September 29, 2013

Pumpkin Patch 2013

This year, somehow a Doggie and Skeleton got into the pumpkin patch!

Bertrand, king of the pumpkins.

In order to pick the perfect pumpkin, you must touch every single one.

Strong, big brother holds his pumpkin and little sister's pumpkin!

Victoria helps Nana pick a pumpkin.

Victoria enlists more pumpkin holding help.

Heading to the barn to catch a hay ride!

Uncle Steve, Baby (Cousin) Gabby, and Nana catch up on the ride.

Titi Saby snuggles a Doggie on the wagon.

Mama and Daddy cuddle the cutest skeleton boy.

The Corn Maze survivors.

Back at the house: Gabby ScarecrowBertrand and Victoria Scarecrow

September 28, 2013

2013 Wasatch Reptile Expo

Titi Aury and I took the kids to the Wasatch Reptile Expo today, courtesy of Hope Kids.

Honestly, I didn't know what to expect, but figured that since Aury loves reptiles, we should go.  Victoria was a bit overwhelmed by everything, but Bertrand LOVED it!  He got to touch snakes, tortoises, and an alligator.  You can see how much he enjoyed holding a 17 lb. python below.  :)

The expo was not limited to reptiles.  There were amphibians such as tree frogs, "exotics" such as hedgehogs and ferrets, plus a dazzling array of bugs--many as big as my hand.

Aury is already planning on attending the expo next year.  Her eye is set on a pet corn snake.

Victoria's favorite animals were the tree frogs.

Bertrand's favorite animals were the snakes!  Who knew?!
My favorite?  The terrariums. ;)

The expo was much larger than we anticipated--two floors packed full of exotic animals.

September 25, 2013

Accessible Home: Planning

Recently, we have been gearing up for some home improvement projects.  While being surprisingly handicap accessible for a 100 year-old home, our old gal needs a little bit of tweaking to be ideal for Buddy B.  The two top projects are: (1) Bertrand's first floor bathroom and (2) wheelchair ramps.

Bertrand has been using the potty at school every single day for over 3 weeks!  This magnificent milestone has accelerated our need to remodel his first floor bathroom.  And, the wheelchair ramps are simply overdue.

Now I will admit, accessible design is becoming a bit of a soapbox topic for me.  Why does so much of it have to be so ugly? So institutional?!  People with disabilities are just like any other human being--they can appreciate beauty.  In fact, I'd say Bertrand deserves it.

For over a year now, I have been researching, examining, asking nosy questions, and thinking about accessible design non-stop.  My conclusion is that beautiful accessible design is possible! BUT it takes more planning and thought than is typically given to these sorts of things.

For the bathroom, I don't believe that attractive accessible design will necessarily cost anymore than typical bathroom design.  However, I am finding that attractive, durable, well-integrated wheelchair ramps may cost a pretty penny--especially with the weather conditions we have in Utah.  So, out of necessity, the ramps will be coupled with a landscape overhaul.

While we are still in the planning stage, I ask you, my knowledgable and wonderful blog readers: what are your thoughts on accessible design?  Are there any resources you'd recommend?  Thank you.  :)

PS - For the curious, here are my pinterest boards for the bathroom and the landscape/ramps.

September 21, 2013

Bertrand uses a spoon

New milestone: Bertrand uses a utensil!

While working with his occupational therapist, Miss V, Bertrand took about 20 spoonfuls of yogurt.

As you can see in the video, he held and guided the spoon under his own power!

It wasn't long ago when something like this seemed completely impossible.

We are proud of Bertrand for all the progress he has made in the past couple months!

September 19, 2013

Dr. Freeze* wins Golden Goose Award!

A guy named Freeze works in hot springs…but the story is much better than that!

Most people go to Yellowstone National Park to explore the outdoors and admire nature. But in 1966 two scientists named Freeze and Brock went on different mission, not knowing that their journey would transform human medicine. Now, 47 years later, they receive the prestigious Golden Goose Award.
In 1966 Thomas Brock, Ph.D., of Indiana University, and his then-undergraduate research assistant Hudson Freeze, Ph.D., visited Yellowstone National Park because they were curious to find out how organisms survived in extreme conditions such as the park’s famed hot springs and geysers. The enzymes produced by one of the bacteria they collected to study – which they named Thermus aquaticus – enabled scientists to employ the high heat necessary for the replication and study of its DNA. Once they were able to study and use DNA in this manner, scientists essentially created the field of biotechnology, which then made possible the genomics revolution. These developments have led to extraordinary medical advances in recent decades and promise many more.
On September 19 at an event in Washington, D.C., the two will receive a Golden Goose Award for this work. The Golden Goose Award is a new award that highlights the often unexpected or serendipitous nature of basic scientific research by honoring federally funded researchers whose work may once have been viewed as unusual, odd, or obscure but which has produced important discoveries that have benefitted society in significant ways. The Golden Goose Award alludes to the fable of the goose that laid golden eggs. Its sponsors view America’s federally funded research enterprise as an extremely valuable goose whose golden eggs are the innovations and discoveries born from basic research that transform lives and fuel the economy.
The Brock and Freeze discovery has led to the ability to amplify copies of DNA through a method called polymerase chain reaction (PCR). PCR is now used to perform accurate genetic tests for a variety of diseases, to perform forensic science tests that analyze crime scene evidence, and catalyzed the efforts to sequence the human genome. Today, Hudson Freeze is a professor and director of the Genetic Disease Program of the Sanford Children’s Health Research Center at Sanford-Burnham Medical Research Institute.
Who would have thought that all this started by two guys with a federal grant and a trip to the hot springs in Yellowstone National Park!
* Dr. Hudson Freeze is the top glycobiologist being funded by the Bertrand Might Research Fund to better understand and find treatments for N-glycanase deficiency.  Great job, Hud!

September 11, 2013

Kindergarten Schedule

Bertrand has been doing amazingly well on his new full-day kindergarten schedule.  He is so happy!  Bertrand is in a "Life Skills" classroom so, while they cover some standard academic concepts like math and reading, there is a greater emphasis on "life skills" such as toileting, communication, gross and fine motor activities, etc.

Most days Bertrand does 7 hours of school, 3 hours of intensive physical therapy, and 1 hour of stander at home.  Since several people have asked, here is a overview of Bertrand's weekday schedule:

Monday through Thursday:
6:45 AM - Wake up, eye drops, breakfast, medications
7:00 AM - Wash face, scrub eye lids, brush teeth, eye ointment, clothes
7:30 AM - Bus pick-up
8:00 AM - Arrive at school
8:15 AM - Greeting, toileting, positioning
9:00 AM - Physical therapy, gross motor activities, eye drops
10:15 AM - Recess with student helpers
10:30 AM - Group activity*
11:00 AM - Lunch, clean-up, toileting, eye ointment
1:00 PM - Communication, cognition, fine motor activities, eye drops
1:50 PM - Recess with student helpers
2:00 PM - Additional programming*, toileting
(* These activities are frequently "mainstream" with the regular kindergarten class.)
3:00 PM - Notes, coats, salutations, eye drops
3:15 PM - Bus departs school
3:30 PM - Bus arrives, intensive physical therapy
3:45 PM - "sNAC" (applesauce with N-acetylcysteine)
5:00 PM - Toileting, eye ointment
6:30 PM - Dinner, medications, stander
7:30 PM - Remove from stander
8:00 PM - Bed, eye ointment, overnight diaper, bedtime story

Not long ago we would have thought that a schedule such as this would be too strenuous or tiring for Bertrand.  We are proud that our little fighter has proved us wrong.  Not only is he tolerating this schedule, he is *enjoying* it.  He is thriving!

On Fridays, after Bertrand finishes school at 1pm, he will play with Victoria, go for a walk with Mama, or nap for 2 hours, and then have a typical physical therapy session from 3:30 to 6:30, followed by an hour of stander time.  On the weekends, Bertrand has a couple 2 hour sessions of occupational therapy and a single 3 hour session of physical therapy--this is on top of spending time with family, friends, and going to fun activities with his best friend Victoria.  He is our busy B.  :)

September 10, 2013

Salt Lake Comic Con 2013

On September 7th we took the kids to Salt Lake's first ever Comic Con.  We dressed for the occasion, thereby establishing the kids' nerd cred early (as if there would ever be any doubt).  Victoria reprised her role as Princess Leia. Bertrand started off as Mr. Spock but, after Victoria stole/lost one of his ears, he ended up as an ensign from the USS Enterprise.  Matt represented for Battlestar Galactica, Aury for the Whovians, and Cristina for mama honeybadgers everywhere. Bertrand probably enjoyed himself the most out of everyone!  With 80,000 people attending on Saturday, the rest of us suffered from a bit of sensory overload.  We made it just over 2 hours before returning home and EVERYONE taking naps.  All in all, a great day, and we're already looking forward to next year.  :)

September 8, 2013

Sitting Proof

We have been trying to catch Bertrand's new sitting skill on video for weeks now.  Each time we pull out the camera, he stops.  Every time we put the camera away, he sits.  His therapist Miss C finally caught it on video for us--as Bertrand was complaining about the slow service on his dinner. It's amazing that he can even sit up when angry at the waitstaff (read: me)!

September 5, 2013

Mr. Kindergarten

Kindergarten clearly agrees with Bertrand.

For 2 weeks, Bertrand has been pushing himself up to sitting position unaided at least once a day.

Over that same period of time, he has also been eating a big school lunch!  He is consuming a variety of foods and textures that he would balk at with us at home.  

And now today's note from school says that Bertrand urinated on the potty for the first time ever!  Yay!

Kindergarten is proving to be a great year for our little man.  :)

"He urinated on the potty chair.  :) "

September 1, 2013

The Return of the Nana

Bertrand and Victoria are overjoyed to have their Nana back!