Cystinosis is a rare, inherited, metabolic disease that is characterized by the abnormal accumulation of the amino acid cystine in each cell. The build-up of cystine in the cells slowly and eventually destroys all major organs of the body including the kidneys, liver, eyes, muscles, bone marrow, thyroid and brain. Although medication is available to control some of the symptoms of this insidious disease, Cystinosis remains incurable.

Sunday, December 23, 2007

And on Earth Peace to Men of Good Will.

The title of this blog entry is deliberate and specifically intended to say thank you to all of you who have so altruistically kept us in your thoughts over this past year. Its literal translation is simple to decipher but its assimilated interpretation means so much more. It has become glaringly apparent to us that its not only the "what you belive" but also the "what you do and the why you do it" aspects of how you touch others that enables you to show us the compassion and concern that you do. We have been on the receiving end of so many meaningful acts of kindness over the past year that there seems to be little other explanation than people want to make a difference---they want to impact others in a positive way and they want to do good and they want their actions to reflect a deeper meaning. If you have ever walked your life and wondered the if's and how's of making a meaningful impact on others----look no further, you found it here and we continue to thank you. Thank you. Thank you. You have helped to raise our spirits, you have helped to raise our outlook, you have helped fill voids--simply put, you have given us hope. Thank you.

This Holiday season has been filled with introspection---much of it sad, some of it angry and all of it full of emotion but it would not be fair dichotomize everything into those two categories. Our private family time is filled with laughter, smiles and play. We hug, we kiss, we laugh, we cry, we bicker and moan and we never go to bed without a hug a kiss and an I love you. Mary Logan and Jack seem mature beyond their years in their understanding and their compassion and have taken leadership roles in ensuring that Holt always feels included during play and that he always has a smile on his face. In a very strange way I have come to realize that we have been given a gift---a gift that enables us to provide in a way that many people in the world are never able to experience---it occurred to me, you see, that every six hours of every day, we provide life to our own child.

Holt is doing better and after several unsuccessful attempts to validate his bloodwork we have finally received word that his Cystine levels have stabalized. The G-Tube has been a blessing in more ways than one in that not only can we ensure 100% compliance with his meds but also we are appropriately supplementing his caloric intake---as such, I'm very happy to announce that he is also now "officially" on the charts for height and weight (25th percentile for height and 1st percentile for weight).

I'll stop my rambling now--there was so much I wanted to say and I'm not sure how much sense what I did get to will actually make when I read it again....at any rate, my wife has recently informed me that "exhausted is the new happy"...we must be the happiest people on earth. Lol. Merry Christmas everyone and thank you. Go give your families a hug and tell them that you love them.

Love-
Jason

2 comments:

Ken Bauer said...

Jason-
I am sorry this has taken so long to write, I jsut heard of the news of Holt. You will be in our prayers each and every day. God works wonders, keep your head high brother,

Ken Bauer
ken@bauerfamilymedicine.com

Ken Bauer said...

Jason-
I am sorry this has taken so long to write, I jsut heard of the news of Holt. You will be in our prayers each and every day. God works wonders, keep your head high brother,

Ken Bauer
ken@bauerfamilymedicine.com