A Pinch to Grow an Inch!

Trey had his two month check up with his pediatrician today and would you BELIEVE that he grew?! According to the Trey's charts from the last few visits, he has grown 2 inches. I know to take this with a "grain of salt" but even a centimeter is music to my ears. Mike and I were moved to tears of joy. We were also informed that Trey was ounces from gaining a full pound and that his growth and height charts show him consistently going up - up - up ! We will have our next check up in three months but for now we will take every centimeter or INCH we can get. This is also good news for making a case to the drug provider of Trey's growth hormone, with these encouraging results, we may even qualify for continued assistance.

I also asked about Trey's right ear and the discharge that was coming from it, as he was complaining about it yesterday and woke up today with the outside of it all crusty. I was nervous that the tube may have fallen out and that he may have gotten an inner ear infection. More good news, the tubes are in place, the doctor saw a nice, open, view from one end to the other. Trey's ears are just draining and nothing more. We were given ear drops to dry up the fluid that is irritating Trey's outer ear. Mike had just gotten over swimmers ear and has been administering ear drops nightly. When Trey saw that he was given the same medicine as daddy he just couldn't wait to tell him all about it - "Just like Daddy" he said.

And if that wasn't enough positive news, we heard back from St. Joe's today and will continue our discussion with a follow up meeting at the end of September.

Today was preschool pictures for Trey and I must say, boy o' boy did my baby look handsome!

LET GO ~ LET GOD

A Great Start

This past Tuesday Mike and I attended the first of many meetings for the 2nd "Trey's Treasure Chest of Hope" fundraiser. It was so moving to see the faces that were there to offer any and all help to make this another successful event as well as hearing about all the others that couldn't make it but were "on board".
I know I've said this before but there are times when the words THANK YOU just aren't enough...again, this is one of those times! A huge THANK YOU to Dan and Robert for taking this on and for being so motivated and organized! To see first hand that they obviously put their heart and soul into making sure this will be a tremendous success and for that alone, THANK YOU just doesn't seem like enough.
* "Trey's Treasure Chest of Hope" will take place February 2010 *

Babysitting Bella

Trey and I had the pure pleasure of babysitting our new “four-legged” niece, Bella. The day was so much fun seeing Trey and Bella frolicking, chasing and bonding with one another. Trey has never had a puppy to play with (our Golden Retrievers are “big dogs” to Trey), to see him play with an animal his size was so entertaining. Trey decided Bella needed to take a nap when he did, and she was more than ready…”Mr. Busy” gave this new little puppy a run for her money in the “energy” department. Thank you Auntie Cathy and Uncle Bryan for the experience…Trey loves his “Bewwa”!

Meeting New Friends

August 7, 2009

Finally after emails back and forth today was the day that Trey and I would at last get to meet Kianna, Justin and their mom, Darla. HopeKids put Darla and I in touch with one another a few months ago but busy lives and the desire that we could somehow coordinate both of our schedules as well as with the newspaper photographers so that he could catch this first meeting was just that…wishful thinking. So, today the three kids met as well as Darla and I (face to face). After some “warming up” on Trey’s part, the kids played games and by the end of the visit, Trey had found two new friends. Darla informed me that this was the first time Kianna and Justin had met another person with MPSIV, just like them. Justin (15) and Kianna (13) were so patient with Trey…after a few hours with “Mr. Busy” I question when they they’d like to hang out with him again. When Mike walked through the door from work, the very first thing Trey said to Dad dy was, “I have friends”. From what we understand (I am careful how I say this anymore) our three are the only MPS IV children in the state of Arizona . How great is it that we live so close and that the kids really took a liking to one another? I am so excited to have Darla as a friend and for Trey to have Justin and Kianna in his life today and tomorrow when their friendship will mean the world to him.

Alone with my THOUGHTS

August 6, 2009


I fell asleep after the news last night then woke up only to find myself alone with my thoughts. I checked in on the boys and just stared in awe at their angelic faces. I thanked God for each of them then went back to our room. Still not able to sleep, I did what I do on most nights that this happens and took out a book of mine that always, always comforts me. I turned the book to today’s date and low and behold, this is what it read;

Sometimes God causes severe winds of trial to blow upon his children to develop their gifts. Just as a torch burns more brightly when waved back and forth and just as a juniper plant smells sweetest when thrown into the flames, so the richest qualities of a Christian often arise under the strong winds of suffering and adversity. Bruised hearts often emit the fragrance that God loves to smell.

Again, my worries were put to ease as asleep I went.

Maybe one day I’ll understand but for now… thanks to priceless books like these, at lease I am able to rest.

The Heart of a Child...Amazing

5 Fundraiser Spotlights-all given by kids under 21!
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Tempe Explorer Program
Christmas 2008


The Tempe Police Department’s Explorer Program is for young men and women ages 14-21 who are interested in law enforcement as a possible career. Among other respectable tasks the Explorer Program is involved in community service projects. We strive for an inclusive group of young men & women who not only believe in themselves but also in giving back to their community.

At the command of Sergeant Kat herine Click, the Explorer’s awarded our family their community service project. These kids “raided” the local Target and bought Christmas presents for our entire family. This group of explorers were so kind as to ask for Drake, Broc and Trey’s Christmas list and then beyond our imagination the kids were showered with a truck load of presents! Mike and I were also graced with their kindness!

Not to have to worry about the money and the shopping at a time when we were traveling back and forth to Minnesota in the midst of Trey’s misdiagnosis…this was a gift we will never forget and one you can’t put a price tag on. Thank you for your generosity, for your kindness, for the love you bestowed upon us at such a wearisome time…thank you just doesn’t seem like enough for all you did for us.



As told by Kathie;

Cami,

I hope all of the presents work out OK and that your family has a great holiday. I am attaching a photo of the Explorers on their big shopping trip. As you can see they had a great time! I don't think this Target will ever be the same.

Take care, Kathie Click
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Cortez High Swim Team Fundraiser- October 2008


The swim coach of Cortez High School , Mr. Ben Hazelton reached out to us through the article printed in the Arizona Republic . Lucky for us, Ben said Trey reminded him of his young son, Kyle and in turn was moved to help. A complete stranger willing to put in so much time and effort towards our angel was utterly humbling. I was in awe with Ben’s determination and drive to turn his ideas of earning money into successful fundraisers for Trey. After countless rejections from the district and the city, Mr. Hazelton was still able to produce two very victorious fundraisers. Although on a much smaller scale than Ben had originally envisioned, we were so impressed with the coach and his team’s efforts.

Ben writes, “We had our Swim-A-Thon for Trey today and by the # of laps done, you would be proud. Adding together all the laps done by the swimmers, a total of 2,198 laps were done. This is equal to 54,950 meters or in laymen's terms over 36 miles in the water! I jumped in myself for 104 laps and our farthest swimmer was logged in at 226 total laps!”

To add to their accomplishments, these kids swam in a cold pool on October 3rd! Can you say dedication by these remarkable kids?

During the car wash, 55 vehicles were washed, only 3 of them being car’s with the rest being minivans,SUV’s and trucks! The team washed for an arduous 4 ½ hours!!! Another successful event entirely fashioned by coach Hazelton.


Our family was invited to the Cortez Swim Teams end of the year banquet to be presented with the proceeds and to have the honor of meeting Mr. Hazelton and his team. The team too was so very excited to meet Trey and to be able to put a face with the name of the baby they swam and washed cars for…as you can imagine, the girls loved Trey and his blonde curls. We in turn were so privileged to meet the man himself, Mr. Hazelton as well as all his incredible team members. We were so impressed with every one of the high schoolers we met that night. Thank you for the opportunity to be in your graces Ben and the Cortez Swim Team.

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Emily’s Birthday Wish – October 2008



In lieu of presents for herself, this was what Emily asked for…



What 9 year old’s have hearts this big??? How lucky are we to have friends like the Giarrizzo’s to raise a daughter like Emily.



I added a few of the photos taken of Emily and her a her party as well as when she so sweetly gave Trey the poster and “Treasures” they raised at her Birthday party and on Halloween night.



As written by Emily’s Mom;

What a wonderful opportunity it was for Emily to do this, and it was truly heartwarming to see all the kids so fired up to help Trey. They all signed a poster for him and while trick-or-treating, they asked every house if they would donate towards Trey’s fight. It was heart warming, and the response was great. At the house the kids signed the poster & ate, next they went to a “haunted house” here in the community, then they piled into 4 SUVs to trick-or-treat in the neighborhood (it was a caravan from house to house). We returned back to the clubhouse for a costume contest, snacks, cider & cocoa. The kids that came up from the Valley (11 out of 21) spent the night.

Much love,

Kris

Robby's Winnings November 2008




As told by Robby’s mom, Carrie;



Our family went to a Thunderbird High School Football game where the band was holding a 50/50 raffle. To our surprise, we won! We won $122.00!!! Our youngest son Robbie asked what we should do with the money. I explained that “God gave us a gift, when He gives a gift (something you don’t work for) you give it to somebody who can use it to do something good”. Robbie thought for a moment and decided that he wanted to give the money to his friend Trey. I was thinking Robby’s first response would be to give back to their church and was pleasantly surprised that we remember what Trey was going through and wanted to help him.



Robby’s sweet, kind, and generous ways continued…

February 2009

For Robby’s Birthday with his friends, he asked if we could ask his friends to give donations to Trey instead of gifts for him (he already get’s a zillion from family alone). Full of pride, each of Robby’s invitations accompanied a piece of paper explaining that a dear friend of mine has a son with a genetic disorder that requires medical assistance and that Robbie would like for you to give donations in lieu of gifts for his 8th birthday.



*Robbie has known Trey all his life. Cami and I were pregnant together with Robbie and Broc



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POPCORN AND LEMONADE FUNDRAISER

As told by Noah and Megan Bulson:
Mommy told us about Trey and we worked together as a family to decide how we could help and raise money. We recruited our friends the Renwick's and decided on a lemonade and popcorn stand. We started telling everyone we could in the neighborhood a few days before. We worked together to make the poster and lemonade. After school, we sat at our neighborhood park and handed out popcorn and lemonade to anyone who donated money. We had a flier out about Trey and told everyone about him. We were amazed how many neighbors donated... kids were emptying out their piggy banks and Mommy’s were giving money too! All in all we raised $93 which our parents matched for a total of $200! We had fun with our neighbors and we were able to help Trey.