July 2, 2005 August 1, 2005 September 21, 2005
Overview
Hello everyone! Yes, it's been a long time since we've written an update. I can't say necessarily that that's a bad thing, as the better Julian is doing, the less compelled we are to write. However, I understand that many of you have been waiting patiently for some news, so we're posting kind of a group update, covering everything since, well, the last update.
Here's the synopsis: by most counts, Julian is doing very well. He's pink, puffy and, for the most part (apart from normal baby-stuff), very happy. His physio-therapist is thrilled with his progress from a developmental point of view, and his kidneys are continuing to improve incrementally - more on that later. However, Julian is not growing as much as his doctors would like. He's always been in the lower percentiles for weight and length, but in recent months his curve has come "off the chart" altogether.
We understand that every child is different, that every baby has their own growth curve, and we've heard plenty of stories of how someone's baby was small and now they're fine, and that's all been very encouraging for us. However, we have reason to believe that Julian's case may be different. On June 30, he weighed 6.5 kilograms (see June update); as of this writing, Julian's weight is about 6.8 kilograms - just barely over 15 pounds. In a little less than 3 months, he's gained 9 ounces. As of Julian's last Nephrology appointment (see Sept. update), Julian's weight curve has hit a plateau. He's not gaining weight - at all.
We've worked with the Nephrology clinic dietician, and have a meeting scheduled with an Occupational Therapist to determine whether Julian has developed a food aversion. It seems as if every time we try to fortify Julian's food, to increase the caloric density of his formula, his appetite automatically adjusts downward. While he needs a bare minimum of 80 calories/kilo to sustain growth, he doesn't seem to be hungry for more than about 60 - 65.
Please pray that Julian's appetite returns. After his surgery in May, Stacy in particular was diligent in praying that Julian would have a healthy appetite, and his intake shot up over 600 calories per day, which at the time was probably in excess of 100 calories per kilo. We believe that God can provide what Julian needs, but we need you to pray with us. It's hard and we're tired.
It's a catch 22: on the one hand, Julian seems so happy and appears to be doing so well; on the other, he needs to grow. Do you force him to eat? Do you wait 'til he asks for it? These are questions that we've been over and over again with each other and with his doctors. We've blown through any easy answers, and are now in need, once again, of divine intervention. You'd think we'd be used to it by now...
Thanks for your prayers. We'll keep you posted on his progress.
"And as He passed by, He saw a man blind from birth. And His disciples asked Him, saying, 'Rabbi, who sinned, this man or his parents, that he should be born blind?' Jesus answered, 'It was neither that this man sinned nor his parents; but it was in order that the works of God might be displayed in him." John 9:1-3
Wow, if this isn't a life verse for Julian's life thus far, I don't know what is. Can you imagine, having a 'life verse' at 8-1/2 months old? Incredible, but true. Julian is doing great. His folic acid levels are still high, but the Red Blood Cell Folate which is a measure of long-term storage can finally be said it is in the normal range at 600 down from I think 1400 or 1700 last time. The Serum folate, however, is still unmeasurable, being 'Greater Than 24'.
Julian had his surgery on May 26th, which we updated you on. On June 3rd, I asked God for a miracle. I'm glad I have more than three! Julian's appetite hadn't picked up from the surgery yet, as he was still recovering. But I wrote in the front of my Bible the date, and that I was praying that Julian have the appetite of a lion. I reminded God about the widow and the judge in the Bible, where the widow went every day to ask the judge to grant her request, and finally because of her persistence he did. I told God I was no widow (and thanked Him for that!) but that I was going to come to Him every day until He granted my request. I did not have to wait long. The very next day Julian ate 26 ounces of milk. Previously he had struggled to get to 24, so 26 was a very big deal to me. The next day, 26 again. The next day and every day after for about 2 weeks he exceeded 30 ounces a day, averaging about 35! And he was actually crying for food! It may not sound like a huge thing reading this account, but if you had lived with my little boy for the last 7 months you would know what a big deal it was! His appetite had been fine until we started poisoning him with folic acid. He had gained 3 pounds in 2 months after being home from the hospital. Then the 10 mg of folic acid per day started, and he had no appetite and leveled off. On June 3rd he weighed 5.95 kg, which is 13 pounds. On June 30th he weighed 6.5 kg which is 14 pounds 5 ounces. So, that means he gained a pound and a half in a month! That is the same rate he was at when he first came home from the hospital and had an appetite!
Now, a few days ago he dropped off again and I'm not sure why... but his white cell count was elevated a bit at the last lab and we think he may have had a virus or infection of some kind. I had also begun giving him a feeding a day of rice cereal. This brought his milk down again, and stopped him up (a tad constipated!) Time to pray again! Please join with me this time in prayer that Julian would get the appetite of a lion. Thank you.
Stacy
Julian's overall condition is very good. Hes 9-1/2 months old now - pretty soon we'll be staring down his first birthday (can you believe it?) - and although he's not growing physically as much as we'd like, he's pink, puffy and very very happy. Cognitively, he's doing great! His physical therapist is thrilled with his progress and has told us that he's one of the most verbal babies she's ever worked with he loves to interact with those around him. His first tooth is coming in, which of course causes him some measure of discomfort; but it's an exciting milestone for us, albeit a small one. Every parent thinks that their child is the most special little person on the planet, and we're no exception. Julian is like sunshine on a cloudy day for us he's so much fun to be with.
At present, Julian's favorite toys are the pot rack in the kitchen - great for loud, percussive noises - and my glasses. Weve had to stop the whole glasses thing though. If it were just finger prints on the lenses, it wouldn't be so bad, but Julian has a way of folding them up that I'm not sure the manufacturer ever had in mind. He also loves his teething toys as well, and just discovered a new one last night the lid to Stacy's Le Cruset Dutch Oven. I guess when the gums hurt, anything will do.
Julian had his first encounter with a celebrity last week. A production company was filming segments of Catch And Release starring (among others) Jennifer Garner, on Pearl Street in Boulder. While I never saw any of the goings - on myself, Stacy and Julian had the good fortune to meet Jennifer while she was walking out of a cafe. She though Julian was adorable (!) and was kind enough to sign his stroller. Stacy reports that Julian was un-phased by the encounter and treated Jennifer like he treats everyone else with a smile.
One of our favorite past times with Julian is coffee. Boulder County has more gourmet coffee joints per capita than anywhere else in the country (praise God!) save Seattle and maybe San Francisco. That's perfect, as it gives us plenty of options when it comes time to go hang out. The picture above is of Julian and me, enjoying our favorite coffee shop, Amante. Don't be fooled Julian had help when it actually came to drinking that cappuccino. The little cup was so cute though, we just couldn't resist the chance for a picture.
David
Julian had two doctor's appointments over the past two weeks: Nephrology (kidneys) last week, and Urology (bladder) today. For the most part, the news was good.
Nephrology is the department that keeps tabs on Julian's blood work and diet, to make sure that his system is staying in balance, and making adjustments when necessary. Here's the condensed version:
Julian's creatinine is down to 1.6, which is an incremental improvement. For several months it's been hovering around the 1.8 area, so we're hoping that this is indicative of a downward trend. That, combined with Julian's increase in length 25.4 tells us that his total kidney clearance has increased to around 20% - up from about 16% a few months back. This is good news!
As mentioned in the preamble however, while his length is increasing, his weight is not. Julian needs to grow please pray toward that end.
Today, we met with Dr. Koyle, Julian's Urologist. Dr. Koyle is the one who performed Julian's surgery last May, and he seems to think that Julian may be up for the urethral valve ablation (!) next summer. As such, we'll be visiting Dr. Koyle next spring for a follow-up visit before scheduling his actual surgery the following summer.
Interestingly, the subject of kidney transplant came up during both visits. While Dr. Koyle is still pretty convinced that Julian will probably need a transplant prior to puberty, the Doctors at the Nephrology center seem to think that a transplant may not be imminent. Puberty will be a time when we'd need to be extra mindful of Julian's condition and his progress, but he might actually get by with his own kidneys. Wouldn't that be a miracle! Not that we expect anything less by now at this point we're simply happy to have Julian at all.
Another issue surfaced that we are going to require wisdom on: as Julian is so small, the possibility of growth hormones is a real one. We won't have to make a decision on that for another year or more, so there's plenty of time to figure it out, but sooner or later we'll have to make a decision. Please pray that we make a good one.
It occurred to me recently that watching God work on Julian has been like watching a professional billiard player. When playing pool, the average Joe simply tries to line up a shot and sink a ball, hoping like crazy that he doesn't scratch or, worse yet, sink the 8-ball, ending the game prematurely. A pro not only lines up the current shot, he lines up the next one as well. When he can, he'll hedge his shot so that if he misses, he doesn't give up an easy play to his opponent.
However, when the game is on the line, he may do things that appear, to the casual observer, reckless. Even careless.
He'll graze the 8-ball, seemingly by mistake, nudging it in the direction of a pocket. He'll pass up an easy shot to attempt a more difficult line, knowing that he can come back and sink the hanger later on. He'll land the cue ball deep in enemy territory, all but giving up the game, were it not for the stripe that dropped after a moment's hesitation on the edge of the pocket.
Some people enjoy tractor pulls or fantasy football. Not me. This, this is the kind of action that puts me on the edge of my seat and will probably lead to the premature ulceration of my stomach lining. And that's just pool.
Stacy and I wonder sometimes why God doesn't take the shots that seem so obvious to us at the time. Is there a good reason now why Julian's weight isn't increasing? I hope so, although I may never know for sure. From here it looks like the game is on the line, but deep in my heart, I know that God is a Pro. OK, that sounds flippant, but I think you know what I mean. God has brought us this far, and looking back, the close calls make sense: the shots dropped and ultimately game after game has been won. Looking ahead though, the games only get more challenging. And watching from the sidelines doesn't get any easier with experience.
Please pray with us as Stacy and I try to make sense out of all of this. But in the mean time, enjoy our little boy just as he is. We sure are!
David