Coconut Kefir - Plain, Vanilla, and Strawberry

Monday is our shopping day and yesterday we found something new Kefir made out of Coconut Milk. In Germany I used to buy Kefir quite a bit, but obviously made out of milk. Mia Rose and I sampled the Strawberry Coconut Kefir in the store. Both of us liked it - it has a lot of strawberry in it, and it also has quite a bit of Calcium in it. Quite delicious!!! Oh, and for those of you avoiding Soy it is also Soy free. In addition to the Kefir this company also sells "regular" Coconut Milk which I have heard is also very, very tasty :)

Here is the link to the company website http://www.turtlemountain.com/products/coconut_milk_kefir.html

#Galactosemia on Twitter

If you are on Twitter just wanted to let you know that I have been tweeting recalls, new blog posts, etc. with the Hashtag #Galactosemia. Recalls posted to Twitter are directly to the FDA Site, recalls posted to the blog will continue to include the link to the official recall site.

I hope this works for everyone. Thank you!

Sunday morning thoughts about Galactosemia

Happy Sunday morning! It is a rainy morning here in Portland. We just ate "German" style pancakes with blueberries, and homemade marionberry jam. All from last summer - it sure give a ray of sunshine in the midst of winter drearyness :). Both girls are now off to enjoy some rare tv time, Ron is off running a 1/2 marathon, well and I am here with time to think and write. There are so many things related to Galactosemia that have been on my mind lately including a) Why did we choose to have a second baby after knowing that both of us are carriers -> quick answer: why wouldn't we?; b) Is there a need to prevention of Galactosemia w/in utero screening -> quick answer NO, WHY? FYI - This was triggered by a post I saw on Twitter today; c) this is related to b) - Importance of the Newbornscreen -> please, please, please do NOT forgo the test; d) Wonder about different approaches to Galactosemia Follow-up at the Clinic; e) Are there any dietitian in the United States interested in Galactosemia? If so, please let me know :) ; f) Do we need a cure for Galactosemia? Or just better more advanced diet management? .....OK - I will write on the Galactosemia Follow-up and most on the other topics another day.

I don't know about you, but we love our metabolic physician. He knows Galactosemia, answers all questions with confidence, and does not ever leave us with a feeling of helplessness but gives us confidence. He is honest, experienced, has done research on Galactosemia and just great at what he does. Well, he is also the man who tracked us down on a Thanksgiving Friday six years ago when Alena's Newbornscreen came back. He was available to talk with us on the phone the entire weekend :) Truth be said other metabolic disorders are certainly much more exciting to researches but that is OK and it does not reflect the treatment of our girls. However, what I find frustrating is the different approach every single clinic takes on the follow-up on people with Galactosemia. Ophthalmology Screens, identification of genotype, blood draws on a quarterly, or even monthly basis, several ultrasounds of organs a year, etc. For us it is a bi-annual blood draw, annual ophthalmology screen (which BTW I need to schedule ASAP), and an annual visit to the metabolic clinic. So at times it makes me wonder whether our girls should get more "face time" with the physicians. One thing I especially wonder about is whether the ultrasounds of the organs are superior to the manual checking. That is really and truly the only thing which makes me a tiny bit uneasy. I agree with our physician that genotype ID is not necessary. It does not change the diagnosis or management; true it give additional information but how useful is it? It is interesting but I do not see the use. Frequent blood draws in my opinion are definitively essential in the infancy and toddler stage. For us our kids are older, levels have been great so there is no doubt that the bi-annually draw is sufficient. But the only thing I wonder is whether there should be ultrasounds? Is there a substantial benefit to the ultrasound vs. the manual exam? Then again, I am not physician...

I am very curious to hear if there are clinics in the United States which include ultrasounds in the examination. I know that Austria, Italy, and Germany do. What do you think about this? Does the examination at your clinic include ultrasounds? I love to hear from you...

Truth be said, that I probably over think this - but I cannot help but wonder. So please, do not get me wrong as I said above we are completely happy with our metabolic physician. I just wonder whether ultrasounds should be conducted. We certainly rely on his professional opinion, I am just curious. And no, I am not changing my thoughts on Galactosemia. It is a completely manageable disorder, it is part of our life and does not rule our life. The glass is always, always, half full never half empty. So if you have read this entire post...thank you! Have a great day!

Quick dinner - Whole Foods frozen Chicken Ravioli w/ salad

Ahhh, I admit tonight is a convenient food night as I have a meeting
in a little while. So it's the perfect time to try out the frozen
chicken ravioli (CG safe) which we found at Whole Foods this week. I
was so excited when I read the label and found them to be ok!!!

So tonight is the night we try them out...four more minutes :) Oh yeah
and supplement the convenience food I made a big salad... Better go -
timer is about to go off

Please do not allow your child to eat in the play area...thank you!

One thing that drives my up the wall is parents allowing their children to eat snacks, drink milk, etc. in a play area. Isn't it common knowledge that there are so many food allergies that no longer is it a good idea to let a child eat in the play area. I am really not concerned about my own children because I know that they won't eat or drink from somebody else without first asking me. OK - let's be honest I certainly do not want them covered in a substance containing milk but still that would not be such a big deal. But it is a big deal to the parent of a child with a severe food allergy where just airborne peanut butter can trigger an allergic reaction...

So why am I writing on this topic? - Last week we went to a store to buy a gift. The store we went to actually has an indoor little play area for the kids. Which by the way is a great feature in a small store :) - In any case, there was another little girl, Alena, and Mia Rose. Then I saw that the child inside the play area was eating away (and crumbs all over the place) on a peanut butter (!!!) and jelly sandwich. WOW~ that I have not seen before, plus it was in a clothing store. In any case, I approached the mother whether her daughter could eat outside the play area because my daughter has allergies. The mother responded "Maybe your daughter should leave the play area!!!" which left me for a quick second speechless before responding that it's not OK to eat in a play area...It was baffling but you know, I remember that until CG I never ever thought about reactions to food be it an allergic reaction, or a metabolic disorder. Maybe parents are not aware of the situation until their kids go to school. Never-the-less people need to be aware of this - so please remember there are so many food allergies please, please, please do not let your child eat in the play area.

Oh, one last word I probably should have told the store employees and not dealt with it on my own. Oh well....I will get off my soap box for now.

Waffles - Galactosemia friendly recipe :)))

Here is the Waffles recipe I use - turns out fantastic...

You will need

1-3/4 C Flour

3 teaspoons Baking Powder

1/2 teaspoon Salt

3 Eggs, separated

2 C Soy Milk (or rice, oat, etc.)

4 tablespoons Vegan "Butter" (I use Earth Balance)

3 tablespoons superfine Sugar

1. Preheat waffle iron
2. Put flour, baking powder, salt into a mixing bowl and combine.
3. Add egg yolks, Soy Milk and melted Vegan "Butter". Mix it well until you have a smooth batter
4. Beat egg whites until stiff, then add sugar and beat again.
5. Fold egg whites into the batter
6. Pour about 1/2 cup of the batter into waffle iron. The light of my waffle iron turns green when they are done. Takes about 3 minutes or so.
7. Serve them hot - we eat them with more Vegan Butter, and real Maple Syrup.

Adapted from the The Complete Vegetarian Cuisine by Rose Elliot, Pantheon Books, 1996.

Weekend Breakfast...lazy days

Who does not love the weekend. To us lazy weekend's are the best. Take it easy, go out for breakfast, or just stay in PJs way past mid-day and eat waffles or pancakes at home. It is the best!!! Both girls love both waffles and pancakes. Which kid does not love it?! So sometimes we go out for breakfast and pancakes are always the item of choice for Alena. Pancakes are easy - at home, or going out. Here in Portland are plenty of restaurant's that serve delicious vegan pancake's along with vegan "butter" Earth Balance. I also make them quite a bit at home. Either "German" style or "American" style. The "German" style is almost more like a crepes, making thin pancakes - the "American" style pancakes I call the puffy pancakes :) Both are delicious but "German" style are made more frequently in our house. Waffles are a slightly different story. I have not found a restaurant serving dairy free waffles. Oh well, that is nothing to fret about as they are easily made at home. OK yes, I have found several frozen toaster waffles which are acceptable but quite frankly we are not crazy about the taste. So it's a good thing we have a waffle iron. Actually received it as a wedding present a long, long, long time ago. I make the batter from scratch and they turn out very delicious. The girls love them hot or cold! By the way, to make the batter Galactosemia friendly I adapted the recipe and use soy milk (or rice, oat, etc.) in lieu of milk, as well as Earth Balance in lieu of the "cow" butter. It's so easy and there is no reason the kids should not be able to enjoy their weekend waffles every once in a while. Please always remember that anything is possible :) -

Last sentence :) - I am happy to post the recipe, just drop a comment or an e-mail and I will do so.

Happy Sunday!

Squash Risotto Recipe

The Squash Risotto turned out delicious last night and I think that it also would be delicious without the Parmigiano Reggiano. Here is how I made it

You will need

- 1 small winter squash, peeled cut into small chunks (about 1-1/2 cups)

- 1 small onion - diced

- 2 cloves of garlic -finely chopped

- Olive Oil

- 3/4 C of dry white wine (I used Sauvingon Blanc)

- 1 C of Risotto Rice (Arborio, Vialone Nano, or Carnaroli - I prefer Carnaroli)

- 4 - 5 C of good chicken stock (I Pacific Foods Chicken Broth - one "box")

- Rind of Parmigiano Reggiano & additional grated Parmigiano Reggiano (Optional)

- 1 - 2 TBL Earth Balance (Optional but use if you omit the cheese)

1. heat 1 - 2 TBL of Olive Oil

2. add Onion , some salt and saute until onions are soft

3. add Squash & Garlic and saute for another 5-8 minutes until squash get golden color

4. add Rice (you may need to add a little more Olive Oil) and saute until rice kernels get a

little translucent

5. add White Wine and let mixture absorb all the liquid

6. add 1-2 ladles of Chicken Stock (all rice should be covered and extra liquid should be on top)

& stir well

7. add Parmigiano Reggiano rind if using

8. add more Chicken Stock 1 - 2 ladles as needed (as the liquid gets absorbed into the rice) -

keep stirring - continue until rice is tender, and the dish is smooth and creamy

9. If using, add Earth Balance

Serve immediately we eat it with additional Parmigiano Reggiano

As a side note, chop the squash into really small chunks as it will not fall apart :)

If you make it, would you please let me know if you liked it? Thank you :)

Squash Risotto & Pancakes for dinner

One of my rules is that I will only cook one meal for the entire family. I do not believe in cooking one meal for the adults and a different one for the kids. Everybody eats what the same...yesterday however was the first time ever, ever, ever that I broke my own rule.

So here is how it all happened. From our weekly produce delivery we still had winter squash, beets, broccoli, and some other greens. I decided earlier in the day that it would be Risotto for dinner but then later on changed my mind to savory pancakes with Parmigiano Reggiano served along with oven roasted veggies. In any case, I asked Alena how either meal sounded to her but savory pancakes were not her thing so my executive decision was to make Squash Risotto. As I was making dinner, Alena came back into the kitchen and she asked "...Mama are the pancakes ready? I am so excited that you are making pancakes for dinner..." - ohhhhh, how could I resist, right?! So I broke my own rule for the first time and made pancakes for the girls and delicious Squash Risotto for the adults.

Who would have thought life to be like this...

...good, full, great, and just plain normal. I certainly would not have thought it to be possible to lead such a completely normal life when our children were diagnosed with CG. Today I certainly don't think about Galactosemia all the time. Sure, I may think about it a once or twice a day, but often enough I don't think about it at all. The same holds true for the girls. They don't constantly think about it either. OK - truth be said Mia Rosie is still a little young but Alena certainly knows she has Galactosemia however it is no obstacle to her. I just heard her tell someone the other day "...you know I cannot have milk..." Just plainly like that. Not with a oh please feel sorry for me because I cannot have milk, or ice cream with milk/cream in it, just a plain old statement. A few years ago I certainly would not have thought that this is possible. Regular school, birthday parties, play dates, eating out, travel... None of these are problems - of course I always go through to motion to make sure there is food available but besides that it has become an integral part of our lives. Of course I am also ever so grateful for my friends which make sure that they have vegan, milk free treats, or milk free food for our children.

On the same token I certainly felt that we could never eat out, nor travel....all was just a myth and now we eat out, and travel with ease. Sure, there are quite a few places outside of PDX which are more critical food wise for the girl but it certainly is not unmanageable, or something that needs complaining, or whining.

OK - off to our afternoon class at Do Jump. Circus Acrobatics for everyone...yay check it out www.dojump.org. Alena loves it....

Have a great day!