Hygiene and Toileting System

Bertrand was fitted for a new hygiene and toiling system today.  We selected the brand new HTS by Rifton.  He'll be one of the first (if not the first) person in Utah with this model.  It is for toilet and shower use.  It should arrive in a month.  My spine will be very happy when it does.  :)

House Bill 105

Even though it only just got introduced to the House, we hope H.B. 100 will go far.

The recently introduced Utah House Bill 105 would permit the importation and administration of cannabis oil (high CBD, low THC) extract for the treatment of epilepsy in adults and children under medical supervision in Utah.

The text of just one of the letters I wrote in support of this legislation is below.  Please visit Hope for Children with Epilepsy (the organization spearheading the effort to bring this treatment to Utah) for more information on how you can help.

February 4, 2014

Senator Jim Debakis

54 B Street

Salt Lake City, UT 84103

Dear Senator Debakis,

As your constituent (twice over), I am writing on behalf of my family to ask you to support of Rep. Gage Froerer’s House Bill #105 when it reaches the Senate—and I certainly hope it will! 

My 6 year-old son Bertrand “Buddy” Might is one of the potential beneficiaries of this piece of legislation, which would legalize the medical use of high-CDB, low-THC hemp extract.  

Buddy suffers from a rare genetic disorder called N-glycanase deficiency and suffers severe, intractable seizures as a result.  

His genetic condition is one of cellular metabolism so it also affects his liver, leaving heavy scarring (fibrosis).  For most existing seizure medications, liver failure is a side-effect for individuals with healthy livers. 

  My son does NOT have a healthy liver, so we are currently left with the choice between (A) leaving his seizures unmedicated and having his seizures kill him quickly or (B) medicating his seizures and waiting for his liver to kill him.   

No patient (or their parents) should ever have to face this tragic choice, if possible.

We have currently chosen Option B, but House Bill #105 would give us a much more appealing Option C: medicating our son’s seizures without damaging his liver.  (While CBD is metabolized in the liver, it is not as toxic as existing anti-eplieptic drugs.)

It is my sincere hope that you already support this bill and my letter only reinforces your position, but if you do not, please, please, please help pass H.B. 105!

This crucial piece of legislation is the only hope for many children like my son.

Thank you for your time and support!

Sincerely,

Cristina Might

Creepster Crawler

Buddy is quickly tolerating and mastering his brand new Creepster Crawler. :)

Someone is upset that she isn't "lucky" enough to be in the Creepster Crawler. ;)

He was crawling all over the place for a motivating toy. 

Playing together: Beads

Victoria was playing with beads near Bertrand's wheelchair.

Bertrand noticed the beads and reached out to touch them.


Victoria then lifted the beads for Bertrand to grab:



She walked away, but I told her Bertrand still wanted to play, and she came back:



It warms our hearts to see these two play together.

Halloween 2013

We celebrated another wonderful Halloween.  Our trick-or-treat crew was larger than ever.  All of my sisters were in town for our niece Gabrielle's first birthday, as well as part of Uncle Steve's family from Kentucky, and the usual Mighty suspects.

This year, the military men carried the day.  

Bertrand's amazing costume was made by his Uncle Cpt. Boojie.

The cutest puppies ever!

Gabby made a beautiful Snow White for her very first Halloween.

Bertrand loves his Miss K! She was his Halloween date.  ;)

The handsome soldiers.

Victoria dubbed her aunt Belinda, Bébé.  We all love it.

Uncle Steve with his little princess and his mom Vanessa, the proudest Granny.

________________________________________________

Previous Halloween Posts:

2009

2010

2011

2012

Story featuring Bertrand wins multiple awards!

"SAVING BUDDY"

Utah couple races to help son with unique genetic disorder

Dogged SLC parents are hopeful science can help their 4-year-old boy, diagnosed with a unique, deadly health condition.

By Kirsten Stewart | The Salt Lake Tribune
First Published Nov 25 2012

Last Thanksgiving, the Salt Lake Tribune ran a full page cover story on Bertrand.   The story, written by the talented Kirsten Stewart, has since won multiple awards!  Our heartfelt congratulations go out to Kirsten and the rest of her team at the Trib.  It was a wonderful story and the awards are well-deserved.

Utah Press Association 2013 First Place, best feature series
Utah Society of Professional Journalists 2013 Second Place, medical/science reporting
Top of the Rockies 2013 First Place, health reporting

Family Portraits 2013

 
The amazing Staci did it yet again.  We look *almost* sane in these photos.  ;)  
You can't even tell that Victoria was screaming for "baby pumpkin" in half of these (when she wasn't obsessed with rocks) and that Bertrand demanded a snack mid-way through.
This year we added more of our family's Utah crew: the famous Papa and Nana, the "hunkles" Dan and John (aka Boojie), and my sister Aury.
Thanks to everyone for making this 40th anniversary gift for Nana and Papa possible.
Picking just one photo for the holiday card this year won't be easy!
                 Matthew with his two younger brothers, Daniel and John. Victoria mispronounced the word uncle as "hunkle", and you can see why the title stuck!  ;)                    Happy 40th anniversary, Papa and Nana!  We love you!