OK. I know some of you out there know... but we're going to clear up any questions... hopefully... right here.
Owen has PKU. Every infant in Oregon gets a PKU screening, and Owen was the one out of 15,000 (roughly) that lacks the necessary enzyme to process all of the phenylalanine which is found in all naturally occuring proteins and many other foods.
Rather than try and detail what PKU, or Phenylketonuria, is here, there are some better places out there that explain things quite well.
Google searching for PKU will give quite a few explanations. The most to-the-point one we've seen is available
here. That page is part of
PKU News... which has some great other resources available as well. If you're concerned about Owen at all, spending a bit of time there can answer quite a few questions. The
history of the discovery and treatment of PKU is quite interesting and goes to show how far our medical community has come to handle conditions like this quite well.
So, once you educate yourself a bit about this whole thing... you can go back and think about one element that you'll see in all of the explanations. Many of them say "mental retardation and other neurological problems when treatment is not started within the first few weeks of life." Well, Owen started his treatment at two weeks and five days, and had elevated but not extremely elevated amounts of the phenylalanine. So, even though the words like 'mental retardation' hit home very forcefully with all of us, it serves more as a motivation to follow the diet needed rather than some sort of impending doom. Andrea and I fully expect Owen to be smarter and more able bodied than both of us.
The basic thing that we need all of our family and friends to remember is that he can be spoiled with attention, things, reading, music, play, walks outside, and only appropirate food. Even though he may really look like a kid that needs a cookie when he gets older, an apple might be a better idea. We are not sure how flexible his diet is going to be... that will take a while to figure out... but we need everyone's promise that food will not be given to Owen unless it is absolutely known to be OK. In fact, food logging will probably be an important element in Owen's life from here on out, so we'll need help with that. In turn, we'll do our best to educate you all to know what is allowed for Owen. It's only fair... and yes, it can get more exciting than apples.
For all of you who are worrying about this, please stop. Owen probably has a better chance than a lot of kids out there of growing up and being healthy, vibrant, smart and strong. Why? Well, Andrea and I know that a huge part of being the best parents possible for Owen is providing him with a stellar diet. For so many parents, cheap and not-so-healthy foods are always an easy option, even if everyone knows they're not the best thing to do. A little can't hurt, right? Well, we know that's not an option here, so we won't ever consider it. The food rules are different for Owen, but how many people are set up from 3 weeks old to have the perfect diet? Not many...
So, other than the special diet, you might be wondering what is involved with monitoring PKU? Well, the monitoring will be done at the Child Development and Rehabilitation Center, which is part of OHSU's metabolic clinic in Portland. (that's why he got a special cold-weather-Portland-going-outfit, shown below)
These two wonderful women with Owen and Andrea are Stacey (left) and Kathleen (on the right) who will be the expert help maintaining the proper diet. He'll be seeing them monthly, at least for a while.
Part of the diet right now is a very special formula that helps Owen keep his phenylalanine levels down. Grandpa got to give the first feeding during the trip to P-town.
Lastly, please keep in mind that this is a learning process for Andrea and me as well. Things may be complicated, in a logistic sense, for a while... but we'll get the hang of it. We are very lucky to live in a state that has really good support for conditions like this as not all states do. We are also very lucky to have good supportive family and friends that can help us keep Owen on track. If you have any questions, please ask instead of just letting them fester...
And, lastly... let's wish Owen a happy 3 weeks in this world!
OK... this isn't really a hat. Dad is just getting used to doing the goofy things that dads do so well.
It's amazing what you can do to a sleeping infant.
Well... at least he'll be ready for when he actually gets muscles.
Mom had a follow-up visit today with the wonderful midwife. Grandma dropped off some new outfits... ones that fit a sub 2 week old guy much better than the normal 0-3 months clothes. (They say 0-3, but they really mean 1-3.)
I know it doesn't seem high tech, but really it is. With a little guy that wiggles with the best of them, this Velcro-infused blanket is a real time saver. It's a nice thick fleece that will keep him warm at night, but the real trick is in the special patches of fleece. The Velcro tabs only stick to certain parts of the blanket, making it a very elegant task to wrap someone up rather than a tangled mess of fleece and Velcro.
Today, we took our first trip out on the town. We went to Parkway Medical Supply, Fred Meyer and to Dad's favorite store in town, Fundamental Bike.
Owen was born into a gadget family. This is one that we've found quite helpful. The Itzbeen is a four line count-up timer with settable alarms. So... we never have to guess how long it's been (itzbeen... get it?) since the last feeding or diaper change. It is just a touch of piece of mind... really. And, let's say we don't want to go down the road of Owen sleeping too long at night and getting uber-hungry? Well, we've got the bottle button set to beep if it reaches 4 hours. Now, that helps keep Owen happy.
Max and Tucker are really honorary uncles... we could have dubbed them cousins just as easily.
Owen's first Duck game... didn't go so well. So far as a Duck fan, Owen is O and 1. Maybe that's fitting for a guy named Owen rooting for Oregon. Shoot... we should have thought of that.
Owen's (great!) Aunt Karen sent this outfit in a while ago... and it's one of the best fitting outfits in the wardrobe.
Right after he was born, they told us that he'd peel over his whole body. They weren't kidding. I've seen snakes that shed less skin than Owen.
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