It's #giveRARE #day - please support #newbornscreening {@screenbabies} today

NOTE: March 3rd, 2015 was the first "Give Rare" fundraiser event - I support newborn screening and the Save Babies Through Screening Foundation; the link in this post has been updated to the SBTS donation page.  Thank you!

Today is the first ever Rare disease giving day and this is an event near to my heart; both of our children have a rare disorder called Classic Galactosemia.  Statistically it effects about 1:60,000 newborns in the United States.  Galactosemia is detected through newborn screening and without early detection it can be fatal to the infant or lead to severe complications.  Alena most likely would not have survived E.Coli Mengengitis if her newborn screen would not have come back in time.

Our happy and healthy girls

Newborn screening saved her life and MiaRosie's life -> read our story here;  Jake and Owen's story tells about what happens without early detection.

As a newborn screening advocate I support the Save Babies Through Screening Foundation; an organization whose mission is to save babies by working to prevent disabilities and death resulting from disorders detectable through newbornscreening.  Would you please join me in supporting this great organization?

What is it about…and my favorite appetizers {#Galactosemia #Newbornscreening #dairfree #recipes}

Lately I have been thinking quite a bit about my little blog, where it's headed, and well also its purpose. Let me back up a little - yeeeeeesss people please just let me do it ;) ~  this blog, albeit under its old name Galactosemia in PDX, has been in existence since 2008.  I started blogging - upon dissolution of Galactosemia Support Northwest -  to share our journey;  talk about what it is like to raise children with a rare metabolic disorder and dietary restrictions in a positive way; plus life in general.   At the time Alena was 4 years old and Mia Rose not quite 2 years old; you can say we have learned a lot along the way.

One of the biggest reasons why I want to share our story and life is to give hope to all those with babies newly diagnosed with Classic Galactosemia.  It will be okay - really, believe me.  At first one is not able to see the forest through all the trees but once one comes to grips with the disorder it will be okay.  Sure there are challenges along the road, but heck everyone faces those in one way or another.  Show me the parent that does not worry about their child.  Now why did I start all of this,  I need to take you back to the time when Alena was fighting for her life.  When we had no clue, no idea, had never heard of such a disorder as Classic Galactosemia.  I remember sitting at the computer the NICU at Emmanuel Hospital provided to the parents (remember this is 11 years ago) searching the internet, hoping to find pictures, and stories of parents raising children with Classic Galactosemia.  All I wanted to know is what is their life like and yes - selfishly - what do kids with this disorder look like, what do they do, what will life be like.  Really, we had no idea and the information we found only presented worst case scenario.  So I hope that my little blog can provide hope, give strength to those newly diagnosed, those affected by Classic Galactosemia, be positive, and happy.

In our journey I soon came to understand that our little family would not be what it is today without Newborn Screening and shared our story.  You can say that I am an advocate for newborn screening because - this is not just sappy talk - without it Alena would not have survived.  MiaRose is our second born, so we already knew that there is a 1:4 chance for her to also be affected.  So, yes my other purpose to raise awareness for newborn screening, share our story, those of others saved by newborn screening in hopes that you all will learn about this life saving test and share it. And yes, advocate that all countries - such as the UK - to include testing for Classic Galactosemia in their newborn screening; please read Jake & Owen's story

Now, rightfully so you may ask what on earth does any of this have to do with food?  I am here to read about fooooood….. Good question!  Those affected by Classic Galactosemia lack an enzyme to metabolize galactose (a long milk sugar) into glucose and as such is a toxin for the body.  The only treatment for this disorder is through diet = food.  In infancy babies canNOT be breastfed but need soy, or other galactosefree formula; thereafter it is through regular diet.  The diet has changed a lot over the years, but no worries I will not go into this here but since diet = food this is where the food piece comes in.  Yes,  I love to cook and it was a steep learning curve but here we are 11 years later and to me it is second nature.  So the other purpose is to share our recipes.  All are 100% (ga)lactose free, most are dairy free (not all since aged cheeses such as Emmenthal, Gruyere etc. are "safe"),  some vegetarian and some vegan.  So yes,  the majority of the blog is about food and I hope to share with you all delicious recipes in hopes that you like them as much as we do.

Okay - now I talked a lot so here are some of our favorite appetizers that you can still pull off for New Years Eve.  Thank you so much for reading.
Smoked Sockeye Salmon Salad
Pineapple Salsa
Pinenut stuffed dates
Fleischkuechle (Swabian Mini Meatballs}
Lemon Sorbet in Prosecco

The year 2013 - Review, Thanks, Thoughts

Here it is the recap of 2013; a post that I have written many times over in my head but for some reason my thoughts did not transfer into a post.  Now why not?!  Okay - not funny I get it and really is anyone really interested in my 2013 recap?! Well, for one I just need it get it out of my head because otherwise it will languish there forever...just like many other posts that were never written this year;  posts that were perfectly scripted in my head and I just never typed out.  The good news is, well they are still in there and a New Year is coming.  Right?!  Who says that I cannot write those posts in 2014?  That is right, because this is my little blog...remember just like "It's my party and I cry if I want to" just rephrase it to "It's my blog and I write if I want to".  Oh, to those of you that do not know me in person I have this...well, let me call it for lack of other term gift, okay in a way it is a gift.  Now what?!  A gift - what on earth - alright I will not keep you in suspense any longer and will share with you what it is.  Well - this sounds odd - songs will pop into my head out of no where.  Really, there are certain phrases and then it happens like just now.  Aren't you glad you know this little tidbit about me now?!  I know, it is just what you always wanted to know...

Now I have gotten completely off track - 2013 the year in review;  let me focus on what I promised.  This year has been a really, really good year.  Our children as well as the rest of the family is healthy.  I am now the mother of a 10 year old and a 7 year old; Alena graduated from 3rd to 4th grade and Mia Rose graduated from 1st to 2nd grade.  That is hard to believe - were they not just in preschool?   I continue to be an avid advocate for Newborn Screening, and Alena and Mia Rosie's newborn screening story was featured in the Oregonian, and by APHL to celebrate the 50 year Anniversary of Newborn Screening.  Alena's story was featured in the Milwaukee Journal Sentinel and included in an outstanding investigative report shedding light on the terrible practice of batching Newborn Screening tests at the hospital before sending them on to the State Lab. See, some hospitals wait for a couple of days before sending the tests to the labs, some labs are closed on the weekends, and sadly the result comes back too late for some of the babies.  Galactosemia is just one of those conditions that need an immediate response and this article made me realize again just how lucky we are.   Newborn Screening saves lives, and it is so important that all expecting parents learn as much as they can about the test before their baby is delivered. My last tidbit on newborn screening advocacy is that I have been appointed to serve a two year term on the Oregon State Newborn Screening Advisory Committee.

My little blog has continued to grow and 2013 was the year I changed the name from "Galactosemia in Portland" to "The Not So Cheesy Kitchen".  Truth be said, a) how many people know what Galactosemia is, and b) I have been concentrating a lot on the treatment i.e. the foods we eat :) a.k.a. Food Blog.  Now some thanks are in order to Ron, as well as our dear friends Larissa and Martin who helped come up with "The Not So Cheesy Kitchen" name of the blog.  Talking about my blog thank you Heather {a.k.a. Girlichef} for all the help and friendship. Oh, and yes I should mention that the girls are so used of me taking pictures of their dishes, them eating, them helping in the kitchen... I overheard Alena explain to her friend "my Mom takes pictures of all the foods we eat"...So thank you, girlies!

2013 also marked that year that I finally got back into running.  Yes, that is right after a almost 15 year break and with many failed attempts to get back into running I have finally made it.  I started back in May of this year and have not fallen off the "track".  Thank you to my dear friend Denise for coming up with a plan, is encouraging me and of course to Ron who makes sure that I make it out the door :).  Yes, I am slow but it clears my mind, lifts my mood...

This year was also the year we took a family vacation in Alto Adige {Northern Italy} after spending time in my hometown of Tuttlingen, Germany.  Danke, Mama :)  Talking about visits and vacations, we tried out snow shoeing {the girls were not fans}, discovered cross country skiing and took a couple of trips out to Sunriver, Oregon.  Then of course there was the surprise visit by my sister Kati...and yes,  it is hard living this far away from family.

Are any of you still here? Or did I loose you all by this long post?  Well, let me say this there are so many more people I should thank.  So I say Thank you to all of you...to every single one of you reading this.  I appreciate all of you.

Wishing all of you a Happy, Healthy, and Successful 2014.  May all your wishes for the New Year come true.  Cheers!!!

#Newbornscreening is near and dear to my heart

Yes,  I write about this topic sometimes.  Are you tired of it?  If you want to stop reading, go ahead but  please tell all your friends and family who are looking to welcome a baby into their lives about this test.  Some people call it the PKU test {for the metabolic disorder PKU}, others call it the "heel prick" but it's official name is Newbornscreening.  This topic is not about whether you agree with me or not. It is not about whether you like me or not. This is about saving the lives of babies.  Plain and simple!

Newbornscreening tests infants born in all 50 States for a wide array of disorders that if not caught in timely manner can end up debilitating, or deadly.  Not every State tests for the same disorders, so it is very important to know before the baby arrives what exactly is tested and if maybe an additional screen should be considered.  The Screen Babies Foundation - an all volunteer organization of Mom's who have been touched by newbornscreening - has valuable information.  Find answers to your questions, and find out what disorders your state tests...

So just in case you do not know,  I am so passionate about Newbornscreening because both of our children are healthy today only because of the Newbornscreen.  I did not know about the test before Alena our oldest daughter was born.  But then again I also had never heard about Classic Galactosemia, the metabolic disorder both of our children have.  Click on this link to read our story.  We have two happy stories, there are more happy stories such as Nikki's, Damian's, Alex's  and many more. But unfortunately there is a long number of stories that did not have to end so sad.

Read Cora's story - Pulse Ox Screening could have saved her
Alexis could have been saved if newbornscreening had detected her MCADD
Ben could have been saved if his MCADD would have been detected by Newbornscreening

Read more family stories here

September #NewbornScreening Awareness Month and its back to school :)

Yup, and you may wonder what do the two have in common? They have everything in common and are both closely related to one another.  How so?  If you have read my blog before, or know me then I am sure you know the answer, right?!  But just in case you do not know the answer I will let you know...

Both of my - our - children have a rare metabolic disorder called Classic Galactosemia.  Classic Galactosemia is one of the disorders detected at the newborn screening test {some people refer to it as the "heel prick", or "PKU Test"}.  It is one of those disorders {like all of the ones on the newbornscreening test} that can have very adverse results if not detected. We are one of the lucky families.  Our oldest daughter was diagnosed "just in time".  Yes, she still became very, very ill but Alena survived, and  is a thriving, healthy girl.  Without newborn screening, Alena most likely would not have survived.  It is simple as that - and you know, the same holds true for our second daughter.  Yes, she never got ill but only because she was a) never exposed to breast, or any other kind of milk containing galactose, and b) because of her newborn screening result. So can you imagine how dramatically different our - Ron's and mine - word would be without newborn screening?  Please click on the link, if you would like to read our story

So when I look at our children, I am forever grateful for the test that saved their lives.  I am constantly reminded of this.  Today, as the girls and I spent our last lazy summer day together it was a constant reminder.  We are lucky beyond belief that we get to see our children grow, and be excited with both of them to be going back to school tomorrow

Please tell all your family and friends who are expecting babies about the test that saved my girls.  You can learn about it it from the Save Babies Through Screening Foundation, and by watching this fantastic video.

Take a look at our silly girls, and cat :)