Saturday Night Dinner - Salmon for...

...the adults and grilled hot dogs with french fries and salad for the ladies. Yes, you got it right! We had dinner guests tonight and Ron made the most delicious planked Salmon on the BBQ. Today we served delicious Pacific Coho Salmon to our guests in our little house here in Portand, Oregon. Along side I made - proven to be delicious :) - oven roasted baby potatoes with rosemary, and a nice salad of mixed greens. Hemp Vanilla Bean ice cream for the ladies, and a choice of "Cherry Garcia" for our guests :) - An overall successful Saturday night for all

Here is the link to the Hemp ice cream. It is delicious, and creamy -> http://livingharvest.com/products/ice-cream - Enjoy!!!

Friday Night Dinner...

...no,no, no not syrup or snow cones :) There was an end of the year party at Mia Rosie's school today and both girls were invited to the big party. Pizza, cake, popcorn and movies...whoo-hoo. How fun! And - this is just how amazing Mia Rosie's school is - there was cheeseless, vegan pizza just for our girls and one of the directors who is vegan :) Plus, the chef also made a vegan cake for our girls. And yes, the other kids were eating cheese pizza and cake with cream cheese frosting.

Have a great weekend!

What does this blog have to do with Galactosemia?

You may have asked yourself that question and I tell you that it has everything to do with Galactosemia. It is also our life story on how we deal with Galactosemia. This is our story...

Our first child Alena was born on a rainy November afternoon, in Portland, Oregon. It was the Saturday before Thanksgiving and everything was smooth sailing. In the hospital I saw a brochure that talked about Newborn screening and metabolic disorders. I had never heard about the test, nor even thought about metabolic disorders. I showed the brochure to my husband. Vividly I remember him smiling, and saying what are the chances...come on now. There is nothing to worry about. - For those of you who do not know me, I tend to worry - a lot. In any case, when we were ready to leave the hospital - all packed up, Alena already in her car seat I remembered that little brochure. I asked the nurse whether her heel had been pricked, she double checked and you know what?! It had been forgotten - no problem. We took her out of the car seat for the test and off we went.

We took our baby home. She was a fussy eater - threw up a lot. We kept records of how little she ate. The Friday after Thanksgiving Day we went to see our pediatrician. Something was wrong. Alena was unable to keep any food down. She was dry heaving. - our pediatrician saw us and had a gut feeling that something significantly was wrong. She sent us to the hospital and that is where we were that Friday evening, on Thanksgiving weekend. That is what saved our child! She was immediately whisked away for a spinal tap. The infectious disease physician met with us and started her right away on three different types of antibiotics. Wow - we were stunned, shocked, and in absolute disbelief. Our daughter was diagnosed with what? Classic Galactosemia? We had no idea - the only thing we knew at that time was that she was at risk of developing E.Coli Meningitis...our pediatrician told us to not search the Internet - which Ron still did. By morning Alena had a seizure, the culture grew, and it was confirmed that she had E.Coli Meningitis. Here was our beautiful baby girl on her one week birthday in the Pediatric I.C.U. It was the most scary time in my life! Writing this post puts me back in the same mood and I swallow back tears. There she lay - my little girls - with I.V.'s coming out of her, a catheter, she needed blood platelets...we did not know whether she would survive. I never left her bed side. It what at this time, exactly at this time that Ron and I decided that if our precious baby survived that dealing with Classic Galactosemia would be NO BIG DEAL and we make it manageable. This is what it is manageable and NO BIG DEAL!!! Compared to the other option, even dealing with potential complications is a BREEZE. One can certainly differ with me, however this is my opinion and how we deal with this disorder.

Now back to our story - eventually I also did some online research and one of the most important things to me was to find pictures of older kids living with Galactosemia, and understand what kids with Galactosemia eat. I really did not find much. Things I did find were simply quite frightening - which is why our pediatrician told us to stay off the Internet! So this is the basis of my little Blog. Yes, a diagnosis of Classic Galactosemia is scary, but it is manageable. A diagnosis then gives a couple of options. Stick the head in the sand, become a victim, thrive on things that are not possible; take the bull by the horns, run, dance with it and embrace it. Learn about it, stay positive, and empower. So this is our story, and what this Blog is about. The sky is the only limitation!!!

Recall of Unilever 24-Count Boxes of Popsicle® Sugar Free Orange, Cherry and Grape Flavor Due to Undeclared Milk

Click on link fot details about this recall.

Recalls, Market Withdrawals, & Safety Alerts Unilever United States, Inc. Issues Allergy Alert for Mislabeled 24-Count Boxes of Popsicle® Sugar Free Orange, Cherry and Grape Flavor Due to Undeclared Milk

Thursday Night Dinner...

...do I dare admit that we went out - again - on this beautiful summer evening?! Yes, I am :) - we went with friends to the Hedgehouse in SE Portland. Good food, safe food, great adult beverages, outside seating, and a nice area with plenty of grass for the kids to play. Our kids ate the usual P.A.B.S.T. without the "P" :) which makes it an Avocado, Bacon, Sandwich, and Tomato (the"P" stands for Provolone) - while their very good friend ate Mac&Cheese. And yes, Alena ate her sandwich while sitting next to her friend on the bench. They both know not to share! Now who says you cannot go out to eat when following the Galactosemic diet?! It is no problem...

Here is the link to the Hedgehouse -> http://www.newoldlompoc.com/hedgehouse_home.html
Just in case :)

Wednesday Night Dinner...

....the camping dinner Fajitas this time - for the first time ever - at home. Quite the dinner success - whoo-hoo. Along side we had homemade guacamole, Tofutti sour cream, additional sliced avocado, and tomatoes. An easy, delicious, and fun dinner on a summer weeknight. Now talking about weeknight, I am so tired tonight and get our girlies to bed :) In the background I hear Alena reading a book to Mia Rosie. Oh, how very sweet...

Have a good night, all!

Birthday Dessert...

...What is a Birthday without dessert? We walked to Pix after dinner. Delicious desserts, most of them are however not Galactosemia "safe"; the good news however isnthat there are always a couple vegan options. Either sorbet, fruit pate, lollipops, gum, or some chocolates. So there is always something to be found for our girlies as well :) - Usually both ladies choose ice cream (sorbet) but today - can you believe it? - both of them opted for a fruit pate skewer. Pineapple, cassis - and yes, it was a hit!

Just in case you would like to try them here is the link http://www.pixpatisserie.com/

Tuesday = Birthday Dinner Night...

...happy birthday to my husband!!! Alena started the day by playing "Happy Birthday" on the piano to Ron, and we ended it by going out for a celebratory dinner. The girls however were a little bit confused, why we did not have a party tonight ;) In any case, Ron chose Pok Pok which is a restaurant serving Southeast Asian Streetfood. It is amazing and the majority of the items are "safe" for the girls to eat. Amazing Vietnamese Chicken Wings, sticky rice, Northern Thai Herbal Salad, Corn in coconut cream, and Kaho Soi Kai - Northern Thai mild curry noodle soup. And drinking vinegar for the girls; raspberry for Alena and honey for Mia Rose.

Just in case here is the link for this amazing restaurant(s) http://www.pokpokpdx.com/

Look at my girl climbing the walls :)

...circus classes are paying off :)

Monday Night Dinner...all Oregon

homemade Gnocchi. Almost the last of our bounty from the Farmer's Market last Saturday. All Oregon grown: potatoes out of which I made the Gnocchi, tomatoes, sweet onion, garlic shoots, and - even better than just Oregon grown :) - homegrown green beans. Some panchetta, flour milled at Bob's Red Mill in Oregon, some salt, pepper, olive oil, and the fabolous gift of calcium Paresiano Regiano. Delicious end to a good start into the week :)