Thanks Dad!

For those of you who didn't hear, my dad bid on a won the live auction item at Trey's fundraiser. He was the highest bidder of the Phoenix Suns basketball game tonight , to include eight other people in the Swift Transportation suite. Along with my brother, nephew and mt dad's girlfriend, Gloria, my dad also invited our family. Thanks to Robert (as if he hasn't done enough already)as well as Karen, Jim and Jerry of Swift Transportation, not only did we all get to enjoy the game in a suite which was loaded with snacks, desserts, beer, soda and water, these guys also arranged for Trey's name to appear on the Jumbotron,


for the Phoenix Sun's Gorilla to make a special visit to our suite

and goodies bags for the boys

(pictures with a couple cheerleaders was just an added perk).

We all had such a great time tonight, a night we will never forget...thanks so very much, dad! We love you, Mike, Cami, Drake, Broc and Trey.

p.s. another added perk...we were there for a bit of hisotry in the making and got to see Steve Nash (#13) play his 1,000th NBA game.

T-ball (day 1)

Hummm, not to sure what to think of Trey and his t-ball season just yet. Honestly, I don't think we have an fair data to go by...#1 Mike played in our park with Drake, Broc and Trey for two hours before Trey's first t-ball practice #2, Trey missed his nap and #3 Trey is still getting over his sickness. Isn't it "three strikes and your out" in baseball? Well, that's exactly what happened to Trey, he was out, done, over cooked, finished! Trey got through half of his practice then began to cry for mommy (who was busy with team mom duties). Mike tried to settle him down but I'm not kidding when I mean he was "out"...no more for this child, period! Although what we did get to see of him for the first half of practice was so promising.


I hope all the factors going against my little ball player was just a result of a bad day and that when Trey has his next practice and 1st game following the spring break, we will have better news to report. Stay tuned...

Fine By Me

Trey had another dentist appointment yesterday which was nothing short of perfect. Trey has been asking when he was going to get to go to the dentist…go figure. I guess since he has sat through dentist appointments for both Drake and Broc and now a few orthodontist appointment’s for Broc…he wanted his turn for Dr. Welch to look at his “Superman teeth” (as the Dr. put’s it). He sat through x-rays and a teeth cleaning like a pro. The dentist told me that Trey’s teeth are extremely ridged and recommended a sealant over the molars to prevent future cavities and to also help strengthen the teeth. If that’s all…fine by me. Next appointment we’ll be tackling such.

A BIG Scare

These past couple of weeks Trey has had a lingering cough. It was what is known as a “productive cough” but the problem was, Trey was snubbing at the opportunity to rid himself of the flem in his throat or nose by spitting or blowing it out. Sure enough, the productive cough turned into a non-productive cough and with the “tightness” came a fever. His temperature started at 101 in the morning then went to 102 by night. The next morning Trey woke up with a 104.6 temp. Off to the doctors we went and his temp was still 104.9 and held that temperature on into the night. Trey was so feeble and tired he couldn’t even sit up or stay awake for his appointment. Trey barely woke up for the check-up, after which the doctor prescribed an antibiotic to fight the ear infection, the fever and the onset of crackling she heard in Trey’s right lung…yes, I was scared. I asked how long I had before we should come back if the fever didn’t break and was told that after 3 doses of the antibiotic Trey should be fine but that if it didn’t work we could be looking at a secondary infection that could lead to pneumonia. Thank Goodness she didn’t say three days because my poor baby was so hot and weak. Plus, I didn’t know if I could take the worrying day and night for another three days. She was right…three doses later and Trey’s fever was gone, the appetite was back and he kept his head up to beat his mommy in a few games of Winnie the Pooh memory. He missed his last week of school, swim and physical therapy just before Spring Break…I’m sure he was missed.

Uncovered Blessings

As we celebrated Broc’s 8th birthday this month, I am reminded how blessed we truly are to have our three beautiful boys. For those of you who don’t know, I was pregnant with Broc at the same time my two best friends were pregnant with their babies. Once again all tests revealed a healthy baby. Within days we all delivered beautiful, healthy babies (pictured from lft to rt - Robby, Ayden and Broc). Mike and I were thrilled. To think back and imagine the blissfulness of those days and the innocence of my pregnancy…thank you God for my baby boys (a feeling that digs a bit deeper on the days of their birth... esp. knowing what we know now).



Carrie, Missy and I "preggo" with our bundles of Joy

The Schedule is Set

So, thanks’ again to Dr. Whitley for not making us go back and forth to MN within a three month span. Dr. Whitley okayed us to complete our semi-annual visit to MN in June since we would already be there for my Granny’s 90th birthday instead of our regularly scheduled March visit. Our schedule has been set as far as the “regulars” go, just waiting to hear back to see if we should also see ENT and Optometry doctors. Otherwise, this is our plan:
June 21st at 1pm – Dr. Whitley (geneticist)/ at 2:30pm Dr. Braulin (cardiologist)/Dr. Schwender (orthopedic) at 4:00pm
June 22nd at 10:10 – Dr. Regelmann (pulmonologist)/ at 11:15 Dr. Polgreen (endocrinologist)/after lunch again with Dr. Whitley to wrap it up
June 23rd as early as our body’s will take us…we are headed up North to celebrate with our family, my Grandma’s 90th birthday

Candles anyone?

A very kind and generous friend of mine, Sandy is a rep for Scentsy candles, the “wickless candles” that has designer warmer’s. Sandy has offered 100% of her commission to Trey’s medical account for anything that sells under Treys Treasures open party through the end of April. Please go to http://sandyf.scentsy.us to check out the fun designs and great smelling scents. Remember that all orders will be sent directly to you. Thank you in advance for your Scentsy candle purchase and for helping us “fight this fight” for Trey.

Phase I/II

SOURCE BioMarin Pharmaceutical Inc.


The GREAT news is out! I waited for the fundraiser to announce to everyone there the press release that was sent to us earlier in the month from Biomarin, the pharmaceutical company conducting the Phase I/II clinical trials on a potential treatment for Trey’s disorder, MPS IVA. God hear our prayers 

BIOMARIN REPORTS ENCOURAGING PRELIMINARY DATA ON BMN 110 FOR MPS IVA!!!

Their key observations were:
• Keratan sulfate levels fall within a few weeks after the start of therapy
• Improvements in 6-minute walk distance and 3-minute stair climb at 24 weeks are consistent with those observed with clinical studies for MPS I, MPS II and MPS IV (Trey's original diagnosis and treatment)
• The frequency and severity of infusion reactions appear comparable to those observed with Naglazyme (Trey's original infusion drug) and Aldurazyme.

“Although still early, we are encouraged by these initial signals of efficacy of GALNS enzyme replacement therapy for Morquio disease (MPS IVA). We plan to work closely with the FDA and other health authorities to finalize a Phase III protocol after the completion of the current study and have increased confidence that we will initiate a Phase III registration-enabling program by the fourth quarter of 2010 or the first quarter of 2011.”

Savannah's mommy & daddy

So for those of you who didn’t hear, we had a professional auctioneer at Trey’s fundraiser. John and his wife, Shelley came down from Northern California and provided their services for us free of charge! The neatest part about it all is the story of how John, Shelley and I came to meet. I was working (flight attendant) in the front of the airplane when the cutest baby doll came aboard in her jammies and began to inform us flight attendants that she had just met Cinderella. It was “love at first sight”…just look at that face! I haven’t gotten a bad letter yet from that flight that day, but 90% of the flight I spent talking to my new little friend, Savannah. We talked about how she also met Snow White and about the pictures she was drawing, Disneyland and her brand new baby brother (the smartest little girl with the clearest vocabulary). Savannah’s mom, Shelley and I talked about how they were “celebrating” following a recent medical scare with Savannah. Her situation led to Trey’s story…we talked awhile then I walked away to get back to work (but not for long). Within moments I came back to John and Shelley with Trey’s postcard about his event because it was the best thing I had to write his blog address on (never dreaming in a million years that they would ever come, or even knowing what John’s profession was, for that matter). The moment I handed them the card, they looked at one another and couldn’t believe their eyes. After I left the first time, John and Shelley instantly began to wonder what they could do to help Trey. So when I returned with the event postcard, they were shocked that the answer was just handed to them…Trey’s fundraiser was their answer and it was just weeks away. John told me what he did, asked if I already had an auctioneer for Trey’s event and offered his services. All I could think is that God works in amazing ways! What a huge blessing to have met such a darling of a little girl who made my day and to top it off, wonderful, caring parents that were the "icing on the cake". Those of you who were at Trey’s fundraiser heard first hand how remarkable John was…a true pro! Mike and I were so honored to have John and Shelley grace our presence with their talents and support. What a difference a professional makes and what a difference a flight makes. We love you guys...welcome to our family!

Trey was so into the winter Olympics that at his Physical therapy in the water, he decided he was going to race Mr. Josh in everything one of his pool exercises…I suggested that to determine who won that I would take a picture to get a "photo finish". Trey got such a “kick” out of it and of course had to check out the pictures after each and every race. And if that wasn’t enough Olympic “fun”... after reading our first blog about Trey loving the Olympics, good friends of ours, Kim and Charlie decided that Trey needed Charlie’s Police Olympic’s Gold Medal. Kim delivered it to Trey stating he was a true “champion”. Trey was so tickled to wear his new medal around his neck…it now hangs proudly in his sports adorned room.

Going Commando

So now that we’ve had the pure pleasure of babysitting “Trey’s Emma”, on many occasions, Trey has gotten to learn her likes and dislikes. Trey knows Emma doesn’t like her diapers dirty and helps me every time with changing them. He has also heard his Uncle Jeff and Aunt Stephanie (Emma’s mommy and daddy) say that Emma loves the “freeness” of having her diapers off…so wouldn’t ya know, two minutes after Trey helps change her diapers, he’s decided that she doesn’t like them on and is playing with her “commando”.

A familiar face

Mr. Mike is back in town after earning his masters certificate in the pediatric approach to the Anat Baniel method. Trey was so excited to see Mr. Mike (another great Mike in Trey’s life)! It was business a usual for Trey up on the massage table with Mr. Mike. I feel so fortunate that we can provide (through fundraising) this form of therapy to Trey and that he loves Mike and loves the massage…who wouldn’t?

Over the Top!

February 27, 2010




Wow how time flies…it’s already been a week since the “Big Event” and yet to me (and my mind & body) it still feel’s like it was yesterday. This fundraiser was OVER THE TOP to say the least. Just like we had envisioned it to be, there were excellent auction items, great food, an outstanding band and most importantly…a sea of magnificent people.

Mike and I couldn’t have asked for more for our baby, Trey. The tables were so full of auction items, we needed more, the people were so abundant, we need more places for them to eat, the check out for paying for the donated items was so long, we could have had triple the amount of check out tables and helpers...what wonderful problems to have! I could go on and on about how successful the event was, if you were there you got to witness first hand how much was done for our family and how blanketed with love and support we were that night.
Dan and Robert, you’ve out did yourselves once again after I didn’t think such was possible following the first Trey’s Treasure for Hope event you put on for us back in September 2008!


As Mike began to say and I tried to express (both choked up) that night on stage, we can’t begin to thank everyone name by name because there are just so many and just so much that goes into an event of this magnitude but Dan, Robert, Billy, Debby, the Gin Blossoms and the committee (including the emcee, DJ and auctioneer)…you guys are THE BEST!!! From the top to the bottom of our hearts that are so full of love and thanks to each and every one of you, we would like to express our sincerest gratitude, thank you, thank you , thank you for everything!