We took the kids to Salt Lake ComicCon yesterday, and we all had a lot of fun.
Victoria met a wookie:
She also made a "Fairy Bat Princess" costume:
We all got to play on the bridge:
March 20, 2014
March 5, 2014
March 4, 2014
February 20, 2014
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. :)
February 4, 2014
|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, 2014Senator Jim Debakis54 B StreetSalt Lake City, UT 84103Dear 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