Tuesday, December 30, 2008

Fruit Pie at Trader Joe's

We just went shopping at Trader Joe's and what did I see in the middle of the isle? Yup, fruit pie. I am not generally one for pie, but out of habit I just checked the label anyways. You may have guessed it, the pies do NOT have any milk products in them. Based upon that great discovery (I would have bet they have milk products in them) I of course had to buy one, and again I am really not crazy about pie. In any case I bought a Cherry Pie, other types I saw were Blueberry, Mixed Fruit, and Apple there may be more. The box is still closed and nobody has tried it yet so I cannot speak to taste yet. I will let you know.

Happy pie eating to all :)

Rescheduled clinic appointment...new year, new deductible...

I am just venting. The girls had an appointment at the Metabolic Clinic last week. We had a major snow storm here, the once every 40 years kind of storm, so the clinic was cancelled. Made sense b/c we would not have been able to go. The streets were not cleared off, chains required, and OHSU sits on top of a major west side hill...(pictures of the snow are posted on my other blog - http://germanpdx.blogspot.com/). In any case, the appointments are now rescheduled for next week Tuesday which is great but it is a brand new insurance year. So we have to start up again with the $500 deductible for each person before insurance pays...OK I really should not gripe, I am so happy that the girls are well taken care off, but you know it just never ends. Right?!

Sunday, December 28, 2008

Pharmacy Listing - New Feature of the Blog

Finding a pharmacy where we feel comfortable has been challenging until we found the pharmacy at New Seasons Market. Unfortunately they closed down the pharmacy (due to the competition), but provided a list with pharmacies which are independently owned, and/or also compounding pharmacies. Look for the list on the left hand side of the blog. We chose one pharmacy from the list and have been pretty happy. In my experience large corporate owned pharmacies have not been as good. In any case, I added a list of all the independent/compounding pharmacies in the PDX area. Some of the mail order ones are located in Medford, Grants Park, Colorado Springs, and Youngtown, Arizona. Not sure if they also provide pick-up. I have also added links to their respective website (if they have one).

We use the Brooklyn Pharmacy and the girls thankfully did not have the need for any meds since New Seasons Market closed their pharmacy. We have NOT tried out any of the other pharmacies. I hope that the list is useful to you. Will you please let me know?! Thank you!

Saturday, December 27, 2008

Hopworks...great pub, restaurant and (dare I say) beer...

Today we went swimming and the girls really wanted hamburgers for dinner. We decided to go to Hopworks in SE Portland. This place is fantastic. There is a play area for the kids, they serve you (if you ask for it) pizza dough as play dough for the kids, and just really fun. Their menu is sustainable and most items are made out of organic ingredients. There is a kids burger (we of course ask for it w/o the cheese), but they also have "Grilled free range chicken" on the menu which is served with BBQ sauce. The chicken and the BBQ sauce are fine, and we also allow the girls to eat the burger. They also have pizza which can of course be ordered without cheese. The dough does not contain any dairy. - Oh, and just to mention it again their beer is fantastic :)

This is just another great option for a casual fun dinner here in PDX where we do not need to worry about the ingredients. The official link to the restaurant is http://www.hopworksbeer.com/ Happy dinning everyone :)

Friday, December 26, 2008

The upside for not having milk products in our girls diet...

Is there really an upside for the girls growing up avoiding products containing conventional milk? At first glance it maybe not, but honestly...since adding the recall feature to the blog I have been looking at all FDA recalls and let me tell you. A bunch of items including chocolate Santa's to biscuits have been recalled because, as the FDA puts it, they may contain Melamine. Melamine? Here is a link to site of the World Health Organization explaining melamine. http://www.who.int/csr/media/faq/QAmelamine/en/ At this point I am really, really happy that I do not have to worry about this chemical in my kids diet. Now isn't that a positive?

Of course I can also find other positives sides for avoiding milk products. Let's just think about cholesterol. Their diet is just so much healthier, and by that mine has become healthier too.

Happy December to all.

Wednesday, December 24, 2008

Exciting news from Austria...

In the Austrian Newsletter I read the information about a 29 year old woman with CG who must have had a baby by now. She wrote the article to the newsletter when she was 38 weeks pregnant and said that after a year of trying she had become pregnant. Isn't this exciting news? As a mother of two girls who both have CG I just like to hear about women with CG who do become pregnant.

NOTE: I just revised this posting. It originally said that the woman did have fertility
treatment. I re-read the article and she did NOT have fertility treatment. Sorry about

Tuesday, December 23, 2008

Very delicious, rich chocolate tart...

This is a quick, delicious recipe - nobody will guess that it does not contain cream

You will need
1 frozen vegan pie crust (I like the one from Maple Lane Bakery out of California)
8 oz of dark chocolate (I like Scharfenberger)
1 cup of Silk Creamer (I also use the flavored ones for a twist)
1 Egg beaten

- Pre bake pie crust according to package
- Chop 8 oz. of chocolate
- In a small pan bring 1 cup of the Silk Creamer to a simmer
- Put chocolate pieces in a metal bowl, place in the simmering Silk Creamer until melted. Whisk
until completely melted
- Add 1 egg beaten (be careful and continue to whisk
- Add chocolate filling to the pre baked pie crust
- Bake for 15 - 18 minutes at 375 F

Serve with vanilla soy ice cream, and/or Soya Too! Whipped Topping, or in the summer time serve with berries.

This is yummy :)

Christmas Dinner at our house is completely Galactosemia friendly...

Like every year we will be making our Christmas Goose along with braised red cabbage, chestnut-fruit stuffing, potato dumplings, and gravy. This is our 4th (or is it the 5th?) year of making a Goose for dinner. I use the Joy of Cooking recipes and if there is any butter, milk, etc. I just swap it out for Earth Balance, or Soy Milk. For desert I will make our chocolate tart. This is very, very rich and chocolaty. I will post the recipe separately. Happy Holidays to all.

Sunday, December 21, 2008

Cookies, Part III - more galactosemic friendly cookies for the holidays...

With this snow I am back at making more cookies. All of the chocolate sables are already gone. I decorated part of them with a walnut and baked them like that. They were my husband's favorite...and all, yes all of the chocolate ones, are already gone. So I am making more. Here is another recipe you may not know yet...

Hazelnut Macaroons - Haselnuss Makroenchen

3 Egg White
1 pinch of salt
100 gram Sugar
300 -350 gram finely ground hazelnuts
Additional whole hazelnuts for decorating

1. Beat egg white and the pinch of salt until they are firm
2. Add 1/2 of the sugar until egg whites are "shiny"
3. Add rest of the sugar and hazelnuts mix well
4. PREHEAT oven to 350 F
5. Use two teaspoons to put dough on cookie sheet (put parchment paper on the cookie sheet)
6. Top each mound of dough with a hazelnut
7. Bake 8-10 minutes

Depending on the size of your dough mounds this recipe can yield up to 50 pieces. I generally make big mounds and therefore I don't get more than 30 each out of this recipe...

Happy baking - please let me know if you like this...

Friday, December 19, 2008

Cookies, Part II, makes 6 different types... - fit for the diet of persons with Galactosemia

Sables - Basic Recipie, sorry measurements are metric here is the link to a converter http://www.unitconversion.org/weight/pounds-to-grams-conversion.html

175 Gram Margarine --> I like Earth Balance
75 Gram Sugar
1 TSP Vanilla
1 pinch salt
1 TBP "Milk" I use regular Silk Soy Milk
250 Gram Flour

1. Stir margarine, sugar, vanilla and salt together until soft
2. Add "Milk"
3. Add Flour --> mix everything together until you have a smooth dough
4. Divide dough into two parts, and make rolls out of the dough
5. Wrap dough into clear plastic wrap and refrigerate for about 30 minutes (or you can also put
the dough into the freezer for about 10 minutes)
6. Preheat oven to about 400 degrees F (if you can adjust to 390 F its best)
7. Cut slices (about 5mm thick) off the rolls and put on backing sheet
8. Bake immediately

VARIATIONS on the basic recipe

- Before you add the flour add either 100 gram ground Pine nuts, or ground Walnuts
- After cutting, decorate each cookie with either pine nuts, or a walnut
- After baking sprinkle with powdered sugar

- Add 50 gram finely chopped candied dried fruit
- After baking brush with lemon/powder sugar mixture and some finely chopped mixed dried fruit

- Add 2-3 TBL unsweetened cocoa before adding the flour
- You can decorate these (if you wish) with powdered cocoa

- Follow recipe for basic sables
- Follow recipe for chocolate sables

1. Marbled Sable
- mix chocolate and vanilla dough together

2. Rolls
- roll out vanilla & chocolate dough
- lay chocolate dough on top of vanilla dough, roll back up

I hope you will enjoy these cookies

Thursday, December 18, 2008

The lactose-free chocoloate Santa's are back at New Seasons...

I am excited to tell you all that New Seasons Market carries again the 60% chocolate Santa's. They do NOT contain any milk derivative and come in a pack of three. Oh, and they are not huge kind of small but really, really good. They are made by Storz Schokolade of Tuttlingen, Germany. And yes, Tuttlingen is my home town in Germany. We actually have a whole big box of them as my Mom just came to visit and brought them along from their factory store.

Please let me know if you like them. Our girls LOVE them....http://www.newseasonsmarket.com/. FYI - there is also online shopping available if you'd rather get your Santa's delivered....

Happy snow day to all here in PDX...

P.S.: Here is the link to the manufacturer http://http://www.storz-schokolade.de/index-en.htm

Tuesday, December 16, 2008

Recall's updated as they come out - How to subscribe to the Blog

I have added the "Recall" on products to the post and am adding new information as it is released. In order for you to get the information as it gets posted you can actually "Subscribe" to the blog. The link to subscribe to the blog is found on the left hand side underneath the "recall"section. I hope you all find this new feature helpful. Please let me know.

Did you know that you can also post comments to the blog, or just click on the icons underneath each entry to give me some feedback. I really would appreciate it :)

JAM - Breakfast on Hawthorne...

Alena and I had breakfast this morning at JAM. Just her and I on this cold, snowy day in Portland. Mia is in school, and Ron at work. Alena is still a little sick and its a good day for her to stay home with Mommy :). We dropped off Mia, then Rona and then the two of us went out for breakfast. Just the two of us like a couple of weeks ago in Chicago but what a difference.

We went to JAM (address etc. is listed to the left hand side of the blog under "restaurants") what a great place. There is Soy Milk, Vegan hash browns, even Vegan Blueberry Pancakes served with Earth Balance...Alena almost ate both pancakes (from the kids menu of course), with syrup, drank a glass of pineapple juice and both of us had so much fun. There are plenty of crayons, paper, toys, books, etc. and of course the Oregonian.

Have a great day everyone.

Wednesday, December 10, 2008

So glad we live in Portland...Chicago Restaurant experience

Alena and I had to go to Chicago this past weekend. It was so, so bitter cold and snowy. Alena was very excited about the snow at first, but she just hated the cold. She actually wanted to wear a hat, two scarves, gloves, and two sweaters. Brrrrrrrrr....it really was cold, and we are just not used to it anymore.

The air travel went well. I prepared with snacks for the trip, and then stopped at the next Whole Foods to get Soy Milk, bread, etc. I hate to admit it, but for dinner we had McDonald's since I knew that it'll be OK. One night we had pizza without cheese, and without sauce. Turns out, that the place we ordered from actually puts cheese also in their sauce. No offense to all you cheese eaters out there, but how much cheese do you actually need? So this told me that eating out would be a little bit more challenging. But then again, this was Naperville and not Chicago... Sunday - Monday we spent with friends in Evanston. Monday morning Alena and I went out to have breakfast. I still had our loaf of bread but I felt certain that I would not need it, that the waitstaff would be prepared for vegans, had soy milk, etc. well no question in my mind because this is Evanston a University town, right next to Chicago one of the largest cities in the country. Well, let me tell you was I WRONG!!! - The restaurant (and it was funky not your run of the mill place) did not have ANY soy milk, did NOT know about the bread, added butter to the oil to fry the eggs in (never heard of this one here before), and put dried cheddar cheese powder over the hash browns. WOW....turned out Alena ate the bread we brought along, had a poached egg and bacon. So eating out was of course still possible, put just a lot more challenging.

Am I glad we live on the west coast where it seems almost every place we go to has soy, or rice milk, people are aware of what is vegan, etc.

Sunday, November 30, 2008

Cookies for the Holidays...recipies fitting into a dairy free kitchen

Now with Thanksgiving over we are getting ready for Christmas, and the Holidays. I have always liked to make cookies this time of year. From now to Christmas I will post recepies I make which are all safe for the Galactosemic diet

Ausstecherle (cut-outs)

Ingredients for the dough (sorry its all metric, but you can convert here http://www.onlineunitconversion.com/ounce_to_gram.html --> you must adjust the type of units on the screen)

250 gram Flour
125 gram Powderd Sugar
Grated lemon rind of 1/2 lemon
1 Egg
150 gram Earth Balance (this is where the recipe calls for butter)

1. Add flower, with sugar and lemond rind.
2. Add the egg in the middle, and surround it with the Earth Balance cut up in small pieces
3. Mix everything up either by hand or with the dough hook on your mixer
4. Roll dough up put into foil, and let rest in the fridge for at least 1 hour

5. Preheat oven to 360 F
6. Roll dough 3 - 4 mm thick out
7. Cut out hears, starts, etc. and put on baking sheet that has been lined with Parchment Paper
8. Bake 8 - 10 minutes until cookies are golden
9. Let cookies cool off

125 gram Powdered Sugar
2 - 3 TB Lemon Juice

10. Mix sugar with the lemon juice --> it must be thick
11. Brush frosting on the cookies
12. Decorate cookies with colored sugar, or any other decors

Tuesday, November 25, 2008

Pumpkin Pie for Thanksgiving

I confess that I will not be making my own Pumpkin Pie. I certainly had all the intentions of making one for Thanksgiving but then I called Sweet Pea Bakery...Yup, they are open on Thanksgiving and will have Vegan Pumpkin Pies. Ours is already ordered and we will pick it up Thanksgiving Day.

So what can you do if you are not as lucky as we are? I just looked at the recipe in Joy of Cooking. The recipe uses either evaporated milk, or heavy cream - to make the pie Galactosemia friendly I would substitute the heavy cream with Plain Silk Coffee Creamer. I make a chocolate pie where the recipe also calls for heavy cream. There I substitute with Plain Silk Coffee Creamer and it works perfectly...Let me know how those pumpkin pies turn out :)

Friday, November 21, 2008

Alfredo Sauce Mix

Today we tried the Alfredo Sauce Mix from "Road's End Organics". When I first put the sauce together in the sauce pan I was not so sure. But it actually tastes good. I added on 1 TB of olive oil and some plain, unsweetened soy milk. Then I put the pasta (we had Trader Joe's Alphabet Pasta what a hit that is :) ) in the pan with the sauce and tossed it all together. I also got a box of pancetta from Trader Joe's which I fried up and put that on top of the pasta. For Alena I grated some Parmesan Regiano as well...Bottom line the Alfredo Sauce Mix is a great alternative www.chreese.com...

Thursday, November 20, 2008

Birthday Party

Our big girls is having a Birthday Party this weekend. She is so..... excited, and to be honest, I am very excited too :)

This week we already went to Sweetpea Bakery to pick out her birthday cake. Yes, I admit I am not making the main cake this year myself. But it seems to me that all the parties I had been to all the girls had cakes that weren't baked by their parents....In any case we went to Sweetpea Bakery. Alena picked out a chocolate cake with vanilla frosting. The frosting however MUST be pink she said :) Prior to picking out the cake she of course sampled just a little bit...Sweetpea is such a GREAT place. Everything is vegan so the girls can eat whatever they like. Yummy donuts, cakes, linzer bars, bagels with cream cheese, even soups....In case you have not been to Sweetpea here is the link http://www.sweetpeabaking.com/.

As for the Birthday party there will be the cake, chocolate soy milk (of course it has to be chocolate), games, music. For dinner we will have potato salad and Wiener's. The theme of course is a fairy with lots of pink. It is a all "Prinzessin Lillifee" :) (see picture above...

Saturday, November 15, 2008


It is November again - Alena is about to turn big 5!!! WOW - time flies by. She is doing so great, and I am just so proud of her. Still I am plagued by the memories of her first six weeks of life. To this day I keep having flashbacks to the time my little baby was lying in the hospital bed and we did not know whether she would be OK. The scare whether her little body would continue to be up for the fight, putting in the PIK line, the scare whenever she needed to get platelets...The sounds of the machines beeping...It still continues to hunt me.

But you say, she is doing so great why do you still dwell on it...I do not know but it is still there and always will be there. I reminded me how fragile life really is. Five years ago one Saturday was the happiest day in my life, one week late it was the scariest day of my life with my little baby being in the PICU....OK - I feel much better now that I have written this off my chest.

Thanks for listening...

New feature on blog - Recall information

I just added a new feature to the blog and am now listing food recalls as they become available. The information is on the left hand side of the blog. Please let me know if this is helpful for you...

FYI - the information is added as it becomes available, and is for recalls in the United States only. Please also not that recalls prior to November 1st, 2008 are not mentioned. For an all inclusive list go to http://www.foodallergy.org/alerts.html

Tuesday, November 11, 2008

Legacy Emanuel Hospital NICU celebrates 30 years

Last week I saw in the paper that Legacy Emanuel Hospital is celebrating 30 years of its NICU. To celebrate all those who have been patients of the NICU, or been affected by the NICU of Legacy Emanuel are invited. The celebration is on the 18th of November, not quite five years after Alena was a patient there. Should we go, should we not go? - We talked about it and decided that we will be going. When calling to R.S.V.P. I got all choked up and teary eyed. This is the hospital that saved our little girls life. This is the place where I spent much of the month of December in 2003. I never left from my baby's side, yes, I did get a cot but I could not leave. It may not seem like much to the reader, but to me just thinking about it gives me chills and yes I could start to cry. Alena still has a scar on her arm from the PIK Line which was set then...For the longest time I could not bear even driving past Legacy Emanuel. Always being hunted by the memories of our fear, and not knowing what would happen. Of course we have the greatest outcome, and that is a reason to celebrate. This is why we will go with the entire family to celebrate the NICU. Hopefully we will also get to meet some of the wonderful nurses, and Doctors who helped save Alena.

To learn more about Legacy Emanuel Children Hospital click here, there is also a link to the NICU...http://www.legacyhealth.org/body.cfm?id=34&oTopID=34&PLinkID=21

Vegan Pesto available in stores

This product may have been available for a while, but I just discovered it at our grocery store. For quick meals I used to keep Pesto around all the time. I discontinued that practice due to the cheese content in store bought Pesto's and making it myself has just been too involved...In any case, today I gave it another try to see whether I can find vegan pesto. I found it, but cannot talk about how it tastes yet. I am so excited...

In any case here is the information

Vegan Pesto by Rising Moon; we do buy their frozen Raviolis from time to time...they taste great!!!



Monday, November 10, 2008

New Soy Yogurt...

There is a new soy yogurt on the shelves at our grocery store. It is from Turtle Mountain the "So Delicious" brand - I already love the ice cream. They have different flavors than Whole Soy including Cinnamon Bun which Alena likes a lot. The consistency of this yogurt is much thicker than the Whole Soy brand. I like both and have not yet decided if I prefer one over the other. At this time I buy whatever yogurt is on sale :)

More information at http://www.sodeliciousdairyfree.com/

Enjoy! - Please let me know what you think. I love hearing back from you.

Wednesday, November 5, 2008

Grand Central Bread

Grand Central has great bread. A lot of local restaurants actually serve bread from this bakery. They also have bakeries, and deli's across town.

Here is the link to their breads listing all of the ingredients --> http://grandcentralbakery.com/breads.html
NOTE: There is one bread which does contain milk. The bread is NOT listed on this list, but
they will be able to tell you in the store. I will let you know once I know.


Out for breakfast in PDX - "Jam" in SE PDX on Hawthorne

We had breakfast yesterday at JAM. What a great little breakfast place. All foods are sustainable, local, etc. The jams are homemade....just a great find. Beware so, this place gets packed especially on the weekends. It opens at 7:30 AM so be there early.

But why - you may ask - do I write about this restaurant on the Galactosemia Blog...well, they offer VEGAN Blueberry pancakes, the Hashbrowns, eggs, etc. are all dairy free and of course they have soy milk. I am just excited to have another option now where the girls can eat pancakes (Besides "Cup & Saucer" and I love that place too). The kids breakfast menu includes eggs & bacon, vegan pancakes, and the bread...its all from Grand Central. And all breads from Grand Central is milk derivative free :)

Here is the information for JAM -Phone: (503) 234-4790
2239 Se Hawthorne Blvd, Portland, OR 97214. - It is located on the North corner of Hawthorne, between SE 22nd and SE 23rd Ave. (Right across from Grand Central on Hawthorne)...

Enjoy! - Let me know what you think...

Monday, November 3, 2008

Diet of CG in Germany

While in Germany we met with a couple of families in Berlin who both have kids with CG. I understand that families are urged to include aged cheeses in their diet thus eliminating the need to supplement calcium. I saw the list of cheeses which was ok'd after new testing and it includes cheeses which have been aged for 6 weeks or longer. Interesting, isn't it?

For us, we allow our oldest to eat Parmesan Reggiano. This we only allow at home. She has been eating Parmesano Reggiano on a regular basis now for almost 6 months and her levels did not increase. Note also, that we do not adjust our diet in any way before the draw. I am very interested however to see whether it increases her calcium level in any way...

Saturday, November 1, 2008

Halloween - "Trick or Treating" we had so much fun

We had SO much fun last night. For dinner we orderd pizza from Oasis Cafe, and then went out trick or treating. Both girls wanted to be cats this year. Cats with bright pink tails :) After dinner we went "Trick or Treating". I think this is first year that Alena really understands the concept of knocking on somebody's door, say "trick or treat" and then you get some candy. Maybe 4 is the magic number for that :)

Both girls had little jack-o-lanterns to collect their candy in. They just had so much fun digging through the bowls to take any type of candy that looked good to them. After an hour their bags were almost overflowing.....What fun!!!

Back home Alena and I sat down at the table. Alena sorted out all the candy containing milk (I had no idea that she knows exactly which candy she cannot eat....), trading it for candy she can eat. We did the same thing with Mia...That's how easy it was....

When I first found out that our girls have CG I would have NEVER thought it possible to go trick or treating, or thought that it would be no problem at all to just sit down with them and exchange the candy. And you know what? It is just that easy and no issue at all. Life is what you make of it!!!!

Happy Saturday to all....

P.S.: After a breakfast of pizza the girls are now indulging in their candy. Mmmmmhhhh...but then again, Halloween (or the day thereafter) is only once a year....

Friday, October 31, 2008

Halloween - Candy at School...so proud of my oldest...

Our oldest goes to Preschool 5 mornings a week. The school does a fantastic job managing the diet...Today she was in after care for an hour. When I picked her up she showed me a piece of Tootsie Roll and asked "Right, Mommy I cannot eat this candy?". Of course she canNOT eat Tootsie Rolls. I am just so proud of my 4 year old to 1.) confirm with me that its not OK to eat, 2.) hold on to the candy, 3.) give up the candy without any problems...WOW - I am not sure that I would have been able to do that at 4...

In any case, this also goes to show that it is just so important to educate the other adults around us to never give any food to kids they do not know...

Happy Halloween everyone.

Wednesday, October 29, 2008

Chocreale - Chocolate/Hazelnut spread just like Nutella

I grew up with Nutella. So every time I see Nutella in a store a get a little sad because the girls cannot eat it. Last year in Europe we discovered Chocoreale. It is a chocolate spread available in Hazelnut/chocolate, dark chocolate, and "milk" and chocolate. I brought a couple of jars back with me last year but not this year because it is so heavy.

I just found a store selling Chocoreale online in the States. It is quite expensive but so worth it for a treat every so often. The web-link to this vegan food store is http://www.veganessentials.com/index.php

FYI - I did not check out their entire selection but it does look great what they have to offer. I hope you and your kids will enjoy Chocoreale just as much as we do...

Sweet "cream" - whipable

Soya Too now also sells "whip able" cream in addition to the whip cream. I saw it last week at New Seasons Market. What a great addition when making cakes, etc. This will be so handy.

In Germany I saw this in stores and brought a couple of Tetra Packs with me just to have on hand...so glad to have found it here.

If you do not have this item available in your local grocery store don't worry. I just also found it online at

"The Vegan Store" - http://www.veganstore.com/822.html

they also carry the Alpro heavy cream., chocolates, dairy free cheeses..wow what a great selection on non-dairy foods...http://www.veganstore.com/ check it out looks great.

One disclaimer so - I have never bought food stuff from an online store...

Halloween - Trick or Treating what to do...

We are back stateside and I am finally somewhat getting caught up on everything including the blog.

This week is Halloween and we will go "Trick or Treating" with both girls. They both want to be cats this year...I think that this is the first year that I am feeling a little less anxious about this tradition. In past years I was always worried that our oldest would be upset to have to give up candy. Here is what we did last year...

- When we get home we exchange the "bad" candy to candy they both can eat
- Last year oldest was really excited about that because she knows that there is plenty of
candy containing "Kuhmilch" which she won't touch

There are so many candy choices out there for the girls - so this is what we have in the house (and also hand out)-

- Skittels (this is their absolute favorite)
- Dots
- Mike & Ike
- Junior Mints
- Starburst
- Nerds
- Twizzlers

I am sure there are other options, this is just what we have found so far. Candy obviously is not the ideal food, but what a treat for a little kid :)

Monday, September 15, 2008

We took the train to Berlin...food on the train

Last Thursday we took the train to Berlin. All together an almost 9 hour train trip...on the way up I packed plenty of food for the girls. Made Salami (safe, from the butcher in town where everything is w/o any milk sugar) sandwiches, brought cookies, gummibears. It was fantastic enough to eat and we did not need to worry at all :) In the afternoon an icecreamwoman was announced and she walked through the train offering ice cream. We of course were sure that she would have popsicles w/o any milk. Where we wrong...the girls were both so disappointed. Good thing there is also a bistro on the train where they sell Pringles. Normally not the food of choice, but since the girls were so sad...the Pringles were a welcome treat. They loved them and forgot about the ice cream.

On the trip back we were not as prepared. We had stayed in a Hotel in Berlin and were not able to make sandwiches. We had plenty of snacks so. At lunch time I went to the restaurant car asking whether they had food declarations. And they did!!! There was one meal (Asian Noodles) the girls could eat and it was great. The bottom line is that it is quite easy to travel by train not really worry about the food. I speak German, but I certainly would have also found the information if I only spoke English.

Have a great day everyone...more from our European adventure soon :)

Sunday, September 7, 2008

On vacation in Germany

...just a quick note. We are now in Germany on our annual vacation. The trip was uneventful. For the food issue, we are just glad we brought our own. We ordered the vegan meals for both girls, but the margarine contained whey and we really do not know about the bread...

Here in Germany we just always make sure to bring our own food along. Today we went swimming. The girls were (of course) hungry for a snack afterwards. All of the sausages in the bar contained lactose...good thing that there are always french fries (Pommes Frites) and we brought some sausage along...

Monday, September 1, 2008

Getting ready for the trip...

Alright so we are leaving for Germany tomorrow. I have packed the bags, gotten the letter from the girls physician, and just now also packed the food to carry on. The girls are just SO excited. And its not just because I packed Tings as a snack :) - One thing I still need to get is bread. Why, oh why do I always skimp on bread? Both girls just LOVE it...well or I may just get some bagels, but it will need to last until we are at our destination in Germany and that will take close to 20 hours...

Monday, August 25, 2008

Preparing for our trip to Europe...

We are getting ready for our annual trip to Europe. This means that I called the airline to make sure:-

  • Vegan meals are ordered for the girls
  • Lactose-free meal is ordered for the girls (I will actually give my meal to the girls if it seems OK)
  • Getting the doctors note to bring liquid on the plane
  • Buying enough bread (our girls LOVE bread), snacks for the plane rides and the lay-over in Frankfurt
  • Getting toys, crayons etc. for the trip...

I also spoke with a friend of mine in Germany who will make sure that the food at the hotel in Berlin will be OK for the girls.

Going overseas for us is clearly an advantage as I at least speak German. The European Galactosemia Association publishes lists in various languages which can be taken along if you plan to travel and do not speak the language. Here is the link to the "Diet-Passports"...http://www.galactosaemia.com/diet-passport/index.html

Happy Travels to all of you!

Tuesday, August 19, 2008

Trader Joe's

Have you shopped, or do you shop at Trader Joe's? I shop there off and on. Yesterday was an "on" day. So many great food finds...
  • Frozen Pizza without cheese and it is so good that the girls almost eat the entire pizza themselves :) ,
  • we are all big snackers I just bought "Organic Multiseed Cracker Sticks"...they are yummy
  • our emergency food for the kids "Breaded Chickenless Nuggets" NOTE: only the chickenless nuggets are OK
  • Vanilla Soymilk
  • Ricemilk
  • We also got their soy yogurt for the first time and both girls love it

There are obviously a lot more choices which are "safe" and without any milk sugar

Saturday, August 16, 2008

Tings...if you ever miss Cheetos

So sometimes there is are snacks in our house...one our children love are Tings. They look like Cheetos (minus the orange), taste a little like them, and are truly a really fun "safe" snack for them. More info under http://www.robscape.com/files/prod-tings.php Happy snacking everyone :)

Monday, August 11, 2008

Bring enough bread...we just learned :)

We are spending a long weekend in Government Camp. I prepared by bringing along the usual things such as bread, soy milk, earth balance, etc. Unfortunately however we did not bring enough bread. Seems like no big deal as there are a couple of small stores in Government Camp. What I did not expect was that ALL of the breads offered for sale contain either whey, dry milk, etc. WOW...I did see hot dog buns that are safe. But hot dog buns for breakfast? No, not an option...it is not a big deal as there were a couple of slices left for the girls but we definitively learned our lesson to always, always bring enough bread along on trips.

Saturday, August 9, 2008

Fubonn Asian Food Market

We just went to Fubonn Asia Food Market on SE 82nd Ave. in Portland. It is such a great place. We found so much fun foods the girls can eat and all without any dairy. Well of course there are still foods with milk sugar, but there are a ton of fun foods which do not have any milk sugar...For more info about Fubonn Asian Food Market check it out at http://www.fubonn.com/index.php

Sunday, August 3, 2008

Dare I say Fast Food...

Sometimes there is no way around it and let's be honest the kids love it. Both of our girls love an occasional hamburger and fries. Good thing we have Burgerville. The girls are so happy with their kids meal, the toy and Burgerville now even offers seasonal lemonades without any milk in them. The hamburgers are fine, so are the fries and a bunch of other items they offer. We really like Burgerville because their food is sustainable, and they are a local chain. I have contacted the administrative office numerous times before and they are always so helpful. They are really great. The breakdown on allergens and ingredients can be found online at

http://www.burgerville.com/Static/Files/Allergy_Table_Web_v2.pdf and also

Burgerville of course is not the only option, we just choose it for the occasional fast food "need" :) Other options I have looked into are

Out for Breakfast...

We took a day trip to the beach yesterday and before leaving town went out for a quick bite. A bakery was what we wanted so we went to Sweet Pea Bakery in South East Portland. We LOVE that place. All vegan and I swear you do not taste the difference. Cup cakes, cookies, doughnuts, beautiful cakes by the slice, even sandwiches...it is fantastic. We each had bagels with cream cheese. They offer plain or scallion/"bacon". Personally I love the scallion/"bacon" one. The best part so is that you never ever have to worry about milk being in any of their products. They also have soy, rice, almond, and hemp milk.

Oh, and if you have a party coming up Sweet Pea also makes cakes to order. Sheet cakes, cup cakes, cheese cake...you name it. We LOVE this place it....

To get the location of Sweet Pea go to http://www.sweetpeabaking.com/


Which kid does not love Pizza. Pizza a food I originally thought not possible for our kids. What ?on earth was I thinking?

Last week after camping we all felt like Pizza. The girls were in tub, the pizza delivery person rang the doorbell and both girls screamed with excitement "PIIIIIZZAAAAAA". Is there anything better than hearing your kids happy and excited?

This time we ordered from Oasis Pizza on Hawthorne. Sausage, onion, roasted red peppers and NO cheese. As usual it was fantastic, the girls ate a ton and truth be said you can really taste all the ingredients much better without the cheese :)

We like Pizza from any of these places - of course always order without cheese :)

Wednesday, July 30, 2008

We went camping...

We went camping a second time last weekend. Ron made his camping dinner of baked beans and hot dogs. The girls love it. Beans, and hot dogs. We also toasted marshmallows. We have not yet graduated to smores, but we think that it should be easy to do. I actually did buy Graham Crackers (I bought Nabisco Honey Maid brand), and brought some dark chocolate (Newman's Own brand) along. The girls loved the marshmallows toasted plain. Maybe next time we will have smores. We will let you know how they turn out :)

Cream Soups without Dairy

Do you ever feel like having cream soup, or need cream soup in a recipe? Imagine brand foods has a large selection of dairy free soups available in their line. We really like their soups and actually had the Cream Sweet Corn Soup today for lunch. Flavors include favorites like:-

- Creamy Chicken
- Creamy Sweet Corn
- Creamy Potato Leek
- Creamy Mushroom
- Creamy Broccoli
- Creamy Butternut Squash

these are just a few. More info under www.imaginefoods.com ..we have had them all and really like all of them. One thing to note so is that I usually add a little more salt and pepper to them


Friday, July 25, 2008

Chocolate Chip Cookies...

Which child (and adult) does not love Chocolate Chip Cookies? I know that both my girls just LOVE them. Today we are having a few of our friends over in the afternoon. So here I am baking chocolate chip cookies with the chocolate chips I just got at Whole Foods (they are Vegan Semi Sweet). The girls seem to love these as well :)

Here is my recipe

1 Cup softened Earth Balance
1 Cup granulated Sugar
1/2 Cup brown sugar
2 eggs
2 tsp Vanilla
1 tsp Salt (I usually use a little less as Earth Balance is only available salted)
2 1/3 Cups unsifted flour
1 tsp Baking Soda
1 - 12 ounce package of chocolate chips (app. 2 cups)

- Preheat oven to 375
- Combine first 5 ingredients
- Combine flour, salt, baking soda and mix under the creamed mixture
- Stir in chocolate chips

- Drop 1 teaspoon about 2 inches apart onto cookie sheet
- Bake for about 10 minutes

FYI - this recipe can easily be cut in half

We LOVE these cookies :)

Thursday, July 24, 2008

Deschutes Brewery Pub in Portland

Last week we took Alena out for lunch at the newly opened Deschutes Brewery Pub. What a GREAT experience...they bake ALL of the bread themselves so the server was quickly able to determine which buns were without any milk products. Alena wanted to eat a hamburger. The fries are not breaded so they are also fine, the hamburger bun does contain dairy so our sever suggested for either the hoagie roll, or the multi grain roll. We went with the hoagie roll and it was great. The kids menu also includes grilled salmon, pasta (on the menu with butter & parmesan but in other restaurants we always order with garlic & olive oil), hamburger...Here is the link to the Portland Pub. http://www.deschutesbrewery.com/BrewPub/Portland+Pub/default.aspx

It was a great experience and we surely will be back with both kids.

Tuesday, July 22, 2008

Dessert...Soy Delicious Frozen Dessert Cookie

We just bought the Soy Delicious Frozen Dessert Cookies for the first time. They are absolutely fantastic. Sweet, decadent, everything you want in a dessert plus without any milk. Isn't that great? I like Soy Delicious Ice Cream anyway, but the frozen cookies are truly decadent if you are looking for a little more. More info at www.soydelicious.com

Saturday, July 19, 2008

Pancakes for Breakfast

Is there a better way to start a great weekend than with a pancake breakfast? According to Alena it is the best...We made pancakes this morning. Alena made the batter, and I baked them. She was so excited that she wanted to try the first one right there in the kitchen :) Turns out that she almost ate the entire batch by herself. Mia Rose had one pancake, and Ron the other. We sprinkled some cinnamon and sugar on the pancake and rolled them up. Very, very yummy. They are quick and easy to make from scratch...the recipe is adapted from The Complete Vegetarian Cuisine, Revised and Updated, Rose Elliot, Pantheon Books.

Easy Pancakes
3/4 Cup Flour
1/2 Tsp Salt
2 Eggs
1/2 Cup Soy, rice, or other milk you like to use
1/2 Cup water
1-2 melted Earth Balance, or sunflower oil
Oil for frying

1. Mix all ingredients together. Mix well until all lumps are gone
2. Heat oil in frying pan
3. Add 1/4 Cup batter (or more if you like them thick) to pan; tip pan so that batter runs all over
the bottom of the pan
4. Turn when the top is set, and fry bottom up quickly
5. Serve right away

You can serve them with cinnamon and sugar, spread jelly on top of them and roll them up. Otherwise Maple syrup works well too.

Have a great weekend.

Tuesday, July 15, 2008

Vegan Chocolate Chips at Whole Foods Market

Mia and I went shopping yesterday at Whole Foods Market. You know what we found VEGAN Chocolate Chips, Whole Foods 365 brand...How fantastic is that? I am just so thrilled, we also found animal cookies, and a bunch more fun snacks for kids. All items are Whole Foods brand and they are delicious...

Friday, July 11, 2008

We did it :)

Yeah - the dreaded blood draw is over with...let's just keep our fingers crossed that the levels of both girls were good. We went Wednesday up to OHSU and Mia Rose (the little one) was sent first by her big sister. She is the hardest one because she just cries (better said SCREAMS on top of her lungs) the entire time. A woman came in to see if she could help out....Mia Rose has already completely forgotten about it. Alena keeps talking about the draw and how she does not want to go back. She is so good so...she sat on my lap for the draw and was a real trooper. She cried a tiny bit...but hey, if I could I would cry during a blood draw too.

This time they took a little more because both girls are also enrolled in a research study. If you are interested in the study you can check it out at http://genetics.web.emory.edu/studies/galactosemia/index.php.

Saturday, July 5, 2008

Not all is fun and games...the dredded draw

First the fun stuff - we had a great 4th. The flag cake turned out fantastic and everybody loved it. OK - we are still loving it b/c there is a little left...

The girls are due for a blood draw. I talked with my oldest about it a couple of weeks ago. "NO, NO, NO I do NOT want to go!!! It hurts! I don't like them hurting me. NO!!!!" This makes me feel so bad. She then asked why they had to get their blood drawn, and I explained that because of Galactosemia we need to make sure her levels are OK. Here is her response "NO!!! I do NOT want to Galatosemia!" Truth be said, I really was on the verge of tears. It makes me feel so bad, and in some bizarre way I feel so guilty of giving my precious little daughters a faulty gene. It is quite powerful and at that moment it overshadowed my general positive outlook. Don't get me wrong, it does not change my positive outlook but it just drove home the point that there are just additional things that need to be done in order to manage CG. - You may think "oh that's not a big deal", but to me its a huge deal. Like any parent I do not want my girls to have any pain whatsoever. I certainly will turn into the lioness doing everything to protect her cub. Yikes, I am getting off on a rant here...I know the draws are necessary, just procrastinated them a little. In any case the plan now is to go next week Wednesday. My oldest is in camp in the a.m., but she will just go a little late that day. Probably is better if she has an activity right after the draw anyways. Oh, and Alena (my oldest) already said...Mia (my little one) has to go first...

Friday, July 4, 2008

4th of July Flag cake

Yeah - it is the 4th of July. Every year I make a flag cake, some years I also make a "cheese" cake. This year is a flag cake only. Both girls helped me making it today, right now its baking in the oven. Let me tell you it just smells great :)

Here is the recipe for it. I FYI - I put it together from various cookbooks.

Flag cake Recipe

2-1/4 C flour
1-1/2 C Sugar
3 Tsp Baking Powder
1/4 Tsp Salt
1/2 C Earth Balance (or shortening, or other margarine)
1 C Plain soy, or rice milk
2 Eggs
2 Tsp Vanilla

- Preheat oven to 350 - grease a 9x13" pan
- Mix up all the dry ingredients
- Add margarine and soy milk and mix up well
- Add eggs, and vanilla. Beat until batter is nice and smooth
- Pour batter into greased baking pan
- Bake for 40 - 45 minutes

Second - Stripes
- Any flavor of red Jell-O
- Make according to directions

- Let cake cool down for at least 15 minutes
- Use a fork for put holes into the top of the cake (the Jell-O will flow into the holes)
- Pour and spread Jell-O over the cake
- Cover with foil and put in fridge for 3 - 4 hours

Third - Cream Cheese Frosting

8 oz. Package of Tofuti Cream Cheese
1/2 C Earth Balance
1 tsp Vanilla
3 C Powdered Sugar
1 TBL Soy milk

- Combine all ingredients and mix until smooth
- Spread over cake

Fourth - Decorate

1 pint Strawberries sliced in half (or more)
1 cup Blueberries (or more)

Decorate the cake with the fruit - blueberries to the left red to make the stripes...

This sounds like it is a ton of work...don't worry it is really, really easy just a bunch of steps and it is so worth it.

Happy 4th!

Saturday, June 28, 2008

Maccaroni and Cheese...the all time kid favorite :)

I just found this great box of dairy free Macaroni and Cheese. How exciting is that? - We had it for lunch today, I added on a few frozen peas and the girls LOVED it. Typical orange color, I bought the onex for kids and the pasta is all letters & numbers...how fun. It tasted amazingly good. For the milk add on I used regular plain soy milk.

So here is the info in case you are interested

Brand "Road's End Organics", Organic, Dairy Free 123'x Chreese - The company also has a website at www.chreese.com. It looks like they also have Nacho Chreese Dips, Chreese Packets, Gravy mixes, and other types of pasta & chreese.

Have a great day all its super hot today in PDX...

Wednesday, June 25, 2008

Cooking Camp...

My oldest daughter is in cooking camp this week. They made smoothies yesterday, and pizza today. I was debating for a long time weather or not to send her. In the end we figured that it is good for her to go. She knows that there she cannot eat foods that contain "Kuhmilch". For some odd reason, I was nervous that she may taste the food others could eat, or would be sad that she cannot eat exactly the same food as the other kids. But you know what? It is perfectly OK. She loves it, the other kids are great, and she does not feel left out. - For the smoothie I brought in Vanilla Whole Soy Yogurt, there was soy milk. For the pizza I got extra English Muffins which were safe, the sauce & pepperoni were also safe. As for now cheese...no problem. We generally eat pizza without cheese.

When we picked her up today at the end of camp she was SO excited. "Mommy, mommy I made pizza and ate it too...." If that does not make the Mommy heart sing then what will :)

Have a great rest of the day.

Saturday, June 21, 2008

Travel in Europe - eating out in Europe

It has become so much easier to shop in Europe thank's to the still fairly new EU Labeling Law. Milk, and its derivates now have to be declared. What a difference, now you can actually shop in regular grocery stores and no longer have to rely on health food stores. Don't get me wrong, I love health food stores, but sometimes especially when you are in a small town, there may not be a health food store, or if you are in a big city you have to find them...

As for restaurants we have found that people are (generally) really, really nice and there is ALWAYS something for the girls to eat. Stay away from ham, sausages, salami because you just never know and they most likely do not have the labels in the kitchen but here are some options. Of course, always ask to make sure its OK

  • Pasta with olive oil & garlic
  • Pizza with tuna, veggies (just make sure that the dough is w/o milk, and the sauce w/o any milk products)
  • Schnitzel (w/o gravy, no breading) and fries; any type of meat w/o breading
  • Salad --> get it without dressing as a lot of dressings in the Germanic world contain buttermilk, sour cream, etc.
  • Speck
  • Plain pasta

These are just a few things that we have found work for our kids. Keep in mind that coffee shops, etc. do generally not carry soy milk so you should always bring that along. Our kids are still small and I learn so much more every trip we take.

If you have any experience with travel I would love to hear from you...

Air travel

We go to Europe each year to visit family and friends. It is also great for the girls as we are raising them bilingual to be emerged and around German speaking kids. The travel and air plane foods are a little bit challenging. But surely not a reason to stay home. It ALL can be worked out. Here is what we do. We travel on Lufthansa and unfortunately we cannot order the kids meals as they are surely full of milk products.

  • I order special meals for the girls and myself. For the girls I order vegan, and for myself I order the lactose free meal => I have ordered a Kosher meal before was not ideal, but may be a great option for others
  • We bring on additional food, and soy milk for the girls. The food we bring is enough to last through the entire trip, as we have to either take another flight, or two more trains to arrive in Tuttlingen
  • We get a note from our pediatrician stating that our girls have CG and therefore need to bring their own food & drinks (for security)

So the trip is covered. If the girls want something once we arrive...well (hate to admit this) there is always McDonald's, or french fries, or fruit, or (if they are really hungry) schnitzel w/o the breading and w/o any gravy...We just really stay away from bread as I am too tired to find out whether its OK or not :)

Summer = BBQ time

Finally summer has arrived with all its glory :) Sunshine and BBQ time. We had the first hot dogs of the season out in our backyard. Just wanted to share a couple of things. I bought the buns at Trader Joe's and they are great. Just note that you canNOT buy the regular buns for hot dogs/hamburgers. The Multi Grain ones are without any milk derivative, and I actually think also better for you. We all like the buns.

I have to confess, that I have taken the hamburger buns along to restaurants. The buns at the restaurants we have been to generally all have whey, or they may not have the labels available. At some places we get the burgers on Pita (at all the McMenamin's restaurants for example), but it is a nice option to bring your own. We just get the burger with all the fixings and put it on the bun when the food arrives. The downside to bringing the bread along is that it can get messy (as I keep it in my purse), you need to carry it around with you, etc. It is however a nice option, as most hamburgers in general are "safe". We of course always ask just to make sure...

Tuesday, June 17, 2008

Quick Meals - Dare I say meals from the freezer...

So we all have it, right? Sometimes there is just not enough time to make a meal from scratch. I admit it, it happens. In the beginning I thought that there will never be quick dinners again, was I wrong :) I do need to clarify so, that generally I will cook from scratch. Generally means at least four days a week, but then I am flexible on the others Hard to admit it :)

I want to share with all of you some of the items we have found at Trader Joe's. The names on these items

- Frozen Sweet and Sour Chicken
- Fish Sticks
- Krinkle Potatoes
- Cheeseless Pizza --> my kids LOVE this pizza. The can almost eat the entire pizza by
themselves. They are 4 and 2 so its a lot of pizza :)
- There are some vegan simmer sauces and you just pop in your protein
- Tofutti Blintzes
- Orange Creamy Soy Ice Cream Bars

Check out the entire list of vegan items http://www.traderjoes.com/Attachments/Vegan.pdf Trader Joe's has.

Monday, June 9, 2008

When shopping...

By now I am familiar with most the products I buy on a regular basis. However I double check the items generally on the ingredient list really quickly. The items to watch out for become such second nature, that I can mostly spot them on the first glance. If however I see that an item (even if it is unfamiliar brand) is parve I never double check. It is kosher and to be pareve

"...Foods that contain no dairy or meat content are known as parev (also spelled pareve). Examples may be most drinks, all fruit, and raw vegetables.
Pareve food and drink can be consumed with either dairy or meat meals..."

How to change recipes to allow the foods in the diet

After initial diagnosis one of the big questions for me was how will I be able to cook. What items are available? After four years it has become second nature for me to make almost all of our recipes so that all four of us can eat them. I have always been a "make from scratch" cook so I did not have to reinvent the wheel for me, but had to change ingredients. The list below is what I have found is certainly not inclusive and I will add on with additional posts as I think of them :)

Recipe calls for Substitute
Butter Earth Balance Margarine (comes in a tub and in sticks which are
great for baking)
Margarine Earth Balance Margarine
Sour Cream Tofuti Sour Cream
Cream (sweet) Soy Creamer plain
Milk Soy, or rice milk (depending on the recipe I use non-sweet, or
Cream Cheese Tofuti Cream Cheese
Cheese Depending on the recipe I may leave it out, or (on pizza, or
lasagna) I use Vegan Cheese from Vegan Gourmet. It comes in 4
different kinds and really melts wonderful
Bread Crumbs Either Matzo Meal I use
Manischwitz brand
Buttermilk For one cup of milk you use, and 2 TBS Lemon Juice
Chocolate Chips I use Trader Joe's Chocolate Chips - they are Parve
Ice Cream - Rice or Soy ice cream - I like Soy Delicious while my husband really loves rice milk ice cream. The kids love either or :)
Yogurt - Soy Yogurt, we love Whole Soy Brand

Sunday, June 8, 2008

Great bakery in SE PDX - Sweet Pea Bakery

Sweet Pea Bakery is an all vegan bakery. Their stuff is outstanding and everything in their food case can be had (of course we only limit any type of milk sugar and not free galactose). Cup-cakes, donuts (on Wednesday, and Saturday only), bagels with yummy cream cheese (of course Tofuti), cakes, cakes made to order...you name it they have it. Last weekend my oldest and I got the cup-cake for the B-day party she was attending. She really wanted a bagel with Cream Cheese, and it was possible. It made me, and her so very happy :) - How glad we are to be leaving in Portland...

When you go to Sweet Pea. Have a bagel with their home made cream cheese on it. It is "bacon" scallion, and just so delicious. The cup cakes are outstanding. On the weekend they also serve brunch for $10. Of course everything is vegan, and free of any type of milk sugar. Doesn't that make your heart sing? It sure makes mine sing :)

Back after a long hiatus...

Wow its been a long time...no posts since January and it is early June. Life is good and the levels of the girls in February were just great :) We are so excited. A few things happened since January so. My oldest now has been invited to two birthday parties. That was a first for me, and I have to say it was not easy for me to figure this out. Why? Well, I do not want her to feel left out when other kids are having treats. The way I approached it was by calling the parent of the kids having the party and found out what they are serving. Both parties had cup-cakes. That was an easy one as I just made sure to have cup-cake for my daughter at the party.

At the second party all kids were decorating cup-cakes (including my daughter). I am so amazed at this four year old. Not being able to eat items other kids can have is no big deal. She asks whenever there is food whether it is OK, or not. WOW...and it was just understood that it is OK that she has a different cup-cake.

The kids have snack days at pre-school. For my daughter's day we brought Whole Soy Vanilla Yogurt (we just love that stuff), strawberries, and bunny crackers. The other kids asked whether this was yogurt everyone including my daughter can have. These kids really amazed me. They were so excited that my little could also have yogurt that day.

Galactosemia to me really has become a way of life. It is an opportunity, it can be a little challenging at times, but truth be said...after E.Coli Mengengitis, and Sepsis this is all a piece of cake. You can make life difficult, or you can make life easy and livable. You can make Galactosemia a center of your life, or a part of your life. For me (us) Galactosemia is not the center of our life, but a part of it. I think of all the great things that come from it. We meet great people, make friends with people that we would otherwise have no contact with. Last year we met (and stayed) with a family in Northern Italy who also has two kids with this disorder, we know a family in Berlin, and many more. What great opportunity...Of course there are hard parts to it. Blood draws are always the worst for me. I just feel so guilty about having given my girls this gene. And then of course when my oldest asks me why we need to go to the draws and she told me "I do not want to have Galactosemia"...Those are hard days bringing me to the verge of tears. Those days I must remember what to be grateful for...I have two beautiful, healthy children. The girls are bi-lingual, growing beautifully what else could we want.

Tuesday, January 22, 2008

Great - whipped Soy Cream

About a year ago I found this wonderful soy replacement for whipped cream at our grocery store. Both my kids, and both of us, love this stuff. It is called

"Soy Whip - Soyatoo!" It is made in Germany the company also has a website it is at www.soyatoo.com . I buy it here in PDX at New Seasons Market.

Monday, January 21, 2008

What is Galactosemia?

Galactosemia is a metabolic disorder affecting about 1:60,000. My husband and I are both carriers of this recessesive gene. We are the parents of two children with this disorder.

For those of you wondering...but what on earth is Galactosemia, below is the explanation from http://www.wikipedia.org/

Galactosemia is a rare genetic metabolic disorder which affects an
individual's ability to properly metabolize the sugar galactose.
Goppert first described the disease in 1917,[1] with its cause
as a defect in galactose metabolism being identified by a group led by Herman
in 1956.[2]
Its incidence is about 1 per 47,000 births (classic type). It is much rarer in Japan and much more common in Italy, specifically the traveler region. Galactosaemia is also very common within the Irish Traveller population. This is attributed to consanguinity within a relatively small gene pool...

Cause - Lactose in food (such as dairy products) is
broken down by the body into glucose and galactose.

In individuals with galactosemia, the enzymes needed for further metabolism of
galactose are severely diminished or missing entirely, leading to toxic levels
of galactose to build up in the blood, resulting in hepatomegaly (an enlarged liver), cirrhosis, renal failure, cataracts, and brain damage. Without treatment, mortality in infants with galactosemia is about 75%.
The 4th carbon on Galactose has an axial hydroxyl (-OH) group. This
causes Galactose to favor the open form as it is more stable than the closed
form. This leaves an aldehyde (O=CH-) group available to react with nucleophiles, particularly proteins which contain amino (-NH2) groups, in the body. This uncontrolled reactivity gives way to glycolation. Glycolation causes disease by altering the structure of proteins in ways that were not intended for biochemical processes.

Infants are now routinely screened for galactosemia in the United States, and the diagnosis is made while the person is still an infant.

The only treatment for classic galactosemia is eliminating lactose
and galactose from the diet. Even with an early diagnosis and a restricted diet,
however, some individuals with galactosemia experience long-term complications
such as speech difficulties, learning disabilities, neurological impairment (e.g. tremors, etc), and in girls, ovarian failure. These complications are treated if they appear in a manner similar to the way they would be treated in a non-galactosemic. Such complications have not been associated with Duarte galactosemia, and many individuals with Duarte galactosemia do not need to restrict their diet at all. Infants with classic galactosemia cannot be breast-fed due to lactose in human breast milk and are usually fed a soy-based formula.[3]

Galactosemia is sometimes confused with lactose intolerance, but galactosemia is a more serious condition. Lactose intolerant individuals have an acquired or inherited shortage of the enzyme lactase, and experience abdominal pains after ingesting dairy products, but no long-term effects. In contrast, a galactosemic individual who consumes galactose can cause permanent damage to their bodies.
Long term complication of galactosemia includes:
Speech deficits
Diminished bone

Premature ovarian

For a thorough
scientific overview of galactosemia, one can consult chapter 72 of OMMBID[4]. For
more online resources and references, see inborn error of

Source http://en.wikipedia.org/wiki/Galactosemia


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