Purple Day 2013

Another year, another Purple Day. Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.  The Bertranator wore his purple today.  How about you?  :)

"I'll be back... after school."

WSJ: Gene Therapy Spurs Hope

Gene Therapy Spurs Leukemia Hope

The Wall Street Journal

By RON WINSLOW

Researchers are reporting a new strategy in the cancer fight that eradicated the disease for five patients with lethal cases of leukemia. Ron Winslow has details on The News Hub.

Researchers reported fresh evidence Wednesday that using gene therapy to manipulate the immune system is emerging as a promising new strategy in the fight against cancer.

Five patients with a lethal leukemia achieved complete and rapid remissions after the treatment, in which cells from their own immune systems were genetically altered to specifically attack the disease.

While the study was small, researchers were impressed that the cancer was eradicated in all five patients. In one patient, all evidence of the cancer was gone eight days after treatment.

Click HERE to read more.

First Contact!

We break the 2 month blogging drought to bring you an internet happy dance:

We had our first contact with another NGLY1 family!

On the first day of spring, we couldn't have asked for a better sign of new life or hope.  :)

While we have our reasons, as an apology for not blogging, here are some photos from the phone.  

Bertrand's new haircut elicited lots of thumbs-ups and fist bumps from guys!  

...and death threats directed at the clipper wielder from the women in his life.  

Needless to say, we may be watching our backs for his next hair cut.  ;)

We call him the Buddy Lama.  :)

He is our teacher.  He exudes peace and enlightenment.  

Standing, holding his own bottle, AND being ridiculously good looking all at the same time!

This pose is more of a Sergeant Buddy.  

You can actually believe he weighs 51 lbs in this picture.

Bertrand T. Might, the Most Interesting Man in the World.

We're already not cool enough to be seen in public with her.

Victoria, l'artiste.

Making her mother proud.  :)

The essence of Victoria.

10 Days at Camp Nana & Papa

Bertrand and Victoria spent 10 days at Camp Nana & Papa. Despite a bout of the flu they still had a blast. Here are some of the great photos we got while away. We missed the kids so much! Can't wait to hug them in a few short hours. :)

Autism Family Night

This is a free event for families dealing with autism on January 28th at Discovery Gateway. It will be a fun way to connect with other families and researchers in the Utah autism community.

Also, if your child has autism and/or developmental delays but is undiagnosed, the kind folks at Lineagen (like my amazing friend Karen!) will be there to answer your questions.  :)

ASSIST Community Design Center

Video streaming by Ustream
Bertrand is nearing 50lbs.  It's a growing challenge getting him in and out of the house, up and down stairs, and using the bathroom.  Safety is a huge issue.  I fell down the stairs carrying him when I was 6 months pregnant with Victoria, and Bertrand was just 40lbs then.  I am forever grateful that only I got hurt that time.

So, I was excited to get in contact with the folks over at ASSIST today. ASSIST Inc is a nonprofit Community Design Center founded in 1969. ASSIST provides architectural design, community planning and development assistance to nonprofit and community groups, and housing and accessibility design assistance to low income households or persons with disabilities.

We have an appointment in three weeks (on February 1st) for property inspection and measurement.  Then in approximately 2-3 weeks, an ASSIST representative will be back with architectural plans and cost estimates, so we can start saving and budgeting for the remodel.  They also have a list of contractors we can contact for any project we choose to undertake.

We're looking to improve the accessibility to the back of our home (think: ramps) and remodel our first floor bathroom so Bertrand can use it.  (It would be nice to give him a shower or bath and not almost break my back or knees in the process.)  Those new kitchen counters will just have to wait.



The first floor playroom is morphing into his big boy bedroom.

The last few months, my heart has been heavy with the dawning realization that Bertrand's bedroom would have to be moved downstairs.  It's silly, but decorating Bertrand's first bedroom was symbolic for me.  At the time he had a projected 18 more months to live, but by setting up his room I was signaling to everyone, especially myself, that he was here to stay.

It was a monument to my love for him, and to the boyhood I believe he deserves.

And a wholehearted acceptance of the vulnerability that by nature is required to love him.

I am sad that he'll no longer be in his beautiful room.  And I am sad that (despite video baby monitors) he will be on a different floor from the rest of the family at night.  I don't want him to ever feel different or less loved.  It hurts me that this is his reality.

But, I know Bertrand will be fine.  We'll find a way to make his new room wonderful.  And Victoria can sleep over as often as she wants--same goes for Penny, his best furry friend.  (And his Mama too.)  And I know he'll enjoy less-achey parents.  He'll be happy.  He always is.

*Sigh*  I guess even hearts can have growing pains.

First Movie: The Hobbit

Bertrand attended his first ever movie at a theater courtesy of Hope Kids. 

It was Peter Jackson's "The Hobbit".

The showing was early in the morning before the theater opened and for HopeKids families only. The audience was full of sympathetic souls who would understand if Bertrand got over-stimulated or vocal. 

Still, we were fully prepared to carry him out of the theater if necessary.

But we shouldn't have worried. Bertrand was amazing! He genuinely enjoy the movie. Moreover, he was well-behaved and attentive for the entire three-hour film!  We were shocked and oh so proud.  

I see more movies in his future. :)