offices over on Tuesday.  Yup, that makes sense.  Orion usually lets the whole lab and internal medicine waiting areas know he's getting his blood drawn, too.

video

Saturday, September 24, 2011

Deafblind and in a Hospital?

Now with this recent experience with Orion at Children's National you know I was frustrated.

Imagine what it'd be like for a Deafblind child or adult on their own in a hospital.  They'd need even more communication access than I can imagine I'd need as a Deaf person. 

Throw out the Video Remote Interpreter; get me a live, 24/7 deafblind tactile interpreter!

Wednesday, September 21, 2011

The Fall before Fall



Orion WILL check out your hand and jewelry.




We had a pleasant Labor Day Weekend, our family went to Rehoboth Beach on Sunday where we met friends big and small to play. It was all of our kids' first time 'touching' the Atlantic Ocean. Skyler and Tasia have been along the shores of the Pacific in Taiwan and all three kids have frequented the Puget Sound in Washington state. Many firsts continued when Orion checked out Swedish pancakes and strawberries on Monday and we visited a fellow little friend in the afternoon. Such a nice weekend before the trying time for my family.

On Tuesday morning (9/6), Orion fell off our bed, 3 feet onto the hardwood floor. An eyeshadow bruise developed over his left eye and a straight line coming from it back over his left ear. (His CI was implanted on the right side.) The line disappeared soon enough. Orion's new movement skills, one is crawling a bit backwards with his forehead still on the surface, brings new risks.

I took Orion to urgent care in the evening after he vomited late in the afternoon. He had a CT done because the doctor was unable to look at or through his little eyes. Orion vomited again, big time, in the waiting room while waiting for the doctor to review the results. The doctor saw a mass.

Instead of returning to the exam room, we were directed to triage where they stuck Orion one time too many looking for a vein. They were clearly interested in more ideas when they let an EMT make a suggestion: stick a needle perpendicularly into the bone of his lower leg. This is where I can clearly see I cannot afford to have 100% faith in their decisions, simply because maybe they need to be more patient and they don't know Orion through and through. I said no, not that. Orion has possible osteopetrosis. No messing with his bones. It all ended with the doctor putting in the IV herself via Orion's foot. One nurse suggested I take Orion directly to Children's National next time he gets hurt. I will seriously consider that! He has to have an IV put in for his *whee*! ambulance ride. By taking him straight to Children's we can get him faster attention and maybe less needle sticking. We arrived at the hospital a little after midnight and finally was admitted around 4 a.m.-ish.

What I thought was going to be an 'overnight' observation turned into a longer stay. Ten days at Children's. It was boring, lots of waiting around in anticipation of results, no-feed orders before sedated procedures that started hours after it should have. It was frustrating for me as a Deaf person and that Thomas was unable to drive due to an expired license. (His license renewal came up right after the retina detachment in his good eye.)

Children's is a medically resourceful hospital. I totally appreciate the doctors, the many nurses, the delightfully colorful environment, the yummy chicken cheesteak from the cafeteria grill; but the overall access to communication for a Deaf person is not up to par. The best asset they had there were the VRIs (Video Remote Interpreters) that were resourceful for communicating with the doctors and nurses. It's basically a computer supplied with wi-fi and a webcam on it's own pedestal on wheels that can be moved from room to room or floor to floor. Unfortunately it took too long in between the operator receiving the language request to the time an ASL interpreter connected back to us on the VRI monitor. Two to six minutes... it's not fast enough. I can call Purple VRS (Video Relay Service) on our 3G iPad and get someone in less than 20-30 seconds. It's not immune to dropped calls and certainly makes me crazy!

I finally shed some tears of frustration on Wednesday, Day 8. A social worker came on Thursday and heard me out, of course, using the VRI. I made constructive suggestions, tossing in names of companies and Gallaudet University. The VRI is something Children's already have and I certainly could use it if I were allowed to dial in my own numbers to call home or a relay service instead of it stuck with a dedicated button straight to the VRI operator. I really do hope the hospital will follow through on it so that no one has to deal with technical difficulties when they should be focusing on their child. The social worker said it'd be done.
Our Earth angel.
I learned a lot of tips during this stay, within the hospital and outside. I can ask the nurse to print out the reports for me to read and fully digest what was going on. There's a light gadget called a venoscope which is used upon or behind the hand, arm or slender body parts to help identify veins. Remember sticking a flashlight under your closed fingers and you could see your bones? A nurse used a venoscope on Orion and got a vein on the very first attempt.

Thomas and the kids were graciously given rides to the hospital, several different times, by a friend. If you're reading this, yes, that's you. We thank you!

Hanging out.  Yes, we spent time on the floor. (Shortly after this picture, we got a mat from physical therapy.)

Sanity saving east view.

One of Team Orion's members stopped by to pay a visit and bring me... gasp... clean clothes from Skyler's backpack at school.

Also memorable is the friend who brought me the caramel cream frappuccino, no whip. Thank you!

Orion missed 2 CI activation appointments on the 12th and 13th, Monday and Tuesday.

I drove home several times for a couple hours each time. I was able to go to Skyler's Back to School Night (Day 9) but I missed Tasia's Back to School Night (Day 8). I was pleased with the fact that the people at her school took it into their own hands to request an ASL interpreter without us asking them. Thomas and the kids were able to go. They rock! Yes, this is in Prince George's county... the hidden gem of Maryland. Er, well, I guess it's not a secret anymore after this.

Orion had 3 CTs, two were sedated CTs earlier during his stay that couldn't really tell the doctors what the mass was. He had a conventional angiogram on Day 7. A catheter was put in the femoral artery and a tube was fed up to his neck and they injected dye. They were able to identify what was going on in Orion's head that was eluding them for a week. It was a hematoma (bruise). Thank goodness! Not an aneurysm. So the problem was clearly identified and the last CT was on Day 10 and it was just to check the hematoma's size. Good news! The blood was reabsorbed. We could go home at last! We were discharged sometime past 11 p.m. and we got home just before midnight Friday night.

We're glad 10 days is a memory now. (See Orion in the crib?)

Orion's smiles were wide and preciously toothy. His widest yet. He KNOWS he is home. He was so sleepy and uninterested in the hospital. Now he's home and clearly happy. That makes us so very happy, too.

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".

Saturday, July 9, 2011

June 20-24: CBSS 2011 Summer Institute and YMCA

June 20-24 was a busy week for us. Orion is 11 months old here.















The Workshop provided by
CBSS
The workshop was awesome! Dr. Linda Mamer from British Columbia presented on "Communication Development and Instructional Strategies for Students with Deaf-blindness and/or Severe Disabilities". Enlightening, informative, empowering. I enjoyed the simulations, and examples of sensory perspectives (on DVD), demonstrations. My mind was tired from all the useful information but was happy at the same time.

I highly recommend ALL teachers take this workshop. Even for teachers who do not plan on working with deafblind and/or severely disabled children. This would be a great workshop for teachers of the Deaf so they're aware of the vision challenges a Deaf child may have even if he/she is not legally blind. The same goes for teachers of the visually impaired, to be aware of hearing issues and misconceptions. As a parent, I enjoyed learning more about approaches for Orion and the diverse children this workshop covered.

Workshop: Cues
What Thomas and I have been calling signs when communicating with Orion, we learned they're called touch cues. Pretty much what you first start using from scratch with a deafblind child. Thomas and I already knew about tactile signs since we've met Deafblind adults but we've always been wondering how does a Deafblind baby like our Orion get from where he is to a tactile-signing Deafblind adult. Through Linda's workshop, we saw the connection. We saw that we did the right thing starting with touch cues (Orion's first sign/cue was 'milk' at mere hours old!) and using it with object cues (what we've been calling symbols). "Milk" was presented with a bottle of milk. Orion's frequent object cues are his spoon, diaper (new ones every time, of course!), wipes, bottle of milk. I'm sure there's more objects he recognizes that we don't realize we use consistently with him. Now we need to start adding in more cues that represent things he does everyday anyway. These object cues need to be real. No miniatures, no plastic. My idea for "drive" or "car": we need to get a short length of seatbelt or car seat strap or the release button from an old carseat to present to Orion before we put him in his carseat. No little cars.

Another approach I love and was discussed at the workshop is using hand under hand. Orion at nearly 1 year old is at the threshold, not yet crossed, of holding onto my hand when I sign normally from myself and not onto his body. I've been touching my thumb on his chin, knowing he only felt the thumb, not the rest of my open hand for "Mom". (We've wondered just when does a Deafblind child know to put his hands over the signer's hand.) I'm trying to transition to signing "Mom" on my own chin, sometimes Orion would hold onto my pinkie finger when I do. He laughs when I sign slowly only to sign it fast, changing speeds. Linda explained that eventually Orion will feel all of my hand and then my face where my thumb connects to the chin. Hand over hand is not only for using tactile signs but for showing the child his/her environment.

Thank you, CBSS, for bringing Linda to Maryland! Also, I agree the interpreters were awesome. So much information went through them at a high rate!

YMCA
During that week, we were so fortunate to have our niece Jodi join us at U of MD to watch/play with Orion at CBSS. He did really well. I loved having him with us for lunch. Skyler and Tasia went to a "Holiday Hoopla" camp at the closest YMCA to us.

Overall, they had fun. There were field trips nearly every day that week. It was "interesting" for Skyler because he did not have an interpreter for the first 2 days even though I provided contact information for 2 different interpreting agencies. "He's having fun [so everything must be fine]." Frown. This was also told to a teacher of Orion's who called on our behalf to inquire about the interpreter.

To help the camp director understand the perspective, we asked her to imagine the camp counselors of Skyler's group to not use their voice and communicate with all the campers through gestures and visual aids. Would she accept that? (She was so nice but she had NO idea what this does to a deaf child.) Finally some interpreters were scraped together to give Skyler access to the content discussed with the group.

Skyler had a 'favorite' interpreter who also wrote us a note on the last day. It turned out she had a master's degree in Deaf education and has worked with deafblind children at a school for the blind. Yet another person with a connection to deafblind children for us to know. Nice!

Tasia got a certificate "Camper of the Week" from the Holiday Hoopla group.

Friday, June 10, 2011

The STARband Helmet Graduate

Orion and Thomas during Memorial Day Weekend. (Photo by Jennifer Yost Ortiz)


Camping siblings.










Orion showed a clear sign he has problem solving skills. On May 16th, to eat a sweet potato puff, he picked it up in the palm of his hand from the tray, he wiped it off onto his bib until his fingertips arrived at the puff and picked it up and put it in his mouth. Again and again. Half of the puffs arrived at their final destination (either his mouth or on the seat, you can't go wrong with 50%).

Orion's STARband was retired on May 18th. His total head circumference grew 2 mm over 2 weeks and his asymmetry stayed the same even though I only managed to get the helmet on his head 3-6 hours a day if I even put it on that day. While wrapping up the appointment, Orion happened to smile big-time and I "interpreted" for him to the cranial remolding specialist, "That's good news!"

On May 24th, I took Orion to a rehabilitation service location in Laurel, MD for a physical therapy evaluation. This was done through Orion's doctor's referral. The evaluation showed he needed PT services, so we started right there. We are to go there for 30 minutes every week for the next 12 weeks. I am pleased with our efforts for Orion to get plenty of PT services! Orion now gets it from 3 locations: Parent-Infant Program at Kendall School; Prince George's County ITP home visits, and now this one in Laurel, MD. I could already see improvement. At PIP, Orion was seen willing to put his hand down on the ground for a couple seconds while sitting up (it used to be an immediate withdraw upon touch). Orion CAN hold his head midline quite well if he's sitting up with our support and his upper body is leaned forward. If he's upright (back at 90 degrees), his head flops back after a couple seconds. It will stay midline if we hold Orion's shoulders with our hands and use a few digits to hold his head forward. Yes, Orion's growing, he's getting used to/familiar with what his body can do, thanks to PT services.

Orion's clear scleral shells arrived via FedEx late May and I put the shells in. So easy. :) I feel so much better seeing his little blue eyes moving around knowing the access is there for light. Orion will visit the ocularist at the end of June.

2010-2011 PIP at Kendall is done for the summer but not quite done for Orion because there is ESY (Extended School Year) at the PIP room. We will continue to get home visits every 2 weeks from Prince George's County through the summer except for when we take off for Washington state. He'll be back to PIP in the Fall, I anticipate more participation from Orion, especially touching and exploring the environment. In the fall Skyler's moving onto 2nd Grade and Anastasia will finally start "formal" education: Kindergarten! Anyway, this afternoon at home, Skyler plopped a 14-inch long wrecking ball truck on Orion's lap and Orion immediately checked it out moving his hands along the length of the toy.

Thomas and I will be attending a Summer Institute workshop sponsored by CBSS (Connections Beyond Sight and Sound) at University of Maryland the week of June 20-24. The topic is "Communication Development and Instructional Strategies for Students with Deaf-blindness and/or Severe Disabilities", presented by Dr. Linda Mamer from the U of BC, Canada. (I remember going there to pick up my brother Jeremy from a hockey camp at U of BC. Really cool.) I'm looking forward to plenty of information... perhaps like standing in a golden glitter confetti shower and walking out with whatever sticks to me. :)

***Anastasia lost her first baby tooth on Wednesday night! (6/8/2011) This tooth she lost twice onto the floor that night. The first floor she lost it on was also white, oh boy, but she still found it again. The tooth fairy actually came even when she went to bed soooo late. Skyler saw what the tooth fairy left behind and is working more on his already-so-loose 2 front lower teeth. Trying to make a big haul, eh, Skyler? :)


Skyler and a longtime friend plays with water guns. (Photo by Jennifer Yost Ortiz)

Wednesday, May 18, 2011

Remembering Gma, Dorothea Nordstrand

















Dorothea Mary Pfister Nordstrand, my grandma, passed away the morning of May 16. She was 95 years old. She was an incredible person, a lot of people have been touched by Gma. It is difficult when I remember that I will not see her again.

There is plenty to appreciate about Gma, one is her writing. Her writing voice is wonderful as I got to know and appreciate her work when she started to really crank out articles and stories in her early 70's. She showed it was never too late and she wrote wonderfully. You can tell she had fun remembering places, events, travels, family members, friends, neighbors, plants, pets, ducks and a certain bug hiding out in someone's ear. She also researched and wrote history articles. Gma knew she has given us a gift that keeps on giving, in her compositions. She also has given us the gift of her love and friendship.

In our memories, her stories and who we are, her voice (or laughter) is still here with us.

You can visit Dixie Press to enjoy her collection of stories and see exactly what I'm talking about.

Sunday, May 15, 2011

Just Another Interesting Month for the Withrows

The kids, hanging out in between Skyler's flag football games on May 7th.




At Goddard Space Flight Visitor Center in Greenbelt, MD, May 14th.



Orion's Physical Development

Orion's getting more experienced with the cereal puffs. I noticed that if a puff is in the palm of a hand, he'll bring his other hand to try and pick the puff with his pincer grasp. Orion will eat nearly any baby food, with the exception of green beans as some of you may remember. So, we've been picking up combinations of baby food fruits or vegetables for him to eat.

Last night's bath was Orion's wildest ever. He wiggled and laughed so much. Kicking his legs together, buckling his body. Sucked on the washrag, tasted/felt the usual baby toy that accompanies his bath. It was so entertaining to watch him. Sorry no videos as he doesn't bathe alone in the tub. :)

I can see that if Orion could, he'd be crawling all over the place already if it weren't for his neck. I can say his arms are getting stronger, his neck's improving but just not there yet. He'd get up on 5 points using his head, hands and knees. He'd either go back down and go up again or roll over.

The Helmet

The 12-week goal has passed by for him wearing his STARband. The cranial specialist and I agreed we should go another 4 weeks when we last visited her on May 2nd. His cranial asymmetry on May 2nd was 8.6mm, he started out at 17mm. The goal is 6mm or less. It's hard to keep the STARband on Orion with all the warm weather we've been having. He'd cry until we take the band off. Poor baby. We're fortunate we started out wearing it nearly full time in early February. Orion KNOWS when I'm going to put the helmet on. I put the helmet on his chest, he brings his hands to the helmet, I sign helmet on his head (with one hand)... he starts crying right away each time lately!

Orion's Shells

We saw Orion's ocularist on April 26th. The ocularist will add more volume to make Orion's scleral shells bigger, thicker since his sockets have grown. Instead of adding on to Orion's current painted shells, he'll make new clear shells like the ones he started out with. Orion's real eyes are fascinating to me, I think they're cute. At the same time, I also want to make sure Orion gets all the access to light as he can. His painted shell has a clear pupil, yes, but I noticed his real pupil/iris of his left eye is not usually lined up with the shell's pupil so I figured he wasn't getting his light. It's not the ocularist's area to determine if Orion's getting light, that's the ophthalmologist's area. His ophthalmologist says Orion doesn't see anything. So here goes this mom, to make sure the opportunity is set up for him to look for light if he can. I will bring Orion to the National Eye Institute at NIH in Bethesda, soon. Orion's microphthalmia is right up a certain doctor's/deparment's alley researching eye diseases of children.

Thomas' Vision

Talking about eyes, Orion's dad, Thomas had a retina detachment in April and went into emergency surgery (vitrectomy) on April 15 to reattach his retina. What was supposed to be 2 hours or less took the surgeon 8 hours! Thomas came out to the recovery room at 2:30 a.m. on Saturday. It took us around 3-4 hours to wake him up and get him in the car. He didn't really wake up until his brother Dale, who was at our home watching the kids, and I set him down on the couch. Now, remember, he's thinking it was a 2 hour surgery, that it's still Friday night so you can imagine his bewilderment when we told him he had to go to a post-op appointment with the surgeon at 11 a.m. Saturday... in a few hours!

How did we tell him? Tactile signs. It was slow communicating. Thomas' vision his his left eye is not usable after multiple surgeries 12 years ago to reattach his retina/fix tears. So, with his right eye, he rested a lot. His eye looked the same or worse than a boxer's eye swollen shut. He kept his head down, facing the ground for 7 days so it'd heal properly with the support of the gas bubble injected in his eye. You could say we had 2 deaf-blind individuals in our home during that 1 1/2-2 week period. We got insight on what it's like for Orion. It's so easy to leave a deaf-blind person out of the going ons around him. As for entertainment, Thomas was easily bored because we're all visual-dependent. Not in Orion's case, we understand he'll have access to entertainment, interaction in his own way. It has been a very, very interesting 1 1/2 months... a whole 'nother story. We are so very grateful for the individuals who offered their time and help. It was a humbling experience and HUGE help to the family. Thomas is still on leave from work as his vision has not improved enough for reading with the ease he used to have. Forget about driving. For now, I'm still the family chauffeur.

Jury Duty!!

One last thing, as there still are plenty more to share, I got a called in for jury duty to happen in late May! In early April (before Thomas' detachment) I wrote a letter to the Clerk of the Circuit Court asking to be waived as I was the sole caretaker of 2 non-school aged children and one of them was deaf-blind and couldn't just be dropped onto the lap of just any babysitter. Request denied! What?! Unbelievable. So I went to work and got 2 doctor's notes- one from a pediatrician and one from Thomas' ophthalmologist and stuck that in with a 2nd letter, this time to a jury judge. Hope it works this time. I've always been curious what it's like showing up for jury duty, but come on, they got to me 6 years too late!

Wednesday, May 4, 2011

Musings and Milestars



Orion is 9 month old in this photo. It was a warm April day.


Only Among the Deaf

While discussing Orion with a group of Deaf people, a woman wanted me to clarify what his disabilities were, so she said, "Orion's blind, what else?"
"He's also deaf, " I say.
"Ohh, right!"

Thoughts on being a Deaf parent of a Deaf-Blind child

Orion's deafblindness and our being Deaf doesn't mean one less disability to learn about. "Half the battle's won", I've heard this regarding our situation but after reflecting, I realize it doesn't apply here even though it was well-intentioned. With deafblindness, the sum is more than the total of the two "parts". Still, I am comforted that sign language is behind us, practically an innate knowledge. We can apply that knowledge with creativity and what we've learned and will learn for communicating with and helping Orion gain an understanding of the world around him. We're hungry for tips, knowledge and experiences of other parents, teachers, paraprofessionals, DB interpreters, and DB individuals, so... if you've got it, you've got our full attention. :)

Orion's Milestars

April 10, 2011- We went to CHCDP's Eggstravaganza event at Gallaudet. Orion felt grass for the first time. He tolerated laying on the grass but kept his hands and legs up.

April 14, 2011- While laying in his stroller, Orion checked out a yellow dandelion with his hands. This was at Skyler's first flag-football practice. Soon enough, we had to rescue this dandelion from his teeth.

April 20, 2011- (Orion is 9 months old.) Orion was introduced to the lilac bush out at our mailbox. I could smell its heavenly blossoms, I'm sure he did, too. He grasped the blossoms and leaves tightly and pulled it to his mouth. I was thinking to myself I need to check out what plants are toxic and what would be OK to taste. If he could taste one leaf maybe he'll learn through taste why we don't eat leaves... unless he has he soul of a deer?

Sometime during the last week of April... I started handing Orion some sweet potato puffs, right onto his index finger and he closes his thumb down on it and eats it. It took a couple days for him to improve his 'skill', and an one-time hand over hand help from mom, for him to put his fingers in his mouth along with a puff stuck on them, for him to start eating it. (We avoid taking his hands and making him do something. We don't even bother tryin. But using my judgement and his one-time permission, I took the chance of showing him and it paid off.)


May 4, 2011- (Orion is 9 1/2 months old.) He held the baby food container in his hands and checked the outside of it with his tongue. He also discovered and grasped the sweet potato puffs on the highchair tray. He managed to get one puff in his mouth. That lone puff had an 'interesting' journey from tray to mouth... taa-daaaa. Today's the official day Orion 'feeds' himself for the first time! Yay-yay-yay!


video

Sunday, April 10, 2011

Look, Ma, No Training Wheels!

April 7, 2011- Skyler rode his bike for the first time without training wheels! He and I practiced together after he gave me permission to take the training wheels off his bike on Wednesday (April 6). He and Thomas did practice months and months ago when he was much more reluctant to take the training wheels off. On Thursday, as soon as he was dropped off by a carpooling friend from Kendall's After School Program, Skyler took his bike out and was going to ride it without anyone holding onto the seat. He was just going to ride it without us knowing! So after trying to get a good start and momentum going, Skyler was off pedaling his bike... without training wheels! I was hollering, "Oh my gosh, he's riding!" Tasia was excited. I told her to go in the house and get Dad. He came out and was surprised when Skyler took off pedaling. Skyler did take a few ceremonial crashes/tumbles. What an exciting afternoon, we all had smiles on our faces and Skyler was the most thrilled of us all.

video