It never hurts to ask for "custom made" food...

Can you actually use "custom made" with food?! Mmmmmh?! Well, its not a grammar blog so I will not worry about this now :)

I am getting ready for a girls weekend. The girls weekend is with my German girls friends and Ron will stay home with the little girlies. In any case, we will go on a fantastic hike this morning in the Columbia Gorge and I am responsible to bring the "hiking snack" for everyone. It is Pretzelbread from "My little t American Baker". So now finally I am getting to the Galactosemia point, right?! Alena, Mia Rose, and I just went to pick up the Pretzelbread. An entire bag of delicious smelling fresh bread...it is just so good, BUT it contains some butter. Neither of the girls can eat it and they LOVE Pretzelbread (in Germany they eat a Brezel every day :) ). I explained to them that it contains milk, and they each got a yummy fruit roll. Almost end of story...I ended up talking to the owner asking whether it is possible to get the bread w/o butter and the answer is YES!!! I am so excited. Here is the scoop, you have to order 24 each and give him at least 2 days advance notice. That's it. - 24 each sounds like a lot, but I think that it will be just fine to freeze them. When ready to eat I think it'll need a little brushing of water and some time in the oven. That's eat!!!

Here is the link to the bakery http://www.littletbaker.com/ . It is located right here in SE PDX on the corner of 26th and Division.

P.S.: I just remembered the proper word for food "special order" isn't it?!

What is in our fridge?!

I know its late, but this is really the topic I wanted to write about for a while now. What is in our fridge? A question I would have never asked myself if there were no dietary issues in the house. So really the question you may be wondering is do we keep any type of milk products in our fridge? And the answer is...yes, we do. We don't usually have milk, but often we have ice cream (in addition to the soy ice cream, etc.), and young cheeses in the fridge. Sometimes, this is rare so, Ron will buy some milk...I feel strongly that the girls must learn at home that there are foods that they cannot eat. They do not learn, if every food we keep in the fridge is OK for them to eat. It was not always like this in our house so...

...I did not allow ANY type of milk products in the house for the first 3 years of Alena's life. That summer we travelled to Northern Italy and met a family who also has two kids with CG. Their kids were 9 and 7 at the time. Beautiful kids. The family invited us to spend the night and we talked over a couple of bottles of wine. I was shocked when I found out that they keep regular, and soy milk in the house; Nutella and Chocoreale; Butter and Margarine; etc. Wow, I asked them, don't you ever worry...and this is where I learned to let go of it. I really was obsessed not to allow any milk in the house. Honestly, what would and what does happen if a mistake happens? This family taught us that kids learn at home best. In any case in the morning I almost had a heart attack. Here was the breakfast table set with butter & margarine; Nutella & Chocoreale; Yoghurt & Soy Yogurt; Milk & Soy Milk the kids sat at the table and you know what happened. Lisa & Philip showed Alena what she could eat. Not once, not once did they want anything else. It was the most normal thing. This was a moment of revelation for me...OK,OK its getting late, words are getting big. But it was...this was when it all became small. And yes, the glass is always, always, always half full. Good night!

Swimming and lots of fun...

We always looking for fun stuff to do on Wednesday afternoons. Sometimes we go to the Zoo, OMSI, or the Children Museum...and today we needed something different. Swimming - both girls love to swim, and it something we do almost daily when in Germany - the public pools here are nice, but for my taste they are overly chlorinated. However, The Kennedy School has a wonderful Soaking Pool. Nice size, and easy to manage both girls. - What fun we had. It is really, really warm just like a bathtub. Mia Rose actually did call it a bathtub :). It is outside which is nice since the water is so warm. Perfect for a lazy Wednesday afternoon. So what on earth does this have to do with Galactosemia. OK, OK not so much really but The Kennedy School also has a restaurant...see where I am going with this ;). In any case after our great soak the three of us ventured into the restaurant. We shared an order of Tater Tots with ketchup (it usually comes with Ranch), as well as a salad. What fun everyone had...swimming and some junk food :)

Sidenote: Tater Tots at The Kennedy School are OK, we do not like their fries.

Here is the link to the Kennedy School http://www.mcmenamins.com/index.php?loc=57&category=Location+Homepage

Lunch meat...part two "Ham"

I love ham :) and I actually used to be vegetarian, but this is really besides the point now isn't it :). In any case I love ham. Its great on sandwiches, great fried up with noodles, onions, maybe some tomato, maybe some Tofutti Sour-Cream...I think I am getting hungry. Again, I am trailing off subject...OK so let me talk about the topic "Ham". - I am sure you all know that many hams contain lactose. Not sure why they use it, but its just one of those food which we avoid when eating out, or ordering pizza. In Tuttlingen, my home town in Germany, there is one butcher who produces ham w/o any lactose. One !!! - Luckily I found ham by a couple of different producers which are lactose free.



- Applegate Black Forest Ham --> it is sooo... good http://www.applegatefarms.com/

- Niman Ranch Ham --> http://www.nimanranch.com/index.aspx; this is the ham I buy almost

every week. Its yummy...

- New Seasons also makes their own ham. Personally I am not so crazy about it

- Parma Cotto Ham if you want to splurge is also lactose free --> this is excellent

http://en.wikipedia.org/wiki/Parma_ham



Let me know if you like them. You know that I LOVE feedback :)

I have a question...

yes, I have a question. The question is concerning medical bracelets. Is anyone using medical bracelets? If so which ones, and have you found cute ones?

For years (its quite embarrassing) I have been thinking about getting medical bracelets for the girls. At least for Alena as she is old enough to leave it on. To-date so I have not found anything I liked and I know that she would not wear anything which is cute. So I go back and forth. Does she really need it? Well, OK we may get into an accident...I know chances are remote, but so are chances of having CG...Anyone have found anything cool?

I think a couple of years ago a read in the New York Times about a mother in Colorado who started stickers, bracelets, etc. for her highly allergic child.

I would appreciate any feedback. Thank you so much.

School, snacks, and dietaray "mistakes"

???What is this topic about. I admit the title is really not very good, but honestly right now I cannot come up with a better one. So let me tell you what this post is about.

Alena will be entering Kindergarten in the fall. This is a big decision on all levels. I think that there is a lot of pressure to pick the right school. A school were Alena can blossom, be confident and grow. I know academics are very important, but I also think that it is important to find a school which focuses on the "whole" child. We do have several options around so that is a good thing :) One part of the decision of course that we feel confident that the school is fully aware and capable of dealing with Alena's dietary needs i.e.: make sure that she has a treat when another kid brings something in. I am pretty comfortable that this will/is not a big deal as so many kids have allergies and dietary issues. I think that its important so that her future teacher(s) are interested to be educated about CG and won't single her out, or try to find issues and attempt to link it to CG.

The good thing about CG is that even if something goes wrong (I mean if she were to ingest some milk item) that it is not life threatening at this stage. Yes, it is not good but it will not threaten her life. 2007 was Alena's first year in preschool. In her class the kids took turns on bringing in snack. Alena's teacher was very interested in learning about CG, and her dietary needs. She understood that she could not have any milk products. But you know what happened, right? One day a parent brought in yogurt tubes, and by mistake Alena got some too. She of course was only 3 at the time and not as aware to avoid milk products as today...In any case, I got a frantic phone call from the teacher telling me what had happened and asking what she needed to do. Well, there really was nothing that needed to be done. It obviously was not a great situation, it should not have happened but it did. Alena was fine, her levels were fine...so I take comfort in knowing that should, by mistake, she eat something that's not OK she will not collapse. The teacher however from that point on forward was even more vigilant in making sure that the snacks Alena ate were OK for her. I always kept Tofutti cheese, crackers, pop sicles, etc. for her at school so that there was a substitute item for her. Alena learned in that situation however that there are foods she cannot eat and that its not a big deal....

Bottom line is to find a school we love, teachers that care, and remember that the sky is the limit for all of us :)

Lunch...lunch meat...Part One - Salami

I just thought about this. Something I also never really paid much attention to before I had kids, and before they went to school. - I am sure you are aware that a bunch of processed lunch meat (Wurst as we Germans like to call it) contains lactose. This is something I found out pretty early. I was however so disappointed to find out that most Salami (and I LOVE Salami) also contains milk. From what I understand milk is used in the manufacturing process to give it that nice tangy flavor. Luckily there are a few which are "safe" for the girls. Both kids love

• Coppa, or Capicola http://en.wikipedia.org/wiki/Coppa is delicious. When you buy it make sure that it is sliced really, really, really thin. Almost paper thing...fantastic. Here in PDX I buy it at Pastworks on Hawthorn. New Seasons has it as well but they never slice it thin enough for my taste. FYI - when searching for the wikipedia link I saw that there are a couple of online stores selling it
• Applegate has prepacked salamis which are all lactose free http://www.applegatefarms.com/

Do you know of any other salami's which are available that is good? Please let me know.

Next topic will be ham :)

Calcium...

What a topic! - Again, not so exciting I thought the zoo topic was much more thrilling right?! Calcium however is a topic we cannot avoid. Well, calcium and Vitamin D. I never used to think much about calcium and the importance of it in our diet. Those times are long gone ;) I think they ended when Alena was no longer interested in drinking her Isomil Advance (wow I cannot believe that I am actually no longer sure on the name of the formula for toddlers...). Our clinic prescribed calcium as soon as she was off formula. First she liked to drink soy milk. At 3-1/2 or so she started to prefer water. Luckily she ate/eats soy yogurt and loved/loves sparkling water which also contains some calcium. These days she is back "on" with chocolate soy milk, and OJ fortified with Calcium & Vitamin D.

Mia Rose on the other hand stopped taking her bottle much earlier. She liked soy milk in the beginning, but now she will only drink it sporadically...some chocolate soy milk maybe once or twice a week. Mia Rose however LOVES OJ. We go through at least 2 cartons a week, sometimes 3 and I do not even drink OJ....

Both girls take calcium supplements which also have Vitamin D in them. The really great thing is that they love their supplement so much that they will ask for it. The other good thing is that it makes me also take calcium supplement. So every morning, and evening Alena, Mia Rose & myself chow down on a delicious calcium supplement.

When we were in Europe this summer we met with a couple of families in Berlin. It was interesting to find out that they do not supplement calcium at all. You know why? Well, they do allow - and clinics in Europe encourage it - some aged cheeses...Isn't that interesting? I will write more on that topic another time...

A fun day at the Zoo

No school today so we took a trip to the Oregon Zoo. This is a fantastic Zoo and if you have not been you should come visit just for the Zoo :) http://www.oregonzoo.org/ Did you know that there is a baby elephant? The picture to the left is Alena and behind her is Sammy (Samundra) the baby elephant. Isn't he cute? In any case, we saw a lot of the baby elephant today, the ice bears, sea lions just great. Since was sunny and not so cold we also rode the train. OK - so what does this have to do with Galactosemia at all? Well nothing so far but as it happens often I did not pack lunch and we had a few snacks with us. We have eaten at the Zoo before but the girls were never able to eat the fries (at the upper restaurant, I am not so crazy about the Cafe). The kids menu includes animal cookies which are not OK, and the only meal that is OK is the hot dog W/O the bun. I am happy to report so that they now have a new recipe and they do not include milk :) So, hot dog, french fries, and Fanta...alright its not the healthy meal we all strive for but once in awhile...To make up for our lunch we are having stir fry with broccoli & carrots for dinner.

Tangerine Sherbet - fun activity and delicious

I like to read the New York Times online and last Sunday I saw this link to "Tangerine Sherbet". The recipe intrigued me plus we had a few tangerines that did not taste so yummy anymore left. I took a look at the video and thought that this could be a fun activity to do with the girls. In any case, last week we squeezed out the tangerines, heated the juice up with some sugar, cooled it, poured it through a strainer, added some plain Silk creamer...the next day we had tangerine sherbet for dessert. It was great.

Here is the link to the original recipe from the New York Times, if you have some time be sure to watch the video...it is really, really easy and fund at the same time
http://www.nytimes.com/2009/01/04/magazine/04food-t-001.html

This is my adapted version

- 2-1/4 lb. tangerine
- 1/2 cup sugar
- 1/4 tsp salt
- 1/2 cup plain Silk creamer

NOTE: I did omit the gelatin. I also do not have an ice cream maker so I followed the second set
of instructions from the Tiny Kitchen Video post.

It turned out great and we ate it out of the frozen tangerine halves...

Let me know if you try this one out. I think this can be adapted to be used with a ton of different fruit...