Trey's Treasures: October 2014

Wednesday, October 15, 2014

Emotional Day

October 15, 2014

In October 1988, President Ronald Reagan Proclaimed October as National Pregnancy and Infant Loss Awareness Month.

There have been numerous days since Treys birth that I have felt extremely blessed to have him in my life but I'd have to say that today ranks right up there at the top.

A little over nine years ago, my dear friend Gia experienced the birth and death of her new born, Sable Marie. Almost 9 1/2 years ago to the day, I experienced the birth of my angel, Michael Trey. Gia and I went through the pure excitement and joy of pregnancy together. Needless to say, Trey is still with us whereas Gia and Baxter had to say goodbye to their angel Sable almost as soon as they welcomed her into this world.

Gia holding Trey just weeks before Sable would be born

Today it was with mixed emotions, that I was honored to be personally asked to join Gia and her family as they had the ribbon cutting ceremony for "Sableswings Comfort Room". A room for grieving parents to cope and pray in. A room in the maternity ward of the hospital that both Trey and Sable were born. This room goes to show that from the tragedy of death comes the birth of Gods larger plan.

I brought the boys with me as they not only witnessed the ribbon cutting ceremony but also the tears that I could not hold back (as hard as I tried). I tried to explain to them, in 14-9 year old language, where my emotions were stemming from. I told them that today was a reminder that WE ARE THE LUCKY ONES! I can't begin to count how many times I have felt the "elephant in the room", the "target on my back", the looks, the stares, the whispers of people feeling sorry. What they don't understand is that I AM LUCKY! I got to walk out of that hospital 9 1/2 years ago with my angel in hands. Some parents aren't so fortunate and no matter what the outcome is for Trey, he is here, he is ours! We get to experience a smile and personality that lights up every single room he walks into! We get to be reminded of the little things. We know not to take things for granted. We cherish because we have witnessed the alternative.

In Loving Memory and Rememberance of your Loss~xoxo, Cami

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.