Camping in the Columbia River Gorge at Memaloose {#Travel #Oregon #GoCamping #Food Family #Fun}

How can it be that it is already June 10th - another few posts are still locked up in my head and there has been zero output on this blog lately.  Yes, shame of me…time keeps just on rolling by…so now no more fretting from me…

Summer is here meaning the tent camping season is now fully open {for us} -  we kicked off the season with a two night stay at Memaloose Oregon State Park; actually the same campground we kicked the season off for a few years now.  Memaloose State Park is in the Columbia River Gorge just past Mosier and few miles west of The Dalles; this is the place - at least we think so - where the lush green changes over to a more desert feel.  The mighty Columbia is just below the campground and Rowena Crest rises high above;  Memaloose is located where the gorge is super narrow.  The train line is below the campground separating the river from the park; I-84 runs right above campground and Rowena Crest towers above.  Yes,  it is loud - there is the highway, trains all times of day and night, and - since this is the Columbia River Gorge - one the premier wind/kite surfing places around the world super, duper windy.  WE - for some odd reason - love to kick off the season here.  It is always a lot warmer, and drier than Portland plus there is a lot to do.

We love hiking up Rowena Crest, or the Tom McCall Preserve but since I hurt my foot {hello Plantar Faciatis} a hike was not in the cards.  Let's just say that MiaRose was slightly excited about that fact.  Instead of the hike we headed to the Washington side in the gorge, tasted some wine,  went to an awesome museum and visited Stonehenge.  More about that tomorrow, or soon thereafter...

Roasted Marshmallows and s'mores by the campfire

Other things to do include biking, wind/kite surfing, hiking, more wine tasting, visit the the Columbia Gorge Discovery Center, taste fantastic beers at Full Sail and/or Double Mountain in Hood River…

Oh yes and finally figured out how to improve our camping fare; parboil.  I obviously did not invent the idea but how on earth did it take me so long to think of it?  We finally had great food - perfectly roasted corn on the cobb {parboiled at home before packing} plus potatoes, bacon, and eggs for breakfast - I parboiled the potatoes and they came out fantastic….

Good to know before you camp at Memaloose

• It is loud - there is no way of sugar coating it; trains run throughout the night, and so does the traffic on the highway
• It is windy and the wind can be really gusty; so if you are tenting be prepared to anchor it down
• It is dry and hot
• and yes,  despite it all we love it , but it is not for everyone - so if you are looking for a quaint spot to camp this is not it…
• Great Junior Ranger program in the summer

Slow Cooker Black Eyed Peas {#dairyfree} & Cross Country Skiing at Teacup {#MtHood #Oregon}

Happy New Year, friends!  Does it still count?  Did you have a good start into the New Year?  We certainly did - all chill just the four of us having Raclette, sparkling apple juice for the ladies and other sparkling for the adult units,  an eating break of firecrackers with friends, more Raclette, plus dessert…So who it to midnight?  Well, ahm it is time yet once again to show my true colors friends.  I have not made it to midnight in ions.  Yes,  I kid you not…it just has not happened I fall asleep.  So again all of us were soundly asleep by 10:30pm and woke up in 2015.  But hey,  it was already 2015 in Europe and on the east coast so technically we made it :)

New Years Day was spent lazily around the house but on the third day of 2015 we finally moved.  Yes,  the girls started their Cross Country Ski Lessons at Teacup Nordic up on Mt. Hood with perfect snow and weather.  Yay -  finally a full winter skiing season is ahead of us; let's just say that the entire family is excited.  The girls love their class, and the adults get to spend time on skis outdoors as well.  Winters past I have always regretted not spending enough time in the snow, especially since it is so close…right?!  We can be up at Teacup in a little over an hour so yes,  we have to take advantage of it. Can you tell that I am excited about this?  And I am even more, as in much more excited, that both girls love to cross country ski including our not so excited hiker, MiaRose :) her favorite part is - can you guess it - is my least favorite part and that is going downhill on the trails…

Now what does any of this have to do with Black Eyed Peas aka Hopping John?  It is a New Year and usually we eat Hopping John on New Years Day but it did not happen this year.  So on Saturday in the morning before we headed up to Mt. Hood at 8 am I threw (almost) everything into the slow cooker anticipating a hot meal on our return from the mountain…let's say I was a little nervous but by the time we arrived back home dinner was almost ready plus the house smelled absolutely delicious.  Yay!!! - We put on the rice and ate within the hour...

Slow Cooker Black Eyed Peas

• 2 C Black Eyed Peas, soaked over night
• 5-6 C water 
• 1  medium sized ham hock
• 1 Tb Olive Oil
• 1 medium onion, chopped
• 2 medium carrots, cleaned and chopped
• 1 red pepper, chopped  
• 1 green pepper, chopped
• 2 tsp paprika
• 1 Bayleaf
• Salt, pepper, optional -> cayenne, hot sauce to taste

1. Place drained, soaked black eyed peas in your slow cooker
2. Place ham hock on top of the black eyed peas - press down
3. Heat up olive oil in a sauté pan and quickly sauté the vegetables together with paprika until onions turn translucent.
4. Pour vegetables over the black eyed peas and mix under them
5. Place bay leaf on top
6. Pour water over the black eyed peas until they are completely covered {the ham hock will still stick out}
7. Cover.  Cook on low heat for 6 hours and have fun
8. Upon your return, remove ham hock from black eyed peas and add salt, pepper and/or optional flavors to taste.
9. Serve on a bed of rice.

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

Germerican Christmas as in Merry Christmas, Frohes Fest & Food Traditions...

This year we celebrated another Germerican Christmas;  German, our own, and some American traditions are combined and make our Germerican Christmas.  -  I am not a traditionalist,  but this time of year I turn into one.  Yes. it basically starts in with Laternenparade for St. Martin's Day,  the next thing is the advent's wreath,  on December 1st, both girls get a advent's calendar each and St. Nikolaus visits December 6th every year.  Then of course there are the movies we watch.  Elf, Grinch, Lampoon's Family Vacation, Peanut Christmas, Christmas Story, not to forget Love Actually must all be watched before Christmas, the Elf starts visiting, cookies are baked and the rest of the family insists on a tree.  It is not that I do not want a tree but putting it up in early December?  When I grew up my parents decorated the tree and it was not revealed until Christmas Eve when not only saw the tree for the very first time but also the presents.  It was magical…such anticipation; now we get a tree and decorate it together plus we each pick out a new ornament at Santaland each year…

Presents…well, yes there are presents and we hang stockings by our chimney for each person celebrating.  In Germany the Christkind visits and brings present on Christmas Eve; so yes, our girlies are quite spoiled as it just also happens to visit our house after dinner and leaves a few presents.  Santa of course visits at night and we do follow him along on the Norad tracker it's so much fun. Christmas Day is a lazy one, spent unwrapping, trying on, playing and/or reading presents plus it has to involve a long family walk up  Mt.Tabor

Food - yes, there is food; the first few years after Alena was born was quite a steep learning curve as to how to modify recipes, knowing "safe foods" etc.  In the meantime reading labels, knowing which foods are safe, how to modify is second nature and at home no big deal. So what do we eat on Christmas?  Keeping with  German tradition Christmas Eve dinner is simple and it's Fleischkäse (thank you for a great German butcher in Portland) and Potato Salad. For Christmas Day we used to make a goose, potato dumplings, red cabbage but since neither of the girls really like it we have switched it up.  This year was the second in a row that we had Rouladen with Spätzle {scroll all the way down for recipe} served with oven roasted carrots, and red cabbage.  I have to admit that this year I got a jar of Hengstenberg Apfel Rotkraut {red cabbage with apple} and just heated it up; I may just stick to that tradition.

Vanilla Cut-Out {Ausstecherle} & Linzer Cookies {#dairyfree #recipe} plus Winter break fun

Are you ready for the big day? One more day to go and yes,  there is still time for another cookie recipe to be shared and another cookie to be baked.  This is one is super easy plus the dough makes not only super delicious, fun cut-outs, but also - if you want - more Linzer Cookies.  Plus they are easy, and oh so much fun to make with kids.

Yesterday was the first official day of winter break here in PDX; and I can honestly say that we spent it very leisurely.  I am in a holiday mode as in relaxing mode so not in the mood for doing anything along the lines of the zoo, or OMSI.  More like a leisurely walk up Mt. Tabor but - surprise surprise - neither of the girlies felt like walking up Mt. Tabor, not even the playground was enticing.  Dang, and I thought it was such a fantastic idea.  Instead of my stellar idea we drove downtown, met Ron for lunch at Potbelly (the girls order their sandwich without cheese and it is "safe) and afterwards I took the girls to the Pittock Mansion.  Not sure what I was thinking as I still had hopes of taking a nice long walk and  the walk around the mansion was just not enough; however we peeked through windows to see the beautifully dressed rooms, and enjoyed the view.  Okay truth I enjoyed the truth and MiaRose kept saying "this is boring"….HA here you have the plain truth…she thought it was boring.  Yup - and I could not entice either of them to hike down one of the fantastic trails.  Our next stop - the Rose Garden playground; still fun for both girls and then I saw it.  Yes the trail leading up to the Rose Garden and formed my "evil" plan…The girls played for a while and when they were ready to leave showed them the trail.  Oh yes, it worked like a charm - Alena loves walking but MiaRose is not always a fan…but it worked.  Yup,  we took the trail to the Rose Garden and had fun even MiaRose….

Back home it was time to make our cookies to finish up the first day of winter break.  This is my Mom's recipe the only change is that instead of butter we are using vegan butter to make it dairy free.

Vanilla Sugar Cookie Dough

• 1 stick Earth Balance (or other vegan margarine)
• 1 C sugar
• 2 eggs
• 1 vanilla bean scraped out (or 1 tsp vanilla extract)
• 3 C flour
• 2 tsp baking powder

1. Cream together margarine, with eggs, sugar and vanilla until well combined
2. In a separate bowl combine flour with baking powder
3. Slowly add flour to the margarine until everything comes together into a dough
4. Divide dough into two parts and wrap each into plastic wrap.  Place in the fridge for at least 1 hour.

To make the  cut-outs

• Vanilla Sugar Cookie Dough 
• 1 egg yolk plus 1 tsp of water mixed
• sprinkles
• your favorite cut-out shapes

*** prehet oven to 375 F - line baking sheet with parchment paper ***

1. Roll out the dough
2. Cut out cookies and place them on the prepared baking sheet
3. Brush egg yolk over each cookie; decorate them with sprinkles
4. Bake for 8-10 minutes

The Linzer Cookies almost as easy - the only added step is to fill them

Linzer  Vanilla Cookies

• Vanilla Sugar Cookie Dough
• 3 Tb your favorite jam - couple of drops of water
• 1 Tb powered sugar for garnish

*** Preheat oven to 375 F - Line baking sheet with parchment paper ***

1. Roll out half of the dough and using a Linzer cookie cutter - leaving out the insert - cut out the bottom rounds.  Place on a baking sheet and bake for about 8 - 10 minutes
2. While the bottoms are baking cut out the tops by placing the cut-outs inside of the Linzer cookie cutter. Bake tops for about 8 - 10 minutes
3. While the bottom and tops cool down, stir jam together with a drop or two of water.  
4. When cookies are cooled down spread a layer of jam on the bottom cookie then place the top on it. 
5. Once all cookies are assembled sprinkle with powdered sugar.

Enjoy!

This that life musings - fall adventures - Chocolate-Raspberry Ice "Cream" Birthday cake {#dairyfree}

This fall has been a whirlwind more so than I remember;  well, at least it feels that way.  I truly have felt overwhelmed with too many things on my plate.  Yes,  it is true the perpetual rat race just never seemed to stop leaving me feeling beyond exhausted. You know, when there is not enough time to listen to your family and always being preoccupied with some aspect of work be it volunteer, in my business, or on my blog.  So it was time to reassess things a little bit and take a small step back from blogging.  No,  don't you worry my friends I am not leaving the blogosphere but have decided - at least for the time being - on taking time off on the weekend.  Now that I got this out let me fill you in what has been going on these past several months.  Yes,  it really has been months - true recipes have been posted but adventures took a complete back seat.

Both girls are doing great and it is hard to believe that Alena just turned 11; yes, it seems just like yesterday that she was toddling around and we were learning to adjust our diet.  Let me just tell you that  these parental units have come a long, long way and the journey is incredible…

Alena is in 5th and MiaRose is in 3rd grade and this year both of them joined the Junior Cross Country team.  They ran in three different city wide meets and I think both of them enjoyed it; well, truth be said Alena more so than MiaRose but both and did a great job.

We took a trip to the pumpkin patch in Hood River again this year, and in October Ron treated us to a fun little get away to Timberline Lodge up on Mt. Hood.  We stayed in a bunk bed room - yes,  two bunks total of four beds - the girls swam like fish in the pool, we read by the fire, and just had a wonderful relaxing time.

Halloween came and went with lots of fund as well as plenty of dairy free treats for both girls actually way more than they could eat.

And yes,  Alena turned 11 years old;  she wanted to celebrate at home and we had a little sleep over party for her including the favorite games of Topfschlagen and Musical Chairs.  Oh, and cake of course there was cake - she asked for a chocolate raspberry vanilla ice cream cake.  She asked and I delivered…not to toot my own horn but it really was super yummy and hence zero leftovers…Do you want to hear about the cake?  Yes? Maybe?  Well, let me just tell you.  It's super easy but it does take time.  I usually start about a day before we need it :)

Chocolate Raspberry Ice "Cream" Cake

•  1 box of dairy free Brownie Truffle Baking Mix {I used Trader Joe's}    
•  2 Eggs (according to package)
•  1 stick Earth Balance (Vegan Butter) or Olive Oil
•  1  pint Raspberry Sorbet
•  1 - Quart Vanilla Soy ice "cream" 
•  1 - pack frozen raspberries (for decoration)
•       Dairy free Chocolate sauce (for decoration)

1.  Bake brownie crust according to instructions 
2.  Once the crust has cooled down place a catering, or aluminum foil between the crust and the side of the pan.     
3.  Place raspberry sorbet into the fridge - or out on counter to soften.
4. Once the crust has completely cooled down, spread the softened sorbet over the crust.  Cover with aluminum foil and place into the freezer for at least 2 hours; or until firm. 
5. Soften vanilla ice "cream" and spread it on top of the frozen sorbet.  Cover and return to freezer for at least 2 hours; or until firm. 
6. Decorate the top of the cake with raspberries and chocolate sauce
7. Cover and return to freezer for at least one hour or until firm. 
8. Remove about 30 minutes before serving

Apples and Quick Homemade Chunky Applesauce {#recipe #dairyfree}

The apple extravaganza continues and this Friday after school the girls together with one of Alena's friends went to taste the apples at Applefest.  Yes, we went on Friday right after school and pretty much had the entire tasting section all to ourselves.  Forget the huge lines that form on Saturday and Sunday, Friday 3:30 p.m. is the time to visit.

We tasted every single apple kind there was and I discovered a few new favorites (now if I only kept that sheet - what was I thinking?!) however kept myself in check by not buying a few more pounds…again, what was I thinking when winter comes around and the apple stack in our basement is gone I will cry…because there is nothing like fresh homemade applesauce.  Okay - it won't be that bad because we have at least another 10 jars sitting in the freezer but still…fresh warm applesauce.  It is super quick and comes together with just three ingredients.  Fresh apples,  water, cinnamon - yup that's it.  It does not get any easier than that…

Quick Chunky Applesauce

• - 4 C diced apples {I do not peel my apples}
• - 1/2 C water
• - 1/2 tsp cinnamon

1. In a pan combine apples with water, cinnamon and cover. 
2. Bring heat to medium - high and keep pan covered.
3. Cook covered until apples fall apart and become mushy.  This takes about 15 - 20 minutes.  
4. When all apples have cooked through take the pan off the heat
5. Stir the apples sauce and let it cool down before serving 

Serve along side Potato Pancakes for Himmel & Erde {translates to Heaven & Earth}, for dessert, lunch…

Enjoy!

Visit to Vancouver B.C. {#Canada} #travel explore with #kids

Can you believe that I am still working off our summer?  Yes,  it is true - life has been a little bit of a whirlwind around here.  Everyone is well, but I still have to adjust to the schedule as everything is back in session. You know, school, work, board duties…all of it; ah the leisure of summer seems already so long ago…Perfect time to revisit it so :)

In any case the summer of 2014 was our summer of camping, but also the summer to add a new country to our list.  I have lived in the United States for over twenty years and am embarrassed to admit that this was my very first visit to Canada - ever.  Yes, we are only four hours away from the border and until this year we have just never made it across.   It was about time and since Europe was not on the travel menu this year we certainly had plenty of time.  We headed up north to Vancouver right after our five night camping trip to Orcas, Island.  Sleeping in a clean hotel room with soft beds sounded like the perfect treat after living outside.   It was Ron's idea and he was so right ~ Welcome to  our first visit to Canada…

We stayed in Burnaby at the Hilton which was nice, quiet, with a nice outdoor pool, a quick walk to the train to take us downtown, adjacent to an amazing Asian food mall/market plus with the best Sushi restaurant just around the corner.  True not, downtown but for our first visit was perfect…I love exploring new cities using public transportation….

The first night we found a little Sushi restaurant just down the street from our hotel.  Oh my, the food was so delicious and Alena was in heaven {along with the parental units}.  Yes, she is our fish and sushi lover while Mia Rosie…well,  you know she is a self declared fish hater {yes her words} but loves Miso soup, rice, and vegetable tempura…

We had breakfast at the hotel - which worked great for the adults, but it was not the best solution for our children.  The scrambled eggs, pastries all contained milk - no soy milk so the ladies ended up with a plate of bacon and fruit.  After breakfast we were ready to explore Vancouver and walked to the Skytrain station to take the train downtown.

Let me just say that right there and then I fell in love…yes, you can say that oh my what an amazing city.  The train swiftly took us downtown and we set off on foot to explore.  We walked to Canada Place  checked out the docked cruise ships, got to learn a lot about Canada and both girls got to play on the piano.  Yes, you read that correctly there was a piano there outdoors and ready to be played on.  It is called Keys to the Streets and let's just say that both kids had a great time playing.  Take a look…

From Canada Place we leisure strolled along the Sea Wall watched the planes take off and land in the water, marveled at the yachts and houseboats on our way to Stanley Park. Our destination was the Vancouver Aquarium.

Now let me just tell you that the walk was a really good distance - we took a few breaks, had water on us and got a great snack before heading into the aquarium  And yes,  there were milk free options for the girlies…

Full disclosure, friends.  I am not as NOT usually a great fan of aquariums - really it is just not my thing but holy moly….the Vancouver Aquarium is absolutely mind boggling amazing.  And no, I do not just say that because my children got to participate in a couple of shows.  It really is fantastic.  The layout, the presentations, and let's not forget the 4-D movie theater.  Oh yes…if you go to Vancouver you must visit the aquarium…

Rest assured it was a bus ride back to the train station…after dinner the ladies enjoyed the pool until closing…

The next morning we ventured again downtown and this time we were off to meet my friend Nancy.  I met Nancy who blogs at gotta get baked through SundaySupper; we not only share blogging but Nancy an attorney as well.  It was so wonderful to finally meet her in person;  we all had such a lovely time and - at least I think so - hit it off  as in you know it was not awkward as it sometimes can be when you meet someone for the very first time in person. It was exactly as I imagined…Nancy treated us to an amazing lunch…Thank you so much, my friend :)

After lunch we explored a little more of the city by hanging out at Granville Island before heading back for the ladies nightly swim….

Vancouver we will be back soon….

Orcas Island - camping at Doe Bay {#gocamping} #getoutside #nature #pnw #washington

For years now we have wanted to go up to Doe Bay on Orcas Island.  Well, okay let me rephrase that I have wanted to go to Orcas Island actually ever since I read about Doe Bay.  Yes, I have been dreaming about this place that sounded so magical.  Sitting at a cove right above water it looks absolutely magical plus the resort is complete with a Sauna and hot tubs.  Now, you may not yet know this about me {and Ron} but we love Sauna; and as if not going to Germany would not be already hard enough for me but the thought on missing out on my several weekly trips to the Sauna just added more salt to an already open wound.  So yes,  since this is  was our summer of living outdoors and camping we reserved a walk-in spot at Doe Bay.  How was it?  Oh my - beyond absolutely magnificent; truly a walk in spot but it was basically just us right above the edge of the water.  Sea otters were feasting right by our campsite, the view of the water, the tranquility, the stars…it was such a reward for the seemingly long walk to the site.  Plus have I mentioned the Sauna yet?  Such a magical place - a beautiful big Sauna right behind the sunken hot tubs with views to the bay.  Yes,  we may have spent a couple of hours there every single day…just pure bliss.

Those of us living in the Pacific Northwest surely have all heard about the San Juan Island an archipelago located in the northwest corner of the United States and are part of Washington State.  There are a total of about 400 islands of which 128 or so are named and they lie between the continental coast of Washington and Vancouver Island, British Columbia, Canada.  There is ferry service to four of the islands - San Juan, Lopez, Shaw, and Orcas - from Anacortes, Washington.  The islands are a nature lovers dream…wild life, hiking, sea kayaking…pure bliss; and yes getting there is already part of the fun; I mean who does not like to arrive at their vacation destination by ferry?!
Take a look…

After about an hour on the ferry we arrived at Orcas and drove straight to Doe Bay which is at the other end of the island.  The drive took us through the quaint village of Eastsound as well as through Moran State Park right below Mount Constitution….outdoor heaven, friends. Now can you guess how we spent our days?!  Oh yes,  we hiked…one we went up to Mount Constitution and walked up the last 1.2 Miles on the trail up

An other day we hiked around Mountain Lake

On the rainy day our not so much into hiking Mia Rose went on strike and refused to go on a little hike.  So Alena and I set out on our own on a little hike at Obstruction Pass State Park, yes we did get soaked but were ready for the Sauna and hot tub :)

But what about the kids?  Did they have fun?  YES - I can assure of that, we all made great friends and the kids had lot's and lot's of playtime {as well as s'mores} with their new friends while the adult had lot's of great conversation with our new friends.  Oh, and I almost forgot to mention a few other great things about Doe Bay - not only is it scenic, relaxing but you will also meet the nicest people every plus there are showers, and a guest kitchen with two stoves, two refrigerators plus a dining area.  Perfect for camping on a rainy day…and meeting new friends

All of us caught the same ferry back to the mainland or America as they say on the island when it was time to say good bye….

It is May...

yes, it is true and next thing we know school is out for the summer.  I say it all the time but where does the time go?  It obviously passes by so quickly as I can find more grey hairs on my head, and both girls keep on growing.  To me it is a little like a double edged sword - I love seeing them grow, getting more mature and independent but somewhat on the other side I want them to stay innocent children for as long as possible.  Don't get me wrong…I think {or at least hope}it must be a dilemma many parents face.

All of us have been super busy these last few weeks.  Mia Rose participated in the Talent Show at school dancing with two of her friends to Roar…oh yes,  this Mama is quite proud

Alena on the other hand has been enjoying Girls Inc. and was so inspired that she set up shop in front of our house to sell her handmade Rainbow loom bracelets.  She sold quite a few and no, not just to our friends :)  I watched everything from the inside, as I - bad me - caught myself starting to micro manage her little store…

The parental units have been busy with work; and now I almost forgot - yesterday was the day that both ladies finally got ear rings.  They had talked about it for so long, asked and they just caught Ron at the right time when he promised them "yes, Wednesday after work we will get your ears pierced".  Lucky girls - their Mama was not quite ready yet :)  Anyway we made our way down to the piercing studio, met Ron and now both of our girls have earrings.  Yes, they are super proud…and Daddy scored a lot of points from his girlies…

Things & Red Pepper Corn Chowder #Vegan #Dairyfree

How is everyone?  All is fine here - I just have been in a - for lack of better words - little "lull"; you know just part of life, right?!

Time here seems to just fly by - please tell me that everyone is feeling like this.  How can it already be April? I love spring but at times it all just runs a little too quickly for me; it probably has always been as fast but I never paid as much attention to it.  My hair keeps getting more grey strands and the girlies are growing by - as you say - leaps and bounds.  No longer are they little girlies, but big girls…Wow!!! It is all good and I am certainly not complaining to see our girlies grow into little ladies.  Now please do not tell them that I referred to them as little…especially Mia Rose would be super upset :)

We have had another visit to our metabolic clinic, another blood draw, and Alena - now that she has turned ten - has had her first bone density scan.  Our visit was - as usual - great; the fantastic news is that new guidelines will be coming out allowing a lot more cheeses and casein will be okay. I cannot wait to see them..both of the girls GALT levels were good {YAY} however the Vitamin D was off the chart as in off the chart low :(.  That certainly was not the result we wanted to see but we are boosting Vitamin D with daily drops and another draw next month will {fingers crossed} show increased levels.  

The result of the bone density level was not as expected and it really did throw me for a loop questioning myself…I was so surprised because both girls eat quite a bit of cheese, Alena drinks at least two large glasses of fortified Chocolate Almond Milk everyday, takes a supplement and still the bone density was not were it should be.  The metabolic clinic however told us that they were not surprised since the Vitamin D level is so low.  The good news is that there another ten years to build up Alena's bones.  So boosting Vitamin D, more {soon} cheeses, and running {Ron started to take both girls with him} should bring us there.  Fingers crossed…

Now are you ready to hear about some delicious Red Pepper Corn Chowder?  Courtesy of delicious frozen corn, you are able to bring summer to your table anytime of year now.  I made it on a particular grey, cool, and rainy - albeit spring - day; it certainly brightened everyone's mood plus it is super easy, quick, and satisfying.

Red Pepper Corn Chowder

• 2 Tbs Olive Oil
• 1 onion, diced
• 1 large carrot, cleaned and diced
• 3 celery stalks, diced
• 1 - 2 large red pepper(s), seeds removed and diced
• 4 C diced potatoes  
• 1 bag frozen corn
• 5 C water {or more}
• 1 vegan bullion broth
• 1/2 untreated lemon; zest & juice
• Salt and Pepper to taste
• Green onion diced for garnish

1. Heat olive oil in a large stock pot.  Add onions, carrot, and celery together with a pinch of salt.
2. Sautee until onions begins to turn translucent.
3. Add pepper and sauté for another minute or so.
4. Add potatoes together with the corn and stir it all up for another minute
5. Add water, as well as the bullion cube.  Bring to a slow simmer, and cover.
6. Simmer for about 20 - 25 minutes until potatoes are soft
7. Using a hand blender, puree the soup to desired consistency.  When blending be very careful not to burn yourself as the liquid will splatter.
8. Add lemon zest, together with lemon juice and pepper. Adjust salt to taste.

Garnish with diced green onion; serve with a large side salad and some crusty bread!

Empowerment pays off… {#Galactosemia}

The other day Alena and I were at store to pick up a couple of items.  Alena stayed by the front and this is what she was doing when I got back…

…there were snack samples - really yummy looking ones too - and Alena wanted to try it; so to determine whether she can eat she picked up the package and read the ingredients. It did make this mothership quite proud and it showed to me how empowering our kids has helped them to grow.  They need to understand that not all foods are safe for them, that it is not just Mama & Daddy verifying whether it is safe, but they must do so themselves.  It is so important that our kids learn this - because let's face it they all grow up :)  This is also why I think that they need to learn that not all food at home is "safe"; we have learned this important lesson from our dear friends in Italy and we forever grateful for it.  Karin and Eberhard - the parents of Lisa and Philip - told us, if they do not learn this at home where will they learn?  Yes, so our kids know that there is food in our fridge that is just for us parental units, or those eating dairy and there are foods that are not safe.  The kids read labels at the store and if there is no label, or they cannot verify that it is "safe" they will not eat it.  Yes, this is not to say that they are not a little sad if there is not a treat for them…but you know what it is manageable. At least that is what I think; we are just so very lucky!

I have written on this topic before when the girls were much, much younger - if you have a chance you may enjoy these posts from four years, and three years ago.  It was certainly fun for me - it is hard to believe how fast time flies…

Oh, and the yummy snack label Alena was reading?  They were not safe…Alena put it back, and said "oh, that is too bad that I cannot try them…" I We am are so very proud of my our girlies...

Please meet Fabian - #Galactosemia around the World #Germany {#Newbornscreening}

Welcome to the fourth Galactosemia around the World post.  Fingers crossed - that we all get to meet more people from around the world who are living with Classic Galactosemia.  Classic Galactosemia is a rare metabolic disorder which must be treated immediately by eliminating Galactose {a long milk sugar} from the diet.  Treatment must start as soon as the baby is diagnosed as otherwise the consequences can be deadly. For treatment babies drink non-dairy formula, as galactose is present in breast milk.  Treatment by elimination of Galactose from animal sources for individuals with Classic Galactosemia must continue for life. One of the tricky part about the diet is that the many regional differences in allowed foods.   Unfortunately not only treatment of this disorder varies greatly throughout the world, and even in the United States but also the detection through newborn screening.  In this series we have  met Lisa from Italy in November, we met Skadi from Berlin in December, and in January we Kai from North Rhine-Westphalia, Germany.  Today please meet Fabian from the Hessla region in Germany.  Please contact me if you are interested in being featured {germanpdx (at) gmail . com}

Now, please meet Fabian a happy and healthy three year old.  He lives his parents Katharina and Sven in the Hessla region of Germany and will become a big brother later on this year.

Katharina's pregnancy with Fabian was without any issues and he was born in 2010 by scheduled C-Section.  Newborn Fabian nursed without any problems right after birth, he did however spit up a lot.  Katahrina was told that spitting up by her baby was not an issue.  The newborn screening test was performed 36 hours after birth.  While filling out the paperwork for the test Katharina remembers telling her husband  "I never heard of any of these obscure disorders…"

 On day three of life Fabian became jaundiced.  Again, Katharina and Sven were assured that this was not unusual and were told "all boys turn yellow".  The test of Fabian's Billiruben test however reveled that his levels were highly elevated and he was immediately moved to the Nursery floor.  Katharina and Sven did not understand what was happening.  They were told, that with treatment under the lights Fabian's Billiruben levels should come down.  This did not happen and by day 4 of life Fabian was lethargic.  He no longer ate, his Billiruben levels increased, and his liver as well as kidney functions went - for lack of better term - crazy.  Katharina pumped breast milk, and Fabian was fed by GA tube.   His health deteriorated and by evening Fabian was transferred to the Pediatric Intensive Care Unit (PICU).  The physicians contacted pediatricians at specialized University clinics in Hannover, Heidelberg, and Gießen - they did not know what could be wrong with him.  Fabian was supposed to be put on dialysis on day 5 but he was too ill.  Katharina and Sven were told to stay the night with him.  Nobody knew what was happening and why Fabian's organs were failing.  Katharina and Sven held their baby the entire night - Fabian was so very ill. Then on day 6 Fabian's newborn screening results were called into the hospital. The test result revealed a positive reading for Galactosemia.  The physicians were astonished.  In medical school they had heard about Galactosemia, but none of the physicians in this hospital had never seen a patient with this disorder.

Fabian's feeding was immediately switched to a Soy formula; he improved almost immediately and after 4 additional days in the PICU he was transferred back to the regular Nursery where he stayed for another week.

Today Fabian is treated by the Metabolic Clinic of the University of Gießen and his GALT levels are currently tested on a quarterly basis.   In his diet Fabian is allowed to eat all vegetables, fruits, legumes,  cheeses that are aged at least for 3 weeks and also items containing clarified butter (Butterreinfette).  Katharina has found the dietician at their Metabolic Clinic in Gießen as a great help.  However, find the exchange with other parents the most helpful.  Katharina and her family met our friend Ulrike with her family (Skadi's family) for a weekend where they had many questions answered.  Katharina would like to thank Ulrike for all her support and help :)

Fabian goes to Kindergarten (Preschool) and Katharina made sure to educate all the teachers as well as other parents about Galactosemia and which foods he is not allowed to eat. At snack time the teachers make sure that the kids do not share any food.  Birthday's are always a big deal and children bring treats from home; to make sure that Fabian is included Katharina connects with the other parent and determine whether or not he can eat the specific treat.  If needed Katharina makes him a "safe" version of the treat. It is amazing that Fabian, even so he is only three years old, is well aware that he cannot have milk.

Happy Saturday..musings

How is everyone?  Everything is good at our little house in PDX. The first couple of weeks of 2014 have already been full of excitement and you can probably tell by my lack of blogging super busy.  Yes, I know week 11 of my posts for the 12 weeks of Winter Squash is still missing.  Please do not give up on me yet.  Pretty please?!

Let me tell you about all of the excitement that has been happening.  For starters I was appointed to the State of Oregon Newborn Screening Advisory Council and have had my first meeting the second week of January.  The meeting was at the Oregon State Lab was very productive and I learned so much more about the test, the follow-up etc..  After the meeting I got to tour the actual lab where the test for the newbornscreen is conducted.  It was just me and the head of the lab for the Oregon Newbornscreening program.  Let me tell you,  for me it quite emotional to visit the lab, see the tests, etc. meet the people who work so hard every day to safe babies.  And yes, this is the lab where Alena's positive Galactosemia newbornscreen was detected.  This is what saved her life - this specific lab...Visiting the lab was really amazing.  Seeing all the cards, each being a life, each being tested.  It was truly amazing.

Mia Rose and her Daddy..

The other excitement - you may have already heard about it - is that I am going to New York City.  Yes, me - I will be going to the event celebrating 50 years of Gallo Family Vineyards Hearty Burgundy. This will be amazing - and you can follow me along on Twitter and/or Instagram plus you will meet my secret guest :). Super exciting, right?!

There is more, well this is really not extraordinary, we did went for the girls blood draw and took the tram to get to OHSU.  As you may imagine neither girl is excited to get her blood drawn, but with magic cream, the tram and my friend Larissa coming along it was fine.  Well, Alena almost passed out again after the draw but I think it is because she just works herself up so much...Strangely it does however not get easier for me.  Isn't it?! I feel so guilty when Mia Rose cries and screams because she is afraid of the needle which in the end in her words "I did not feel it at all". I also get worried with Alena working herself up so badly that she is  on the verge of passing out And yes, I know that one draw a couple of times a year is really, really not bad...so I really have to get over it.   And yes, the glass is always half full...

Thank you friends - I have not said it many times before but I am so grateful for every single one of you visiting my little blog.  Thank you - Danke!!!

Mia Rose, Alena & Larissa after the blood draw

Please meet Kai - #Galactosemia around the world #Germany {#Newbornscreening}

Welcome to the Galactosemia around the world kick-off post for 2014.  This is the third of - fingers crossed - many more to follow in 2014;  it is my goal for you to meet people from around the world who are living with Classic Galactosemia.  Once this disorder is diagnosed treatment must be immediately begin.  Treatment for  Classic Galactosemia is the elimination of Galactose {a long milk sugar} from the diet.  The baby must be immediately put on Soy formula, as galactose is also present in breast milk and can be deadly.  As the babies grow the elimination of Galactose from animal sources must continue. The tricky part about the diet is the many regional differences in recommendation etc. Not only treatment varies greatly, but also detection through newborn screening. Please contact me if you are interested in being featured {germanpdx (at) gmail . com}

In November Lisa from Italy was featured, in December you met Skadi from Berlin, and today please meet Kai.  Kai is three years old and lives with his Mama Stephanie, his Papa Dirk and sister Kira in North Rhine-Westphalia, Germany.

After a pregnancy with a couple of hick-ups Kai joined his big sister Kira ; the very next day Kai came down with a fever.  He was moved to the children's floor of the hospital.  Stephanie nursed Kai without any problems; he however drank very little and therefore a feeding tube was inserted.  By the third day of his life Kai had lost a lot of weight, and was jaundiced {yellow}.  The medical team became concerned decided to immediately perform the his newborn screen test and rushed.  Luckily the result  - positive for Classic Galactosemia - came back the very next day.  Kai was four days old.  His liver enzymes were very dangerously high elevated and Kai was immediately transferred to another hospital with a Pediatric Intensive Care Unit {"PICU"}.  Stephanie had to immediately stop nursing Kai and he was put on Soy formula.  Kai recovered fairly quickly and his family was able to take their new baby home when he was three weeks old.

Today, Kai is a happy and healthy three year old. The family is cared for by the metabolic team in Düsseldorf and he is allowed to eat cheeses that have a   carbohydrate level below 0.1 g.  Kai is allowed foods containing clarified butter {butter oil/Butterreinfett}, milk protein, in addition to all fruits, vegetables, beans, and legumes.

Even so Kai is only three years old he already knows safe foods from unsafe foods. The family does not only keep "safe" foods in their fridge but Kai knows exactly which pudding to grab :) .  When out he always declines food from others and waits until his parents give the "green light".  Kai does understand that he cannot eat certain things containing milk as they would make him sick!

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!!!