Saturday, March 26, 2011

11.20.2008 - A World Apart

From Julian's COTA journal

First of all, let me say that Julian is doing phenomenally well. Better that we could ever hope or dream. Reminds me of Ephesians 3:14-21 which reads:

"This is the reason I bow my knees before the Father of our Lord Jesus, the Messiah, from whom every family in heaven and on earth receives its name. I pray that he would give you, accord¬ing to his glorious riches, strength in your inner being and power through his Spirit, and that the Messiah would make his home in your hearts through faith. Then, having been rooted and grounded in love, you will be able to understand, along with all the saints, what is wide, long, high, and deep— that is, you will know the love of the Messiah, which transcends knowledge, and will be filled with all the fullness of God. Now to the one who can do infinitely more than all we can ask or imagine according to the power that is working among us— to him be glory in the church and in the Messiah Jesus to all generations, forever and ever! Amen."

Yes. God has given us more than all we can ask or imagine in his merciful dealings with our sunshine, our Julian. With it comes trials, most recently and most poignant being the current trial of us (Stacy and Julian) having to live apart from Dave for reasons of what is best medically for Julian at this time.

Being unable to adequately coordinate his care in Colorado, for reasons I will not go into here, Julian and I have relocated for the winter to Gilbert, Arizona in order that he can be followed by a Pediatric Nephrologist in this, the most critical year after transplant. Dave continues to live and work in Longmont, Colorado, and will continue to do so for the foreseeable future which is both necessary, a blessing (economically), and a hardship - we miss him. Currently he is able to visit us every weekend, from Thursday night through Sunday night.

It is not nearly enough, as both Julian and I crave and yearn for his presence. Julian was carrying a picture of he and his Daddy around today, and when I said "it's a picture of Julian!" He said "No. It's Julian and Daddy." He has inherited his mother's sense of literal interpretation and factual accuracy. (Oh boy!)

Dave and I felt, from our courtship, through our vows, through our early years as a married couple that we believed that God had orchestrated a long-distance relationship between us entirely through letters and the phone because He would call upon us one day to be separated physically for whatever reason, for whatever length of time HE determined. Well, I believe we have our specifics on that generality. This is the time. This is the "someday". And I'll admit. It's hard.

But I am calling on the Lord for HIS strength at this time to bear this burden. To get through this time. Because He said he'd give it. And who am I to question His wisdom?
That is the heart of the matter.

The details of the matter are that Julian is doing phenomenally well, and I get to see my husband this weekend. We pick him up from the airport around midnight.

For the nuts and bolts update, Julian has his bi-monthly labs tomorrow at Phoenix Chidren's Hospital, has his pre-biopsy labs the Monday after Thanksgiving, and then we fly to Palo Alto for his 6-month biopsy on December 5th. Please pray for no infection, no excessive bleeding, and no perforation of his bowel which happened last time. Pray there would be no signs of rejection, and that Julians kidney lasts 40+ years. Thank you for your prayers.

After that, we have a visit with his Pediatric Nephrologist here in Phoenix, who will be working closely with Palo Alto in administering care for Julian. We will be having clinic with him here in Phoenix (they actually have an East Valley Campus Extension a few miles from us!) once a month, and will travel to Palo Alto once every 3 months for clinic there. Then there is the 1 year biopsy, and the two year biopsy.

At our 1 year biopsy and clinic we will be meeting with his Urologist at Lucile Packard in order to discuss related issues with his bladder and ultimately make some decisions on when we will pursue operations to improve his current system.

So there is an update.