You guys were so great yesterday with my lopro bread post - thank you so much for all the sincere "ohs" and "ahs!" Even though I pretty much guilted you in to offering them up, I truly appreciate the sentiment - really. really.
A lot of y'all were curious about what constitutes PKU management.
It's a lot.
And quite frankly, I imagine it's pretty stinkin boring for general public consumption.
That is where my friend Michelle (at Daily Grind Gone Mad) steps in. She could make a colonoscopy sound like a day at the spa. Enjoy...
She mentions that Katy's allotment of protein per day is 5 1/2 grams. Youngest may have 7 - whooppeee!
The one thing she doesn't cover is the testing. We have to prick Youngest's finger every other week (as do most PKUers - once you get older it's about once a month. Newborns have to do it twice a week. Yes, that was fun.) , collect a few drops of blood on a testing sheet, send it off to the state. We then get results in a couple of days. As long as we stay between 2 and 4 on his blood Phe level, he'll thrive like every other "typical" kid.
Honestly, every single day I thank the Lord above that PKU is our issue. Especially in light of all the recent goings on in the blogosphere. PKU is a hassle. Sometimes it's a major pain in the ass. But it's doable.
Thank God for modern medicine and Newborn Screening.
If you have any questions, please do not hesitate to ask.
Unless it's about dairy or fish.
(aunt) Becky From The Block
48 minutes ago
41 comments:
I watched the video and was surprised to find, that YES it was funny!
Michelle is funny. Thanks for posting that. It was very informative. Im sorry your little one has to have this....and I can imagine it makes thinks rough for you. {{{HUGS}}}
Loved the video.
I am simply impressed by anyone who can make their own bread, but NOW you really have my respect!
Oh I love them and thanks :)
OMG that was so GREAT! And really, we all nonPKUers are idiots when it comes to diet. Kudos to you and other PKU moms who have that added duty. Y'all are heroes in my book!!!
Holy Cow! You are hysterically funny!!! You should make your own videos! Wait a minute. Really, I have not been blessed with the gift of humor but I can appreciate it. It must be what gets you through the tough days. Thanks for making me laugh alot today and also have a new appreciation for stupid ppj sandwiches .... does peanut butter have protein?? Wait stupid question :)
Ok stupid me... I just realized this isn't you in the video. But you have a child with PKU. Took me a minute Duh. Anyway thanks so much for welcoming me to SITS and visiting my blog. Have a great day!!
What if it's about dairy AND fish?
hehe! thanks for the props. Fame and fortune- here we come! Maybe then PKU food will be more affordable for us.
Thank you so much for posting this! I feel so well educated now. Oh and LOVE Michelle, she is awesome.
she is so cute... i started watching her other videos and i stumbled upon one where she's speaking spanish with a frog (or something).
so the video did clear up a lot, but also caused me to have a few follow up questions... what happens IF they get too much protein? is the effect instant or does it just kind of silently do damage?
That video was funny and informative at the same time. THAT takes talent.
I knew the boys got tested for this as babies but didn't know what it was. Thanks for this.
What she says about people not knowing what is in their food is SOOOO true. Sad but true.
She could give Bill Nye the Science Guy a run for his money!
Thanks for posting - even though I have three kids who were all tested, I really didn't know what PKU is.
The Fruity pebbles was hillarious - i don't know how many times i tell people that if the woman in front of me picks up a product and puts it back in disgust that i pick it up and my boys can probably have it - no nutricianal value - that is what we are (too often) looking for!
Thanks for sharing Em and Michelle!
Oh, and let us not forget soy - no soy either - I live in a very "granola" area - lots of vegans eating soy substitutes.
Love this post! Our LastSon was first diagnosed with PKU after his birth and then re-tested to find that it was just the anti-biotics, fever, and other issues... All these health problems present us with a different take on life! (to say the least!)
Love the video and your brave take on a personal issue. ((Hugs))
With your amazing attitude, I know he will be fine!
thanks for the lesson about PKU-
and here I was thinking the bread was just for the eating!
Holy mackerel...three kids, three PKU tests, and I never knew what the heck PKU was. Learned something new, today...thanks! My brain needed that!
And I admire you for how positive you are about it---I'm sure you've had your "Why me? Why US??" days, but I really like your attitude of 'it is what it is' and thank goodness it isn't something worse.
Well, thank God for...er... something...
She is really a funny gal!
You are awesome! Thanks for sharing your personal journey. I was not aware of this condition prior to reading your blog today. Thanks for expanding my world a little bit :)
And thanks as well for stopping by to welcome me to SiTS, too!!
i have ALWAYS wondered about that message on the back of the package of yogurts! this was informative.
thanks for sharing. i am sorry you all have to go through this!
Thanks for sharing that! A friend of mine's child was recently diagnosed with PKU and I am sending her this way! So funny, but super informative! Loved it!
My friend told me that food is very expensive, etc.. (and the bread looks delicious!)
Grrrrr the video wasn't working for me...dang computer. But I love your attitude about this. It sounds like a pain...but like you said it could be so much worse.
Wow! I'm speechless after the video. But now fully aware of the protein content of Fruity Pebbles.
Holy moly, that's a lot of work! Very interesting. I knew nothing about this, although I had heard of it.
Glad it can be managed! Thank god for modern medicine!
Sounds like you have all this totally under control. BUt you have to now dont you? I love the special bread from below too. I bake all winter then when it gets hot I cant really use my oven anymore since it broils my entire tiny house. :(
BTW: Thanks so much for stopping by the other day!
I have to admit, I almost didn't bother watching the video because I am a physician and already know what PKU is. It was awesome! It also taught me alot about what families go through who are dealing with this. Thanks for showing me the other, and sometimes more important, side of the disease.
Jeans? No, GENES! Fruity Pebbles is Low In Protein!!!!!! Bon Apetit! Michelle has a gift...and now I feel informed...which is always a good thing. Thanks!
DAGNAMMIT! I got a big ol woody because I thought that was you in the video.
Can't wait to meet you at the Bloggie meet up, and by meet you I mean spy on you through some strategically placed spies.
Oh my heck I totally love her. I watched her video last week and it CRACKED me up! What a nut!
I can't believe I watched that entire video.
Usually my Youtube attention span is 3 minutes. That was over double that allotted span :)
I love her accent. I just have to point that out.
Also I'm not nearly responsible enough to do half the shit you guys do for your PKU children. I'm in awe.
I wasn't nearly interested when I started the video--but I have to say she does a VERY good job keeping the interest and making it funny.
Thanks for the post!
loved the video. more power to all of you dealing with PKU...
That video was awesome! My favorite part was the stupid question bit at the end... I get lots of stupid questions about Graham and it drives me completely insane...
Loved the video. Very informative and loved the way she explained it. So sorry you and your little one have to deal with this! I had no idea just how much you have to go through, just to feel your child.
Great video! It really did explain it very well. . . Question? Does your entire family change your diet for your son, or does he eat different meals than the rest of you?
Hey there fellow Welcomista! That was a FUNNY video. My ex has PKU though he doesn't manage it well. I think that explains a lot lol.
Hey there fellow Welcomista, I came by today to give your google ads some clicky love (which I did), but Michelle's video caught my eye, and I had to watch it AGAIN lol. Now I'm sitting in my computer chair singing Phenyl- Keto - Nuria, Phenyl - Keto - Nuria!
It's been a long night lol.
Holy moly - this is random! I linked to your blog from Life of Sass (Congrats on being Sassified, ma'am!) and imagine my surprise (PLEASANT surprise that is) when I saw a post on PKU! My niece/goddaughter has PKU - she's 9 years old and we're very close, and yep, it is a pain in the butt to manage and find interesting recipes that are delish, and it is sometimes tough finding ways to make her feel like she's not left out at family events and dinners because she has "her" food. Her gram is the primary breadmaker, and I do all cookies/cakes/tasty treats, and totally feel the pain of begging for compliments on the results! Hahaha
I can't wait to plow through some more of your posts for ideas, and to find other bloggers affected by PKU!
Sorry for the long comment, obviously I was just real excited - I see why Sass loves you, by the by!!
Hi there! I'm an adult with pku, and I was just bloggin' around looking for some new friends. :) Your loaf of bread looks great! Just a tip though- don't be surprised if it gets kind of hard and crumbly after a few days. Lopro bread always does that. Oh, and it molds fast, so you might wanna keep it in the 'fridge. I love my lopro bread (my mom still makes it since I don't have a bread machine...plus I'm a momma's girl!) and I usually toast it before making a sandwich. It helps alleviate the dryness. :) It was good to "meet" you!
Oh yeah, and my email is Annaboo728@aol.com. If you email me, be sure to put something in the subject line or you might get sent to the spam folder!
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