Saturday, March 26, 2011

09.25.2008 - End In Sight

From Julian's COTA journal

Stacy here.

What a wonderful, stressful, life-impacting 6 months this last 6 months have been. Here we are, getting ready to leave almost 6 months exactly from when we left on April 7th to come to Lucile Packard Children's Hospital. Julian is doing wonderfully. We want to thank all of you for lifting us up in prayer as you have. Your support, both prayer and financial, have been an immense blessing to us that we can't even begin to repay or recount. Thank you. Julian will have his last "weekly" clinic here at Lucile Packard next Thursday, and we will have their seal of approval to journey off into the world (more on our plans near the bottom). We will come back once a month until January, when we will then begin to come back once every 3 months. We have 3 biopsies left, one at 6 months one at 1 year and one at 2 years from the date of transplant.

Julian's throat has healed nicely from having his tonsils out. He grew 2 cm in one week, and I suspect it was because prior to having his tonsils out he was only oxygenating in the low 80%'s for half the night. Not a great environment to grow and thrive, especially in the area of height. But once those tonsils were removed and he was able to be "fully oxygenated" all night long, he has just sprouted. We came to Lucile Packard with him wearing some 18-24 M clothing, and some 2T clothing. He is now, 6 months later, fully into 4T clothing both in length and girth. What an amazing testimony to whether he needed a kidney transplant or not. I'd say he did, and I'd say God provided the right kidney for the right kid.

I want to send another heartfelt "Thank You" to Cheryl Humble, who is our hero. She and Julian will share the bond of "blood relationship" for life. What a precious gift she gave when she gave her kidney, and our nighttime prayers always include this very special lady. I also want to thank Mrs. T and Bonnie Thomas, who have kept in touch with me through this stressful time. Their calm, steadfast words were always an encouragement to me (Stacy). And to all our other friends and family who made sure we knew were "there" for us if we needed anything. Thank you. Thanks Kim, my sis, and Bob and Mary, my father and his new bride!

Thank you COTA, who will continue to play an important role in our lives. Our fund was negative going into this month, and they allocated some funds from an anonymous giver to our account so we could cover some more of our expenses. Thank you anonymous giver. The wonderful thing about the COTA account is that Julian will be able to draw on it for his entire life, if we continue to raise funds. He can use the funds for transplant medication, and even, when the time comes, another transplant should one be needed.

So, many people have asked what our plans are from here. Well, we continue to call Colorado our home, and have a place in Longmont that Dave has been living in solo for the last 6 months, commuting on weekends to see us here in Palo Alto. We will return there and spend time up until Thanksgiving, when Julian and I will go visit family for several months in Gilbert, Arizona. We will escape the cold Colorado winter for warmer climes while Dave commutes on weekends to come see us. Then in April or so it will be back to Colorado for Julian and I until the following winter. I think we are the youngest snowbirds in the history of Arizona/Colorado. We will see how that arrangement works for awhile. We must remain residents of Colorado because Julian's insurance is Colorado-based. If we ever decide to relocate to Arizona and leave Colorado, we will need to have an alternate insurance solution set in place, whether it be employer-based should Dave ever get a job in Arizona, or what not. In that Julian is a Transplant recipient there aren't many insurance alternatives for us and so we must make our decisions based on the best insurance/care we can get for him.

So! If you were confused for awhile as to where we were actually going to live, I hope that clears it up!

Our address in Longmont is: 1048 Katy Lane Unit #B, Longmont CO 80504. So you can update your Christmas Letter list to that address, as we are no longer on Apple Valley Rd.

We leave here on October 3rd and will be back in Colorado on October 6th, stopping in L.A. to see friends and go to Disneyland, and swinging through Arizona to see family. We will continue to post updates on the COTA website, although they may be monthly (or for special prayer!) instead of weekly.

Thanks again for standing with us through what has been THE most challenging and stressful times in our lives thus far. And we thank the Lord ultimately for never giving us more than we could handle at any given time, although He must know me better than I know myself (obviously) because I'm convinced He came close once or twice...hopefully His refining fire caused some of my dross to surface (just ask my hubby and he'll nod his head on that one) and hopefully He has skimmed it off.