Trey's Treasures: We are counting our lucky stars and thanking our every "Treasure"...YOU !

Thursday, March 13, 2008

We are counting our lucky stars and thanking our every "Treasure"...YOU !

Hi Everyone,

We have lots of great news to pass along in Update #3...

Trey's eye appointment on January 30th was excellent! He had no cornea clouding -hurray! According to the Doc., Trey's appointment was as normal as any routine exam. We have a follow up appointment scheduled four months from now .

Trey's surgery was yesterday and boy did we feel the love (and are still receiving e-mails and phone calls today).Thank you for all your thoughts and prayers! This child of ours is such a trooper, the surgeries went off without a hitch! The incision for the hernia is so small and looks wonderful. Trey's surgeon said he was expecting the worst given the situation but all he was presented with was an A-typical hernia, nothing out of the norm to report :o) The port is still bandaged up so I can't see much however... Trey hasn't even given it a second thought, not picked at it, pushed on it, questioned it, nothing! Although Trey took awhile to really wake up from the anesthesia when he did, not a single tear was shed. At the least, the doctor had hoped Trey would get some fluids down him last night but again, everything better than expected... Trey ate, drank, ate and drank some more. Today has been like any other day, not a single bump in the road.

We'll keep you posted on the results of the MRI...

Infusions start Wednesday, Feb. 13th and again we are praying for nothing but the best. Our hopes are that Trey won't have a reaction to the treatment. If all goes well we will be scheduled for Wednesday infusions from here on out.

The book fundraiser is over and for doing nothing more than sending out an e-mail to our family and friends, we are so blessed to report that $330.61 will be contributed to Trey's medical fund! Also, as a result of the sales, we have earned $505 in "free books" which we will intern donate as raffle prizes for the golf tournament. Thank you to all who ordered and a super, huge thank you to Margo!

Again, I've attached a few pictures...Drake and Broc the "cool" big brothers, Trey following his nurse on the truck Phoenix Children's Hospital let him ride down the hall to his surgery, and Trey after his "big day".

We are counting our lucky stars and thanking our
every "Treasure"...YOU !

All our love,

Cami, Mike and the Lane boys :o)

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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.