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.

Friday, April 27, 2007

360

I cannot say thank you enough to all of you who have continued to support us; the kindness of friends and strangers has been an incredibly meaningful experience to us and has made a positive impact on our lives. I think that things are beginning to come full circle and we are adjusting to our new "normal". Holt is now on full dosage of all of his meds and is making progress every day- his Rickets has almost completely subsided and he is working hard on his walking every day. He can stand and walk behind a walker- Mary Logan shouts to him "bend your knees Holt, bend your knees"! He has a warm and welcoming disposition, a "can do" spirit and a perpetual smile on his face. Although his vomiting has increased it is considered normal for the amount and type of meds that he takes. It is what it is.

I'm not really sure how much more I can say- its time to get on with life. Its time to go back to the only way we know- happy. We have made a 180 change and had a few really big surprises along the way but life just continues to come full circle. We are still incredibly blessed- we have 3 wonderful children- we laugh- we hug- we communicate- we teach- we learn- we appreciate- we listen- we share- and yes, we still cry. But its ok- we're also still the Grier's and we still love it.

2 comments:

Phil said...

Grier,
This is Phillips
I think about y'all a bunch. My boy, John, is about to turn two and I expect he and Holt could be buddies. Kirby (7) and Claude (5) would have a big time hanging out with Jack and Mary Logan and we live right around the corner.

I think of Holt when I'm holding my boys and I pray for him, Chrissy, Jack, Mary Logan, and you. It seems so close to me and mine, you know?

What can Leslie and I do? (On the farm, we have fishing, nature walks, bike rides, goats et al to pet, hay ride ....) Leslie loves to cook too!

Frannie Phillips said...

Hi Chrissy, Hi Jase,

I'm glad you guys are doing so well, though I'm sure that giving meds every 4-5 hours is just exhausting. We are praying for your strength through the nights... your endurance to run the long race, and the joy that comes with loving an appreciating each other and your three beautiful babies! Addison is not so sensitive (a guy thing maybe?) but Ava still loves to pray for Baby Holt every night. She'll be thrilled to hear he's walking! We're praying for a CURE and for strong blood, a strong immune system, strong bones, kidneys and organs for Holt... and no eye damage at all. We'll also start praying that he doesn't throw up at all, and that the meds don't upset his stomach. You are family. We love you. --Skip & Frances (& Ava, 3, Addison, 3, & Jake, 1)