A Brag-Full Post

In the spirit of the season, this is a thankful brag-full post.  ;)  Bertrand has been on an amazing streak.  Yes, more amazing than usual, if that was even possible.  Our hearts are overflowing with gratitude.  We are also downright proud of our boy.

Bertrand is happier than ever.  He is making new vocalizations, clearly recognizing faces, and playing little games with us.  He is totally into peek-a-boo and tickle monster, even with Victoria.  He is tolerating her and other kids better than ever.  In fact, he showed more interest in baby cousin Gabrielle than Victoria did!

Bertrand is eating solid foods.  In July, after his tonsillectomy, he had an understandable set back, but now he is doing better than ever.  For the past week he has been eating (a finely chopped version) of what we've eaten every night!  And, we've engaged his teachers to work on him with more textures during snack time too.

Bertrand is on the cusp of sitting unaided.  This has been his oldest and first therapy goal, and he is closer than ever to accomplishing it!  We're videotaping every therapy session because we've convinced it will happen by December.  Just wait and see.


Bertrand is weight-bearing.  Today I found him calmly watching Elmo on his iPad--at the edge of his bed standing up!  He'd apparently been falling out of bed, but instead of falling he just stood!!! When I found him like that, just holding on to the bed standing, I was petrified!  I wanted to run for my camera but didn't want him to fall.  So, I just stood there, yelling for Matthew to bring the camera and crying praising B.  By the time a shocked Matt finally arrived (sans camera! grr!) to witness the greatness, B was tiring, so you'll just have to take our word on it.  He was amazing!

We've tweaked many little things over the past few months (supplements, seizure meds, diet, etc.), but hands down none of this would be possible without Bertrand's amazing therapists.  Miss A and Miss V are without a doubt the greatest contributors to Bertrand's recent progress... and our happiness.  So, to Miss A, Miss V, and everyone else helping with and cheering for B:

THANK YOU!

Great Local Businesses

We have some really fantastic neighbors.  As it turns out, we also have some fantastic neighborhood businesses.  We really lucked out!

Today, our local bike shop saved the day--and our upcoming vacation--by fixing Bertrand's sport wheelchair.  Shriners Hospital couldn't do it.  Our medical device company wouldn't do it (we didn't order the chair through them).

The guys at CycleSmith not only did the job well, they did it cheaply, same day, and with a smile.

(A man in a wheelchair came in for some tire stuff too while we were waiting.  Were we the only ones who didn't know about bike mechanic versatility?!  It's definitely worth keeping in mind if you have problems with your kid's wheelchair.)

Oh, and I can't talk about awesome local business without mentioning our pharmacy either.

University Pharmacy was our savior while Bertrand was on the ketogenic diet.

Since it is a compounding pharmacy, the pharmacists were able to source or create carbohydrate-free versions of all his medication.  They also have a great selection of high quality supplements.  And like Cheers, they always know your name.  ;)

But by far, the most memorable customer service experience at University Pharmacy was when we forgot to pick up Bertrand's seizure medication one weekend.  The pharmacy is closed on Sundays, but a pharmacist (the wonderful Trip) came in to open shop just for us and let us pick-up it up.  That day made us customers for life.

There are probably some fantastic, small businesses in your area too, so check them out.  :)  And if you're in the Salt Lake City area, check out University Pharmacy and CycleSmith.  By the way, I hear CycleSmith does bicycles too.  ;)

Thanksgiving 2011

Bertrand stripped down.

Victoria played with her elf cap.

Abuelito loved his granddaughter.

Victoria perfected her crawl.

And discovered her stocking.

Penny guarded the chickens.

And the chickens guarded Penny.

Uncle Steve taught Victoria to play X-Men.

Sabrina taught Victoria to stand.

Rico guarded the food.

Yum!

Mr. Wang sat this one out.

Thank you!

I would like to thank, from the bottom of my heart, everyone who has commented, emailed, phone called, or text messaged their support! Apparently, you all don't think I am completely nuts! I really appreciate it and Bertrand does too. :) You have all bolstered my courage for tomorrow's "thesis proposal"!

Plenty of pictures & video of Bertrand will be coming soon--I promise. But, tonight I am busy preparing the documentation to present to Bertrand's neurologist in the morning while baking for the Cookies for Cole bake sale in the afternoon. We're hoping to scoop-up sales from with the Univ. of Utah football traffic. If you have the urge for something sweet, you should stop by! :)

Speaking of sweet, here is a video of Victoria's first time in a jumper yesterday. She is an old pro at it now. Don't you just want to eat-up those chunky little legs?! She reminds me so much of Bertrand when he was this age--except that he was sitting better, barrel-rolling, and pulling himself to sitting. She has big shoes to fill. ;)

Happy Mother's Day!

Bertrand made this lovely mother's day gift at school!

Happy mother's day to all the wonderful moms out there from all of us!

Bertrand's Thank You Cards

Classic Scarlet 5x7 folded card

Shutterfly custom Valentines Day and Mother's Day cards.

View the entire collection of cards.

I LOVE this picture of Bertrand, and I had a shutterfly certificate expiring at the end of this month, so Bertrand got new thank you note cards! I can't wait to make cards for myself with pictures of both Bertrand and Victoria together. :)

THREE! And counting...

Bertrand celebrated his THIRD BIRTHDAY today!

He had an Elmo cupcake pull-apart for his birthday celebration at school.

The class enjoyed cupcakes and apple juice while the birthday King took an I-am-ignoring-you-all snooze.

Bertrand was happy to come home to find wrapped presents and a yummy lunch.

For dinner, Bertrand got a special birthday treat: carrot cake flavored, low carb, dairy blend. The not-so-special treat was having to listen to his dad, mama and aunt sing "happy birthday". (Bertrand's hearing may never be the same again.)

Bertrand really enjoyed his birthday "cake".

Bertrand received LOTS of presents (in spite of mom's pleas for "no gifts!") thereby continuing his transformation into "most spoiled boy on the planet".

Bertrand attempted to open a present for the first time! This was very emotional for all!

Bertrand was also FLOODED with birthday well-wishes and love from across the world: mail, email, twitter, phone, text message, facebook message, skype, visits, and more!

It has become clear to us that our son is LOVED by more people than we knew.

And that in his short life, he has touched more lives than many people do their entire lives.

He really is special!

Happy birthday, B! We love you!

Happy Thanksgiving!

Happy belated thanksgiving from our family to yours!

We are forever grateful for all of you (online & off) who so selflessly support us!

We love you all! Happy holidays!

You see snow? I see no internet connectivity. ;)

The turkey weighed almost as much as Bertrand!

A toast to our family and friends, near and far!

"Postmortem: The CPK Incident" aka "Stop Your Boycott"

Bertrand says he is now cool with California Pizza Kitchen.

In celebration, his aunt Belinda styled him à la Jersey Shore.

Yesterday when I posted about our incident at California Pizza Kitchen, I didn't expect the response we got. The outpouring of love and support for Bertrand from everyone was amazing! We love you all in return. :) So many people called, emailed, tweeted, facebook-messaged and emailed us or CPK corporate about it.

CPK noticed.

Their corporate office apologized to Bertrand and our family, and they clarified that their no stroller policy doesn't cover such devices used for assistive mobility. Meaning: any assistive mobility device of Bertrand's is allowed. They "completely understand" why we would be upset.

We've accepted their apology and would like for everyone to move on. We never sanctioned a boycott of CPK and hope that those of you taking such action on our behalf will reconsider because their corporate charity (and the most ironic part of this fiasco) is the Starlight Children’s Foundation, an organization dedicated to improving the quality of life for children with chronic and life-threatening illnesses and life-altering injuries.

Also, in the interest of fairness, CPK's unwavering position was that since at one point at the very end of "the incident" we were offered a table outside in the bright sun and heat, we were not refused service. I disagree because I told the hostess that Bertrand was special needs and "he can't sit outside". Anyone who has a child with severe epilepsy--photosensitive at that--knows why Bertrand can't sit outside. We'd be having an ER visit rather than pizza for lunch. But, there you go, let it go on record that CPK says they didn't refuse us service.

******

The conversation with the CPK representative today reinforced that, as I briefly mentioned in yesterday's blog post, if I'd resorted to getting publicly upset and pressing the issue with the manager at the store, of course Bertrand would've been allowed to remain in his stroller and away from seizure triggers.

Now, I am not sure about anyone else, but would being forced to publicly explain to multiple strangers why your child is disabled and dying appeal to you? Could you keep your appetite? Would you feel like sitting and socializing after you've been forced to mentally relive the trauma of continuously struggling and failing to save your child's life?

Needless to say, nobody can "completely understand" our situation, no matter how well meaning. You'd think that after 2 years of struggling with Bertrand's condition I'd be able to "get over it", but I probably never will. Would you?

I feel like, after I've identified Bertrand as a special-needs/disabled child, I should just be able to say that "he can't sit in a highchair" or "he can't sit outside" and non-medical personnel should take me at my word. I shouldn't have to go into depth explaining the 700 plus pages of Bertrand's medical record to perfect stranger to justify anything. No other client is forced to do that, so why should I?

At Vienna Bistro, Bertrand has his own table and the staff loves him. The same goes at Einsteins (where he goes by the title "the cutest baby ever"), Melting Pot and The Metropolitan. I've never had to explain Bertrand's special needs at any of these restaurants, thereby retaining my appetite. Even though there are no hard feelings toward CPK, we'll be sticking to restaurants that don't require a painful explanation in order to be seated.

Thank You!

Bertrand, Matthew and I say, "Thank you!"

We wish we could thank you all individually.

We wish we could say how heartening and touching all of your wishes, prayers, and kind words are.

And we wish we could express how much it all means to us.

Unfortunately, things are still a bit hectic while the excellent medical team over at Primary Children's Medical Center attempts to solve the medical puzzle that is Bertrand Thomas Might. It looks like B will be here for a few more days (more on that later). But for now, we're just grateful that we have the best family and friends anyone could have. So, to all of you who have commented on our blog, tweeted, facebook messaged, texted, emailed, phoned, visited, cooked or sent positive thoughts our way: thanks again and we love you!!!