Sunday, December 30, 2007

Mobile Snooze

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After several failed attempts, Owen finally took a nap while swinging. And... it was a long nap through house cleaning noises, including vacuums, and lots of other milling around. So, it turns out, Cherie (the midwife) just might be right. A swing might be the best way to be able to get some things done.
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Saturday, December 29, 2007

4 Generations

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Here's 4 generations of Kruses. From first born to last born is Don, Denny, Evan and Owen. Respectively, professions are Farmer, Real Estate Agent, Online Product Manager, and Eater.
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Tuesday, December 25, 2007

Santa who?

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Owen says: Who is this Santa guy? He brought me WHAT? Sweet!

Thanks to all who helped make Owen's first Christmas a great one.
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Thanks Gail!

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Great Aunt Gail sent Owen this beautiful quilt for Christmas. It is absolutely beautiful! Thanks Gail!
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Monday, December 24, 2007

Gr-Owen Update: December 24th

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Owen is now officially three days short of seven weeks old. Compare this to the photo on top of the right hand column and see how far he's come. At this rate, he'll be driving in about 4 more weeks. Maybe a few more... we don't want to put undue pressure on the guy.
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Me and Frosty...

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Owen says: We took a nap together. Though you'd think he's really cold, he made a good snuggle partner. Merry Christmas Eve, everyone. My recommendation to all is that you give yourself the gift of an extra nap this year.
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Sunday, December 23, 2007

Hey Gwiff............

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Owen says: I'm waiting... or, should it be Wii're waiting. This thing? It's really fun, almost as fun as a 6 week old guy.
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Visitor!

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It's Great Aunt Karen! There will be lots of visiting over the next few days... oh, the holidays!
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For No Reason: Part 1

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I know we've posted a few 'for no reason' photos in the past, but we'll try to officially keep them as a series now. I noticed that the light in the kitchen here at Grandma and Grandpa's house was falling quite nicely on Owen's face, so I shot away. Enjoy!
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Three naps for the price of one!

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Grandma, Owen and Tucker took a midday snooze. How all three fit in the one chair, we'll never know.
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Shhh... don't bother me

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Partying all night is a tough job. While most people require a set number of 'beauty sleep' hours a day, Owen requires a few 'cute sleep' hours to be able to melt hearts at the rate he does.
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OK Gwiff... here it is!

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I think Wii need some play time! Wii are looking forward to yous guys coming back... Owen demands a Wii boxing match against the family heavyweight champion, Griff 'The Unclenator' Kruse...
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Saturday, December 22, 2007

hey uncle gwiff!

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Watch later for some big news!

-O

Friday, December 21, 2007

I'm thinking so hard...

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... I fell asleep!
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Latest PKU News

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There are a few developments on Owen's PKU front. Up until earlier this week, Owen's phenylalanine (phe) levels had been staying very low. The 'target' range is to keep his phe between 120 and 360, in the units used to measure the chemical's concentration.

The blood test up in Portland was the first test since his cleansing period to give a result that was above the 360 level. It was in the mid 400's.

This was expected. Owen's diet consists of natural milk and Phenex formula, and the Phenex is a fixed amount a day. As Owen's appetite increases, the amount of natural milk fills his need for extra calories, basically reducing the proportion of Phenex he gets in a day.

Now, that's bad, right? Isn't phe the stuff that's bad for Owen? Well, yes... it is. But, the response to this is really quite simple.

Previously, Owen had been receiving 6 ounces of Phenex a day. Now, we give him 8. Theoretically, that's a shift of 4 fluid ounces a day in his diet. The hope is that it brings him back down into the ideal range, and we'll stay at that level until his Phe readings go above the threshold again.

This would be the main reason for the blood tests every 3 days, to have ample opportunities to track phe levels.

So, not a big deal. This is easy to deal with. And, the added benefit, especially during the holidays, is that more Phenex a day means that more Aunts, Grandmas and Grandpas get to feed him with the bottle. And, more chances for Dad too.

That's the current state of the PKU.

Ahhhhh.....

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The good life!
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Wednesday, December 19, 2007

Where's my fruit?

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Well, he doesn't eat fruit yet, but he will... someday he will.
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Tuesday, December 18, 2007

PKU update

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This Monday, Owen, mom, dad, grandma... er... mimi and grandpa all took a trip north for Owen's second appointment at Dorenbecher, which is only the second of a regular, probably monthly, visit schedule. This was my (dad's) first visit up to the clinic as the first visit was obstructed by a business trip to Reno.

So, everyone is probably wondering how things are going on the PKU front. The short answer: great! The long answer... well, the long answer is that his phenylalanine levels have constantly been under the upper limit for a 'successful diet' up till now. Right now, we have Owen on a fixed amount of the special formula a day, so as he grows and pulls in more calories, they are coming from the source that does contain phenylalanine... so his levels are expected to rise, but we're not quite to the point yet where we need to adjust the diet to compensate. That'll probably happen soon... but not yet.

The good news from the visit to the clinic is that Owen's weight is in double digits! He tipped the scales at 10 pounds 1 ounce, so he's growing quite well. Dr. Amber (Owen's doctor in Roseburg) said they like to see one ounce per day for healthy growth... and he's been tracking at one and a half for 3 weeks. He's not only growing rounder... but taller too. He's right at 22 inches now. So, at this rate, by the time he's 30, he'll be 15 feet tall and 720 pounds. Well, maybe not. And, please don't check my math there. I think it's close... but I beg the accountants in the family not to try and verify those calculations.

So, back to the PKU stuff. A few things that came up at the meeting with the dietitians: The big thing that's been discussed in the PKU world is Kuvan, a pharmacutical that was just approved last week by the FDA for treatment of PKU. The main thing that everyone needs to know about this is that it does not 'fix' PKU, but instead it just helps those who are on a low-protein diet keep the phenylalanine levels down, which is the goal of a low-pro diet in the first place. But, if anyone tells you that there now exists a pill to fix PKU, they are mistaken. We don't know yet if Owen will get to use Kuvan at all. He'll have to wait at least until he's 4 years old as that's the age that they've approved Kuvan's use for. So... time will tell on the drug front. And, who knows... there might be more developments in the pharmacutical front sometime down the road. But, for now... we've got the time tested low-pro diet as Owen's best plan of attack.

Another thing that people need to know about Owen's PKU treatment is that he is getting top-notch care. Stacey and Kathleen, along with the rest of the metabolic clinic staff, are absolutely top tier. Talking to them during the visit, it quickly becomes apparent that they are not only well versed in the care of PKU kids, both from the metabolic standpoint (the technical aspects) as well as the social parts (which will come in later once Owen starts melding his thoughts in with the rest of the community members born in 2007.) but also well versed in becoming a kid's good friend. They really offer a full person approach to making sure the pieces are in place to allow for normal (or, possibly beyond normal) development.

So, this brings everything to how we're going to approach PKU from here on out. PKU, technically, is a metabolic condition caused by an enzyme that is not functioning normally. Even so, it is really just a thing. There are many things that can cause someone to have a special diet. Some people have political reasons that keep them from eating certain foods. Some people have religious reasons. Some people just can't get through the thought of eating green things or mushy things or things that are fungi or things that aren't cooked. Heck, some people don't eat things that are cooked. So, there are many different things that are great reasons that cause someone to have a special diet, and PKU is just one of them. There are far tougher battles that so many young people in our state fight on a daily basis than something that restricts a little guy to a specialized diet. It may seem like an extremely restrictive diet, but a diet is just a thing. And, a diet is just a small part of who someone is. Unless you're Emeril Lagasse or Jamie Oliver. Or Rachael Ray. And, this thing? We can handle it.

This trip up to OHSU was a good one. It looks like Owen is probably one of 5 kids born in Oregon this year with PKU. It also looks like we're part of a community now that lives wonderful lives with the low-pro diets and the specialized foods and the frequent blood tests. There won't be any restrictions on Owen being able to partake in Dad's outdoor adventures or Mom's worldly travels. We'll just have to do a bit of meal planning. That's all.

Let this be a warning to any of you who might be getting some hands on time with Owen over the next weekend... he's no lightweight anymore. You're going to have to bring your A game.
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Friday, December 14, 2007

Over fl-Owen

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Uh-oh... We think Owen ate too much! What do you think?
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Welcome home Dad!

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Dad came home from work, and this guy was waiting for him with all smiles. Coming home from work has never been so fun!
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Thursday, December 13, 2007

Going and gone...

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Grandma and Aunt Jen came over tonight to give us a night out on the town. We had Mexican food! Anyway... when we got back, Owen was on his way out and finally landed in the boppy. Sweet dreams, little guy...
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Gr-Owen Update: December 13

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He's filling out quite a bit... and beginning to get heavy. I guess he couldn't stay pocket-sized forever...
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Wednesday, December 12, 2007

Shhhhhh.....

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Owen's got a pretty good gig with the boppy. He's getting pretty good at sleeping in all different positions.
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Sunday, December 9, 2007

Hold your head up!

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The tummy-time has been paying off. Owen is holding his head up enough on his own to use the BabyBjorn carrier without the neck support. Not only does he get a much better view of the world, but the photo opportunities skyrocket! Rock that BabyBjorn, Owen. Rock it!
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PKU update

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So, it's been a more than a few weeks now of living with PKU. We'll try to fill you in a bit on what we've learned.

A few basic pieces of terminology:

Phenylalenine: This is the amino acid that Owen lacks the enzyme to process normally. It is one of the basic building blocks for protein. Learn all about it here. You may hear us just call it 'Phe' (pronounced 'fee')

Phenex-1: This is the formula supplement that Owen gets daily. It is a special product that is phenylalenine free, but helps to meet the rest of his dietary needs. It is crucial that we always have access to a sufficient supply of Phenex. Apparently, 'Phenex' is also the name of a demon in some sort of mythology. If we're talking about Phenex, we're not talking about a demon, we promise.

Tyrosine: This is another amino acid, which would be a byproduct of phenylalenine in a normal metabolic process. In Owen's case, he gets his Tyrosine from the Phenex.

Medical Foods: You may hear us talking about 'medical foods' or, 'Phe free' or 'Phe reduced' ingreditents. Basically, all we're talking about is a class of foods that have been altered to contain less or no phenylalenine compared to their 'non-medical' counterparts. Flour, pasta, crackers, jello are just a few examples of some medical foods. The goal of such foods is to allow a more normal diet without exceeding the phe levels that Owen is allowed.

Asparitame: This is an artificial sweetener that most people know as 'Nutra-Sweet.' One of the main ingredients of this is phenylalenine, so this is completely off limits. Give him the real stuff! If you notice on a can of Diet Pepsi, under the ingredients list, there will be a warning about Phe, just for folks like Owen. I'd bet you don't have a warning on any Pepsi cans especially for you!

So, enough with the dry information. The reality is that dealing with PKU at this point is really not that bad. Sure, it's not every kid that gets a blood test every 3 days by pricking a hole in his foot... but Owen isn't the only guy that has to deal with it either. Mom and Dad did the first unassisted blood test last week, and we would have to estimate the 'cry time' at well under one minute.

Also, the daily bottle of Phenex is, in a way, nice. It is giving Dad a few more opportunities to feed Owen, which some dads don't get a lot of chances to experience. Some people were concerned about nipple confusion when introducing Owen to a bottle so early while still feeding natural milk, but he seems to be just fine. The only real issue is that he eats a lot... A LOT!

Our next appointment at the metabolic clinic at OHSU is coming up soon. We'll share more after we get the results from the experts...

Ready to roll...

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Owen is getting used to his carrier. It requires a bit of neck strength on his part to use it without his head acting like a pinball... We're gettin' there.
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6 critters - 1 couch

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It's usually not that easy to fit six bodies on a couch... but when three of them are the compact variety, it's easy!
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Saturday, December 8, 2007

Oh really?

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It's time to eat? AGAIN?!?!
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