Sunday, January 16, 2005, 8 pm MST

Hello everyone! David here. I’m sitting at the little desk in Julian’s room, which is where my laptop lives when it’s at home. Julian is laying on his changing table where he can see me, and we’re “talking” as I type. It goes something like this: [Julian] “Rrmmm” [David] “Really? Then what happened?” “Rrrowwmmm baahhh!” “Wow!” “Weeow, mm-hm” “Well, what did you think about it?” “Geeee yooorah” [starts laughing]. I laugh with him, and so the conversation continues until either he a) falls asleep, b) gets hungry or c) needs his diaper changed. Again.

Parenting in the Phillips home has brought about this kind of drastic course of action (i.e. typing and talking at the same time) because if I don’t, I’ll never get an update posted. And we’ve had complaints. Relatives have told us that they check the website daily, in the hopes that some news will be updated, or that new pictures will be added to the collection. A good friend of ours threatened to remove us from his list of favorites if we didn’t post something soon. We hope you’re not disappointed.

A few things have changed in the Phillips home of late. I’m working again at Starbucks (paternity leave couldn’t last forever), but I’ve been transferred to Longmont from Estes Park, and am getting used to working again, in a new environment with a new team. It's hard leaving the crew in Estes Park, as they've been particularly involved in our lives over the past three months. To not have them in my life on a regular basis is a new challenge. Deep sigh... Anyway, today is my day off, and as such, Stacy is out doing some shopping (one of her few means of getting out and breathing fresh air), as I stay home with Julian. I love my days off! Julian interacts with us a lot more, and it’s just getting to be a lot of fun to hang out with him.

As far as Julian is concerned, probably the biggest change is that we’ve taken him off oxygen completely. We still monitor his oxygen saturation levels at night, just to be sure that he’s not trending into unsafe saturation levels, but by all external measures, it looks like Julian’s lungs are healed. We still don’t have permission from his care providers to take him into congested places (malls, church, airplanes), but it looks like we’re moving in that direction.

Julian also had a big appointment with his nephrologist (sp?) Dr. Ford, to assess his current condition. Stacy took Julian to get labs drawn the day before, and with his current labs, weight and height data, they’re able to make an assessment of his actual kidney function.

Until now, we’ve simply been going by his creatinine level to determine his kidney function. On Thursday, Dr. Ford introduced us to the Schwartz formula for calculating actual/estimated kidney function. It has to do with his creatinine, his height, and a constant, K, who’s origin I’m still unsure of. Anyway, by plugging the numbers, we determined that his actual total kidney function is around 10%. The reason his creatinine level has inched up over the past few weeks (currently 2.3, up from 2.1 two weeks ago) is that Julian is growing, so that as his height increases, his actual kidney function seems to be remaining constant. Now, 10% is right at the threshold where doctors usually decide to start dialysis, and a few years ago they would have gone strictly by the numbers. Today, however, they also take into account whether or not the patient is thriving: Julian is continuing to thrive, so for the time being, dialysis is forestalled.

The doctors (urology and nephrology) have both told us that eventually Julian will need a kidney transplant. Period. They don’t know when – it could be a year, it could be when he’s twenty – but in their estimation, a transplant is unavoidable. Now, we’ve seen enough by now to know that God’s ability to stump the medical professionals is pretty much without limit, so we’re continuing to pray that he will heal Julian’s kidneys (both of them), making dialysis and/or a transplant unnecessary. Please pray with us to this end.

It’s hard to go to the doctors and hear words like transplant and dialysis at this stage, now that Julian isn’t really attached to anything, and looks more and more like a normal baby. I guess the truth of the matter is that no matter what happens at this point, Julian is an extraordinary baby, who we’re pretty sure will grow up to be an extraordinary man. His story has forever changed our lives – and we’re only 3 months into chapter one! We don’t know what may come of all of this, but we’re praying that God will use Julian’s story for decades to come to bring glory to His name, and we’re honored to be along for the ride.

Now, onto some more here-and-now stuff:

A friend of mine recently asked me if we were still planning on moving to Arizona. Our answer at this time is “not now.” We can’t say where we’ll be in five years, but for the time being, Julian’s care providers here in Colorado seem to be uniquely qualified to look after him and guide us in his care. Not only that but they know him personally, and have a personal interest in seeing him thrive. Stacy recently called the Children’s Hospital Urology department on-call physician, to ask a question pertaining to Julian’s vasecostomy. The physician asked a few questions about Julian’s history, gave Stacy the information she needed, then proceeded to ask how his lungs and kidneys were doing. It seemed like once the physician recognized the case, his interest was piqued, and he wanted to know how Julian was doing for his own reasons. It seems like Julian has a fan club amongst the medical community here in Colorado, and we feel it’s in Julian’s best interest to keep him here to let him be cared for by those who know him by name.

Also, I’m working on another website that I’d like to invite you to visit. It’s called essentialbabystuff.com, and it was born (so to speak) out of our own experience with Julian. The first page of the first draft is posted (click on the link above), and although I’ll be adding to it and updating it over coming weeks and months, I’d be interested in hearing input on how to improve it. Basically, it’s a revenue generating website that takes advantage of the commission based systems in place with companies like Amazon.com and Google. No, Stacy and I aren’t spending our waking hours packing baby supplies into boxes for the UPS man to pick up in the morning – we’re simply directing web traffic to those who do, earning an extra income along the way. Please check it out and let us know what you think.

We sent out our Christmas cards earlier this month. Sorry to all of you who didn’t receive one: we could only reasonably afford 150, once printing and postage were taken into account. However, for those who wish, we’re posting the photo from the card with today’s update (above). The remaining three photos represent Julian’s progression off oxygen; the last photo was taken earlier today. Enjoy.

Sorry for the sporadic nature of our updates. I guess it’s unfair to say just when we’ll post new ones, as our days and schedule no longer seem to be our own – I’m sure all of you who have ever been parents know just what I’m talking about. Not long ago, I told my mom about all the interest in Julian’s story, that there were those out there who weren’t too happy with the shift from daily updates to “not-so-daily” updates. She suggested that it might be because viewers and visitors might want to know when it would be OK to stop praying for Julian. Selfishly, I don’t want people to ever stop praying for our son, but I know how it goes in real life. Stacy and I are thankful for the love and support we’ve received over the past three months – it’s been like nothing we’ve experience in our life, and it’s changed us. Thank you. And as for prayers for Julian, we’ll continue to pray for our son, and we invite you to do the same, as God gives you time and remembrance.

Until next time,

David