Tuesday, December 30, 2008
Happy pie eating to all :)
Sunday, December 28, 2008
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
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
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
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
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 :)
Sunday, December 21, 2008
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
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
- 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
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
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 :)
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
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
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
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
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
Thursday, November 20, 2008
Saturday, November 15, 2008
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...
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
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
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
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
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.
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
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
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
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
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...
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...
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)
- Mike & Ike
- Junior Mints
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
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
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
Monday, August 25, 2008
- 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
- 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
- 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
Monday, August 11, 2008
Saturday, August 9, 2008
Sunday, August 3, 2008
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
- McDonalds Hamburgers are also OK - here is the link to their allergen page http://www.mcdonalds.com/app_controller.nutrition.categories.ingredients.index.html
- Wendy's is also OK - here is the link http://www.wendys.com/food/pdf/us/nutrition.pdf
- Burger King is also OK - http://www.bk.com/#menu=3,2,-1 this site let's you sort according to allergen which is a very nice feature
- Subway also offers a bunch of different options that are OK http://subway.com/subwayroot/MenuNutrition/Nutrition/pdf/AllergenChart.pdf
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/
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
- 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
Here is my recipe
1 Cup softened Earth Balance
1 Cup granulated Sugar
1/2 Cup brown sugar
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
It was a great experience and we surely will be back with both kids.
Tuesday, July 22, 2008
Saturday, July 19, 2008
3/4 Cup Flour
1/2 Tsp Salt
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
Friday, July 11, 2008
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
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
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 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.
Saturday, June 28, 2008
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
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
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.
- 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...
- 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 :)
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
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
Pareve food and drink can be consumed with either dairy or meat meals..."
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
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
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 :)
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
"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
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, with its cause
as a defect in galactose metabolism being identified by a group led by Herman
Kalckar in 1956.
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.
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:
For a thorough
scientific overview of galactosemia, one can consult chapter 72 of OMMBID. For
more online resources and references, see inborn error of