Trey's Treasures: January 2012

Wednesday, January 11, 2012

Fiesta Bowl FUN!

January 2, 2012

I know my friend would not want to be mentioned,given credit for and showered with all the love and thanks I can for the remarkable time we had at the Fiesta Bowl this past week...but all thanks to her and the 5 tickets she bought for us to enjoy such a thrilling event! Even though our Draker's Stanford Cardinals didn't win, we had 'edge of our seats' fun! Friends like mine are far and few between, Thank You Nicole for our Christmas gift-you, yourself are a gift to us!

Happy New Year

January 1, 2012

Another New Year's Eve with out Mike as he had to work, again! The boys and I had a good time making Scookies, playing Rack-O and lighting off fireworks with the neighbors. The boys saved some of their fireworks to light off with Mike the following night and had a great time doing so with "Daddy Disney"!

Happy New Year to each and everyone of you and a ginormous Thank You for following another year of Trey's journey on his blog. None of us know what 2012 has in store for us but we do know that even if Trey is part of the placebo group in these clinical trials, that it is only for the first six months (which for us will come to an end in April). After that time, Trey will be given the ever so needed Enzyme Replacement for his life threatening disorder, one that we pray will extend his life and possibly even provide internal and external benefits. Benefits that we will be able to recognize in Trey on the outside, and after the trial is over, will be measured and reported to us in the form of positive, encouraging results on the inside.
We wish for all of you and your families the same news of hope and a positive 2012!

Lovin' another nurse

December 29, 2011

Devora was Trey's infusion nurse today and boy o'boy did she have his number within a moments time. Another nurse that we love here in Oakland and are so appreciative of! Devora was spot on with Trey when she came back from the toy box with a bear...a green soccer bear none the less! Trey loves his new bear, "kicks" almost as much a Miss Devora :o)

Merry Christmas

December 25, 2011

Ours was a very Merry Christmas, as all three of the boys revelled in the "spirit" of Santa Claus and all his wonder...another year for Mike and I to take in the magic.
God Bless~Cami

*Auntie Claus and Uncle B happy to see that once again, Trey was elated with their gift to him...A Bears Jersey-Brian Urlacher...but of course!

An EXTRA Special Gift

December 24, 2011
The continuation of the Pearl "Adopt a Family" fundraiser...
Instead of presenting our family with Visa gift cards, Tammy and I decided to present Trey with the one and only toy on his Christmas list...a Razor 4-wheeler with (according to Trey) "real" tires. As a result of all the hard work, Tammy, my brother, Steve and the rest of the employees of Pearl Sushi, Tammy was able to come through with a gift for Trey that Mike and I couldn't afford, the one gift that we had to keep making up excuses for why Santa wouldn't be able to deliver to Trey as well. Although Trey's expression didn't do justice to what I just know he was feeling inside when Steve and Tammy furnished his Christmas wish, Mike and I were once again grateful for friends and family who bestow their love and support on our child, time and time again. Tammy also remembered Drake and Broc as well as Mike and I in her generosity. The older boys received Visa gift cards and Mike and I a dinner out. I realize that you can't always get your children everything they ask for at Christmas time but knowing all Trey has gone through these past few months with the travel, long days, and test after test associated with the clinical trials, this gift couldn't begin to have a price tag attached to it...in my book, Trey was very deserving of his EXTRA Special gift and Mike and I are EXTRA blessed to have Tammy in our lives, for loving and caring for us as she has this Christmas!

WHAT IS MPS?

Mucopolysaccharidoses (MPS) is a genetic lysosomal storage disease caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

WHAT IS MPS IVA?

Mucopolysaccharidosis IVA (MPS IVA, also known as Morquio A Syndrome) is a disorder characterized by deficient activity of N-acetylgalactosamine 6-sulfatase (GALNS) causing excessive lysosomal storage of keratan sulfate (KS). This excessive storage causes a systemic skeletal dysplasia, short stature, and joint abnormalities, which limit mobility and endurance. Malformation of the thorax as well as macrophage dysfunction in the lung likely impairs respiratory function and contributes to sinopulmonary infections. Odontoid dysplasia and ligamentous laxity can commonly cause cervical spinal instability and potentially spinal cord compression. Other symptoms may include recurrent infections, hearing loss, corneal clouding, and heart valvular disease. Initial symptoms often become evident in the first five years of life. Depending on severity of the disorder, age of diagnosis will vary. Many patients become wheelchair dependent in their second decade of life and undergo numerous surgeries to alleviate life-threatening conditions caused by the underlying enzyme deficiency.

The incidence estimates for MPS IVA vary widely, between one in 200,000 live births to one in 300,000 live births. Approximately 400 patients worldwide have been identified and tracked through the International Morquio Organization (IMO) survey. There are already more MPS IVA patients identified through this registry than there are MPS VI patients being treated with Naglazyme worldwide. Based on the number of identified patients to date, the prevalence of patients with MPS IVA appears similar to that with MPS I.

Quotes that INSPIRE

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."

“The Will of God will never take you where the Grace of God will not protect you”

When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly!

Life may not be the party we hoped for, but while we are here we might as well dance!

May your Troubles be less,

Your blessings be more,

And Nothing but Happiness

come through your door.

Our suffering can make us more sensitive servants of God. People who have known pain are able to reach out with compassion to others who hurt. If you have suffered, ask God how your experience can be used to help others.

Beautiful One,
Just Believe...

Waiting may be the single hardest thing we have to do. In the Bible, waiting is closely associated with faith. Sometimes the words are used interchangeably. While we may not like it, waiting is a necessary part of the Christian life. What God does in us while we wait is as important as what it is we are waiting for. Waiting is not easy. It may bring pain. It will try us and test us. It demands patience. It exacts a price…

When our eyes are on the sunshine, the rain doesn't seem so bad. When our eyes are on the rain, even the smallest drop seems like a storm.

THE POWER OF PRAYER. I believe that God only gives three answers to prayer:

1. "Yes!"
2. "Not yet."
3. "I have something better in mind."

God still sits on the throne.You may be going through a tough time right now but God is getting ready to bless you in a way that you cannot imagine.