Little Milestones, Just As Sweet

Mom and Orion hangs out in the TV room after his haircut

January was a month of progress for Orion after struggling with a very bad ear infection that got him admitted at Children's hospital and those annoying rashes.  It was as if he just took off once he recuperated from everything.

Around January 5th, Orion put an arm through a shirt sleeve by himself.  I first tapped his right hand, no response, so I helped him get started putting his hand through the sleeve.  Then I tapped his left hand and he put his hand through the sleeve by himself.

January 18, 2012: I attended a workshop, "Outcomes, Intervention Strategies and Teaching Caregivers", presented by Kat Stremel Thomas at The College of New Jersey, Ewing, NJ, near Trenton.  It was so nice to get out by myself.  Enjoyed driving and detouring/exploring like I could do freely when I was a Gallaudet recruiter "many years ago".  Kat is researching deafblind children considering or have received cochlear implants.

January 25, 2012: I introduced a toothbrush to Orion.  We both "brushed" his teeth.  When I had enough, I let him hold the brush.  He continued to slowly brush his front teeth with that distinct motion.  

He stood/leaned on the couch during physical therapy at PIP for 1 minute 30 seconds! The exclamation mark is there because last time he stood it was for 14 seconds.

Skyler spent a lot of time and several sheets of paper checking out the Brailler loaned to us from Prince George's County.

Orion loves to explore holes he can get his fingers in.  This wiffle ball was often checked out.

January 27, 2012: I finished Orion's new play apron.  I would have never thought of this on my own. :) It was forwarded to me from our DB specialist here in Maryland (CBSS) as well as a mom of another very cute blind boy (Thomas Marshall). There are many other ideas at the following link especially for blind children with some usable vision: www.ohiodeafblind.org/assets/files/images/products/holdon.pdf

February 1, 2012: Orion's Prince George's County Infants and Toddlers Program team came and visited him at Kendall's Parent-Infant Program class.  One of Orion's teachers from Kendall PIP visited during a home visit by Prince George's County ITP back in December 2011.  It was a wonderful experience to see everyone connecting, discussing and observing all because they care about Orion.  I was pleased.  Lucky little guy!

February 4, 2012: Gma D's birthday. (Dorothea Nordstrand.) She would have been 96 today. My mom, uncles and family were at History House in Seattle to launch Gma's book of Green Lake girlhood memoirs, "Pork Neckbones, Sauerkraut & Rutabagas".  Gma would have been very proud of her family.


Orion finished off an entire NUK sippy cup of milk.  It's still very much like a bottle with its soft top. We're trying to transition him to sippy cups.  

Orion stood upright for a few seconds as I held him centered, all weight on his feet.  It happened just that one time. All the other times, he stood up/bowed over looking like a toddler Gamma (Γ).  

Orion has no problems putting his arms through shirtsleeves by himself, prompted or not.

Before snip-snipping during his slumber.

February 5, 2012 (Superbowl): Snip-snip went Orion's snowy hair as he was sleeping. He had long white hair on the top of his head that seem to sway like sea anemones when he's moved around.  I saved clippings.  His hair is so beautiful.  Looks more like a toddler boy than a baby now. 

Orion, the next day after his haircut; Skyler is checking out the deer in our backyard.

Musing

I continue to appreciate the little accomplishments.  Yes, Orion is not as speedy in progress as our "typical kids" but each accomplishment is met with a "Yesss!" and/or a quarterback fist pump.  This is Orion's pace: Little and Often!  Seek the good in all situations if you can.  For example, if your little emerging reader gets in trouble for writing a sentence with an obscene word; even though I'd frown at the word selection, I'd still ask, "Was the grammar correct?"

The Horrible, Good-For-Nothing Ear Infection

Katra with her new kitty toys from her human grandparents.

By early January, Orion was at the end of a long stretch of uncomfortable issues.  The last of the annoying issues was nasty, burning diarrhea and we slathered on a lot of trusty Desitin hoping it would work wonders for his red parts.   

The Smelly Ear Infection
Looking back, it all started before Thanksgiving.  He had a smelly right ear but was behaving fine and was prescribed antibiotics.  The smell went down and did not disappear completely.  Well into December, the stench came back even stronger the second time around. I did the usual take-baby-to-doctor-and-get-medicine routine. 

The weekend before Christmas, Orion screamed when we put on his activated CI processor/coil.  We gave Orion and the equipment a time-out until he went to the ENT for follow-up Tuesday after the weekend. 

After showing up at the ENT and demonstrating the reek emanating out of his right ear and his attached-CI processor-yelling, I brought him to Children's ER.  That was on December 20th.  They admitted him, with IV antibiotics and eventually Orion had a tube put in his right ear.  By doing this they were being proactive to protect his ear and his implant. Everything went well and with a clean-smelling ear, he was discharged the next day on December 23rd late in the afternoon.  (We were so worried he'd stay through Christmas!)

Skyler and Anastasia track Santa's Christmas Eve progress via NORAD's website.

The Battle Over The Medicine
For his ear, he had to take 9cc's of bactrim orally two times a day.  It was a struggle!  He now dislikes applesauce and karo syrup because I tried and failed to conceal the taste of the medicine.  He would open his mouth for other foods but became tight-lipped when he knew it was applesauce.  The advice nurse gave me useless advice, to try to reason with him that he had to take the medicine.  I was left with trying to force the syringe in his mouth and squirting some in.  I took him to urgent care on Christmas Eve and Christmas Day asking for any other way.  I even asked for a special IV line where it can be left in and I can bring him to the doctors for a dose. I tried new strategies to get 18 cc's in Orion in a 24 hour period (karo syrup, or 6cc's every 8 hours, or 3cc's every 4, etc.)  By the time I think Orion's getting used to it, after around 10 days on bactrim late on New Year's Eve, he developed bright red cheeks. 

Orion's New Year's Eve festivities included sleeping.

The Rash
Oh, great!  No fever. Then on New Year's Day, dotted rash showed up on his chest in the morning.  By night it was all over his body. I took our little frequent flyer to urgent care again on January 2nd.  It was either post-viral rash or allergic reaction to the sulfa in the medicine he had to take so the doctor told us not to continue the medicine.  Orion happened to shriek and make his usual cute little noises... Yes, Orion, now's a good time to celebrate, you don't have to deal with the antibiotic anymore!
 
Is his implant OK?
On January 3rd, we saw his CI surgeon at Johns Hopkins and eventually the audiologist to tweak his processor volume to the point where he can wear it without crying.  He had to get used to it all over again, the wearing of a contraption on his head. 

It looks like the crying during the first week of January was because he hadn't worn it continuously since around December 17th when his screaming started even though he'd been wearing it regularly at that time.  I'm guessing his ear infection was so bad his ear hurt.  

That's All Folks!
It turns out the last of his issues was a yeast rash.  Nystatin was prescribed and his bottom improved quickly.  Bactrim can cause overgrowth of some bacteria... thus the yeast issue.

We don't know if the infection was caused by his CI's presence.  He did have a brief cold right before his infection was obvious. 

Orion has to wear a swimming ear plug in the bath because of the tube in his right ear.  His ears smell just fine. Thank goodness!

Orion's Physical Activities

Orion has made huge progress physically.  He is sitting up with less and less support.  When he is not trying to lay down in his favorite position, he accepts people holding him at his hips for sitting on the floor. And only last night, I took my hands away from his hips and he stay seated for 1, maybe 2 seconds before toppling over sideways!

I learned that children like Orion feel more secure with their body in contact with something.  There is contact from head to feet while laying on the floor.  When sitting, there is less contact, with his bottom, legs, feet and maybe hands if he's propping himself up with them.

January 3, 2012: Orion sitting up in the pseudoBumbo (5 minutes) Falkor is glaring at Katra outside the frame. 

January 14, 2012: Orion's having so much fun with a-buck-something shower curtain rings. I bought them for a different project for Orion and here he has other plans. Love it!

After 2 weeks of sitting sessions in this seat (company: Summer's Infant), Orion has accomplished 20 minutes of sitting. We are seeing an increase in Orion lifting his arms sideways when he's had enough sitting in the seat or highchair. We saw it clearly during a Prince George's County Infants and Toddlers home visit on January 12th. Up to this point and we still continue to sign "FINISH" and/or lift his upper arms right before we pick him up.  We particularly did the latter to teach him the gesture for "pick me up", or "done", since this is usually learned visually.

January 18, 2012: A different look at Orion: standing at couch for 14 seconds next to the PT, at PIP, Kendall School. (Photo by PIP teachers.)

Orion's Highchair Adventures: Learning to Eat With a Spoon

 

2m 30secs

Orion's Spoon Experiences
Orion knows the spoon very well as he's been eating off it for almost a year now.  In April 2011, right after Thomas' retina detachment/vitrectomy, Orion's Uncle stuck the spoon in his hand, already near his mouth.  Orion pulled it to his mouth. That was the feeding mode between Orion and Uncle while mine was tapping his cheek and Dad's was a pat on his chest.  I have occasionally put the spoon in his hand, only touching the palm and no holding his wrist or hand with my other hand, he'd either quickly put it in his mouth or withdraw his hand.

Apparently Orion did not realize he can or should do it under his own power until recently.  He's been eating with his hands and other times when it's jarred baby food, it's off the spoon.  After enjoying reviewing  Perkins' webcasts, especially one by Barbara Miles, I realized the practice of teaching/showing him things using hand-under-hand method had faded away from me. So I got proactive late last week and I would say during his 2nd session at the highchair, he picked up the spoon off the tray.  (The spoon has always been pre-loaded with food.) I've always thought he was awesome but he still surprises me from time to time.

Um, maybe Orion was just waiting for Mom to finally show him?

On Sunday night, Skyler wanted to give Orion crackers. I told Skyler to tap the back of Orion's hand and give him the cracker underneath to the palm of his hand.  Orion took over from there and Skyler was thrilled.  Skyler declared he will from now on sit with Orion and feed him.  Skyler loves to get a little rough tickling his little brother or lay down and fall asleep next to him if he's on the soft mat in the TV room.  I'm glad Skyler had this feeding experience to increase his bond with his little brother, a different kind of interaction where Orion has better participation in than being tickled silly. 

The Equipment
We have several fat-handled spoons designed for easier grip for little hands.  The spoon used in the video had a wide bowl but a skinny, flat handle.  Just yesterday, a mommy friend passed on some more toddler utensils to us and one of them had a spiral/ribbed handle.  Orion enjoyed nibbling/feeling it.  The only thing with this ribbed spoon handle is that I can't imagine he'd know what angle the spoon is turned since it's round all the way opposed to a flat handled spoon.  With the latter, as it is comfortably held, the spoon angle is either right-side up or not.  I will watch this and see if it is me over-thinking things.  :)  (We stopped using infant spoons several months ago, switched over to wider infant or toddler spoons without objections from Orion.)

Food
Orion has been open to eating more table food.  For dinner on Monday night, eating with his hands, Orion ate avocado slices! (Much to Skyler's disgust.) He also ate ground beef and yellow rice.  We did offer him avocado and ground beef a long time before and he wasn't interested.  This shows, just like any other kid, some foods need to be reintroduced or for the kid to get accustomed to its taste/smell.  (Tho, my parents probably will tell you it didn't work out for me and any type of tomato!)

What's next?
We'll continue with Orion using his hands to pick up food along with his new-found skill in picking up the spoon and then somehow teach him how to load his spoon using hand-under-hand.  Lori, his occupational therapist at Kendall School, recommended mashed potatoes.  They stay on the spoon well.  Perfect! Orion enjoys the mashed sweet potato I occasionally nuke in the microwave for him.

Fantasy Flight 2011

Orion and family was invited via CBSS to Fantasy Flight 2011.  This was an annual project of Children's Hospice International and United Airlines at Dulles airport.  There was clearly a lot of thought, effort, love and time put in this magical event.

We arrived at Dulles early the morning of December 10. They went all out, Christmas style from picking up boarding passes all the way to the end of the party after arriving at North Pole.  I was so happy to see Christmas spirit, full throttle. We went through security like any other trip, there was face-painting and donuts, fruit and drinks at the boarding gate.  Glittering garlands draped the interior of the plane, signage was covered in wrapping paper, jolly flight attendants were donned in antlers, bells or Santa red.

This flight attendant was having so much fun!

Skyler and Tasia enjoy chocolate covered Peeps.

Orion and his new friend.

We love Mr. Grinch!  He was smiling and then when I(Mom) took this picture, Grinch quickly assumed his role by pouting!

Lovely Mrs. Claus.

We were able to convince Skyler to pose with the gorgeous Redskins cheerleaders.
(He is still a Cowboys/Seahawks fan.  Sorry!)

Holy moley and I thought I had a big head!

There were apparent challenges for the antlered or hat-wearing flight attendants while on putting the inflatable yellow life vest during the pre-flight safety instruction. We then took off into the sky.  Attendants pulled down all the window shades.  My Sky opened his again but luckily the plane was turning left and all he saw was pretty blue sky.  But later he kept opening and shutting it as I covered Tasia's eyes the best I could as she also pried my fingers off.  Orion was busy sawing a sequoia log in Thomas' arms.  The flight was around 30 minutes long.

After landing, we came out of the jetway into North Pole with cheerleaders, Nationals mascots, princesses, elves, families, friends, etc.  There were a lot of things going on... music, food, booths, night vision and infrared goggle demonstrations, people passing around goodies. Santa and Mrs. Claus came in to have pictures.  Orion was nearly all the way through his sequoia log as he was handed over to Mrs. Claus and the Big Claus himself.  Santa had gifts for every kid in attendance. 

Have you seen the pages of a Where's Waldo book?  This is what the jolly festivities reminded me of. Our neighbor said it would happen: we were touched.  Orion finished his log and had some yummy food before we left.  We conceded to the kids that it wasn't really the North Pole.  The real Santa Claus and North Pole was still so far away from us.

To know that there are people out there who give selflessly to enrich the lives of children is touching, comforting and inspiring.  Thank you so much.

Greetings, 2012!

After a couple years of e-mailed photo greetings followed by a stumble or maybe a save last year, depending on perspectives, with a video-recorded holiday song courtesy of Skyler and Tasia that I posted on this blog... I decided to try the good ol' holiday photo card once again. I made it happen!! Hallelujah!! I'm still in shock. (Also, by posting here I will get a discount from Shutterfly on my next order. Try it... well, if you like.)

Also, you've probably heard/seen it enough from fellow humans, but.. best wishes for a joyous 2012!

Photo Card

View the entire collection of cards.

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.