February 2012
WOW…just when I thought I’d given myself a breather and pretty much caught up on postings for a while, time flew by and it’s already the end of February…making me way over due on updating Trey’s blog.
This coming Thursday will be 20 weeks …5 months already that we have been flying back and forth to Oakland on a weekly basis…time sure has flown!
The good news is Trey has had no adverse reactions and is doing better than I thought with keeping on top of his school work and his spelling tests every Friday. The bad news is, we know for sure these weekly trips will continue past the original 6 months we were told and most likely even longer than a year. The whole study will last for a total of 240weeks (4 ½ years). Who knows when the sponsors will find the time to set up an infusion site here in Arizona…only time will tell.
Week 12 of the study consisted of two two-day trips to Oakland, as well as lots of tests and blood draws. The kids were still on Christmas break so as a treat to them, all five of us traveled North to support Trey. So much went on those two weeks and every week that followed (all good) that I thought instead of giving a week by week dissertation, I’d just add little captions to some of the pictures I've taken along the way.
"See ya" my 'good walker'-as Trey called himself. Once again I had to bribe Trey to get him to cooperate in the walk test and the stair climb…of course it worked and Trey was my little All Star!
Goofing around adding Brocs hair and mine to Trey for some pretty funny pictures!
For those of you who don’t remember, Drake becomes very queasy at the sight of blood. Trey on the other hand is a “vampire” and insisted on teasing his big brother with his all his vials.
As part of another bribe, I brought Trey some Bears tat’s…he was so proud to show them off to the girls.
As a special treat we had the honor of meeting another MPS patient /family that was in town enrolling in the study…introducing “Miss Isabell”. Yes, she insisted I call her Miss Isabell-how cute is she?!
So now that Trey is an ol’ pro at every step of his weekly routine, he thinks he can do it all himself and even mommy…taking my blood pressure like a big shot!
Did I tell you we bribe Trey a lot to get him to perform for this study? Well for whatever reason, last weeks’ accomplishments got him an official Chicago Bears uniform. Hello, “Mr. Tough Guy”!
Another adorable picture of the future Mr. and Mrs. Lane enjoying a Jamba juice together at the airport before parting ways…until next week!
I will never know if Trey is actually receiving the enzyme or is a part of the placebo group for this study but after seeing how strong he’s becoming and how soft his hair is getting, I’m beginning to wonder (although I’d never admit it to the doctors). Check out Trey doing the strength training that Broc puts him thru on a weekly basis…you little stud you!
Traveling with Justin and Kianna has been a treat for Trey (not to mention Kianna has a I-Pad).
Mr. Personality as the Oakland airport concierge…he is such a ham!
Hamming it up again…Trey asked the flight attendant if he could wear his seat belt like this for take off-haha!
The kids made the most of a cancelled flight. Justin gave Trey a ride around Burbank airport as we waited two hours for the next flight home.
So for today we say “Seize the Day” and be thankful on so many levels;
That a treatment is here,
That Trey is able to be a part of the study,
That there is so much worse than weekly travels,
That no matter what group Trey was a part of in the first six months, four weeks from now, he will positively be receiving the enzyme that his little body requires so critically.
And that unlike last time when Trey received an enzyme replacement therapy for the incorrect diagnosis and three quarters of a million dollars was taken from his insurance benefits, this time the study sponsor is paying for all tests and procedures relating to the study.
Up, Up and Away my little Frequent Flyer!
