Monday, February 02, 2009

06.29.2008 - Update

From Julian's COTA journal.

Hello everyone. Julian is doing great!

We are down to twice--weekly clinics and twice-weekly labs. Doctor Alexander was asking us what our time frame was for going "home". I advised him that we would prefer to stay under Palo Altos watchful eye for up to a year. We don't know if that means we will stay here in the Ronald McDonald House, with Dave commuting, for that entire time, or if we will go 6 months from the date of transplant and re-evaluate whether we need to stay here for longer or not. Most of the things that can "happen" to a transplant recipient will be discovered in the first year, so it is important that he is very well monitored during this time. I feel a bit like Israel did in the desert, with God's cloud leading them by day and his pillar of fire leading them by night...right now I feel as though the cloud and the fire are here, and they aren't moving, so neither will we. We only want what is best for Julian, and right now that means we are here. Dave continues to live in and work in Colorado, with us seeing him on the weekends. So far it is working, although it is not an ideally "normal" situation. But then again, what is normal?

One super-cool thing happened as we were walking along the beach at Montara State Beach just north of Half Moon Bay, yesterday. Julian and Dave were sitting and watching the surfers and the waves, and I was combing the beach for sea-glass of various colors. I found a few little green ones, some white ones, and then my eye happened upon a very unusual one. It was blue, but that is not what made it unusual. It was the perfect shape of a kidney/kidney bean, and of a pretty decent size. It looked very much like the lapis lazuli "bean necklace" that Tiffany and Company sells in their jewelry stores. It was quite a find, as that lapiz lazuli "kidney bean" necklace is Julian's very favorite item in the store! At over $400 there was no way we could get it for him, that would have been pretty insane. But God provided, on the beach, in the sand, and I picked it up. Julian loves it. I told him God put it there for him. You see, Cheryl and I both have a little silver "kidney bean" necklace as a sort of memorial for God's provision of her kidney for Julian's Transplant. And now Julian has a little memorial stone as well, in addition to the very real memorial of an actual kidney inside his body! Ephesians 3:20 comes to mind, "Now glory be to God! By His mighty power at work within us, He is able to accomplish infinitely more than we would ever dare to ask or hope. May He be given glory in the church and in Christ Jesus forever and ever through endless ages. Amen."

Thank you for continuing to pray for us, and please keep Julian's little lungs in particular prayer this week as you think of it. The reports that Northern California has been blanketed by a haze of smoke from the 1,000+ individual wildfires burning in this state are definitely true. We have been affected here in Palo Alto for more than 3 days, with visible smokey haze and the smell of smoke in the background. Since Julian's lungs have very little "reserve" they are being impacted and irritated by the conditions, leading to an athsmatic-like cough and allergy-like symptoms. Yesterday we bought an air purifier from Costco to put in our little room here at the Ronald McDonald House in order to try to minimize his discomfort, as well as reduce any risk of the irritation leading to a more serious condition such as allergy-driven bronchitis, or worse. He is at high risk for pnuemonia anyway, so of course we are a bit worried. Please pray for him as we get through the next couple weeks and pray that they get these fires under control and contained.