Rare Disease Day 2012

AMAZING! Moving. Humbling. Unforgettable.

Today was a day that I will hold in my heart forever.

Bertrand could tell he was being spoiled. :)

Rare Disease Day was embraced by everyone at Ensign Elementary, Bertrand's school! Participation was optional, but you would've never known that based from the outpouring of support.

Bertrand got extra love from Miss Heather.

• The hallways were flooded with kids wearing JEANS for GENES.
• Over 400 denim ribbons courtesy of the RARE Project were distributed by 9am.
• At noon the student body held up their right hands in recognition of rare disease.
• Optional donations were collected for the genome sequencing facility at the Univ. of Utah.
• A TV news station (KSL5) filmed and newspaper reporter interviewed us.
• Crafts were made for rare disease patients being seen at the medical genetics department.

And the most awesome of all: a giant denim chain of links, made by each Ensign student inscribed with messages of love and hope for Bertrand, was presented to him by the principal and the student body. (Yes, I bawled on my way to the car.) It is the most perfect and wonderful craft ever!

There are about 350 links. Every message is different, but some include: "I love you!", "I will pray for you every night", "My grandpa has a rare disease", "We can play together", and "Smile!" I think I will read a few links everyday, or maybe save them for when times get tough.

Victoria also spread rare disease awareness.

We are so fortunate to live in a community that values our beautiful boy for the wonderful person he is and committed to make the world a better place for others!

We love you, Ensign Elementary!

Go Eagles!

EEG/CCTV

Bertrand completed his EEG/CCTV this weekend. He was discharged early thanks to a good recording of his nightly seizure.

His seizure at 11:30pm was about 30 minutes long and rescue medication (versed) was administered by the hospital staff.

Typically, he has between 1 and 3 of these seizures per night, but thanks to the versed that was the only one that night.

Fortunately, we were able to confirm that these seizures are NOT apneic! Phew!


The discharge orders (which looked like boilerplate) say to administer diastat rectally for seizures longer than 10 minutes, but he's been having these seizures nightly for 9 months! We would be giving him diastat nightly!

Before proceeding with this course, we're waiting for confirmation from his neurologists that this is how we should proceed.

We probably won't hear back for another 1-3 weeks on the results of the full EEG.

Video for World Rare Disease Day

World Rare Disease is coming on February 29, 2012!

Pilgrimage to Georgia Tech

First Day of the Abilities Expo

Bertrand met the designer of his wheelchair, Wayne Hanson!

He also enjoyed checking-out all the cool devices. Some we enjoyed seeing included a bike & stair climber below.

Atlanta, here we come!

Workin' the switch like a boss.
Bertrand, Victoria, Nana (Diane) and I are heading down south tomorrow for the Abilities Expo in Atlanta! We're looking forward to seeing family, maybe some friends, and good ol' Ma Tech! ;)

Valentine's Day 2012

Art exhibit benefiting Now I Can!

Listen, watch, and I dare you not to cry.
Bertrand attended the opening for artist/photographer Michael Ririe's SCERA exhibit for Now I Can. It was fantastic! The exhibit is a moving one so, if you're near Provo, make a point to see it! For those of you unable see it in person, Now I Can will send you a gorgeous, hardbound copy of the book for a $29.99 donation.

Bertrand Attends Now I Can Photo Exhibit

Bertrand was lucky to attend the exhibit with his Nana & Papa!Below is Nana's report. :)
All children are a sacred trust. The NOW I CAN foundation, under the leadership of Tracey Christensen and photographer Michael Ririe, have taken these words to heart and turned them into action for children with special needs like Bertrand. As Tracey noted, “These are individuals who spend grueling days stretching, weight bearing, and exercising just to learn to sit, stand, or walk – things we’ve taken for granted our entire lives.”

Michael and Tracey connected in early 2011. Michael’s goal was to create a photographic documentary exhibition and book that would spread the word on the NOW I CAN Intensive Model of Therapy program and enable the Foundation to impact more lives like Bertrand’s. As with all of us who have become connected with the NOW I CAN family, Michael’s project quickly became a life changing experience. As Michael noted, “ My initial approach was to stand back and quietly observe while these patients received their therapy. They didn’t let me simply observe for long as they engaged me and were interested in what I was doing. Soon I was on the therapy mat involved in exercise and photographing on a personal level. I watched as my amazing friends struggled, recognized progress, smiled, fell, laughed, and cried. I felt connected and I felt alive.”

Along with other generous donors, Bertrand’s family made it possible for Michael to publish 500 copies of a NOW I CAN book. The book is an amazing photographic documentary of heroes like Bertrand with Bertrand’s beautiful photo on the opening page of the book. Touching stories from the families intersperse the photos.

To celebrate Michael’s extraordinary accomplishment, Bertrand and his family were invited to an intimate dinner with Michael before the opening reception of the exhibition at the SCERA Center for the ARTS in Orem, Utah. Nana and Papa Might were privileged to make the journey with Bertrand for this special evening.

To our delight Bertrand displayed some of his skills that he has developed since NOW I CAN therapy sessions. He held his grasp on a spoon with his left hand and got his yogurt into his mouth with assistance. To those outside the special needs community this might not seem like a big deal, but for Bertrand using his left hand has been particularly challenging. Every baby step, no matter how small or large, toward reaching his potential is a delight to watch. Even more heartwarming is to see his beautiful smile when he knows he has accomplished a task.

By the time Bertrand arrived at the NOW I CAN exhibition it was filled with people. Michael chose the SCERA Center for the Arts because approximately 20,000 to 30,000 people pass through each month. Bertrand signed in and then went to look at his photos on the wall and admire the artwork that he and other NOW I CAN children had created for the exhibition. He also met up with Sergio, his amazing NOW I CAN therapist. It was a lovely ending to a special evening.

For the grandparents (more Victoria videos)

Therapists in Sync

Miss V, little V, Miss A, Bertrand & Sergio discuss the NeuroSuit.
Yesterday, Bertrand had a 4 hour therapy session at Now I Can. He did fabulously! (And for the record, I am not going crazy. His scoliosis IS improving.) Bertrand brought his therapist entourage: Miss A and Miss V. We were all so happy that they came! They really benefited from seeing Sergio work with Bertrand and being able to ask questions. While they've clearly been doing fantastic things with B, they'll be doing some things differently next week for sure!

Bertrand's honorary mini-therapist, sister Victoria, listens intently.

Happy Week at School

These photos were sent home by Bertrand's teacher. He had such a happy and adventuresome week!

Scoliosis Reversing?

Recently, as confirmed by the orthopedist last week, Bertrand's back hasn't been looking bad. In fact, could it be looking better?

Look at the photo above of Bertrand playing today. You can see how straight he is sitting. I just barely see the curve. Are my eyes not seeing right? Am I going crazy? (Well, crazier?)

I am very curious to hear what the folks at Now I Can say about his back & hips tomorrow. Bertrand has taken his homework very seriously! And, I'm so excited for Miss A & Miss V to meet our beloved Sergio, Natalie, and gang! :)

Moisture Chamber Goggles

Bertrand will model these bad boys tomorrow. Won't he look cool? :)
Bertrand's new ophthalmologist recommended moisture chamber goggles to help with his dry eyes. Moisture chamber goggles tend not to come in pediatric sizes and the ones that do run upward of $100. This is too much money for something that might not work for Bertrand. (The Tranquileyes were a dismal failure, by the way.) So, we decided to make some moisture chamber goggles at home.

We wanted the goggles to be comfortable. Swim goggles formed a good seal but would leave marks & didn't look comfortable. Snow goggles had comfortable padding but air vents. The vents are there to prevent fogging (moisture build-up), but for Bertrand that is what we want! So, we bought kid's snow goggles & cut black electrical tape to block the air vents. If the goggles work well, we'll buy a few extra pairs in the after ski season sales to modify as well.

Open vents.

Taped vents. Classy.