Saturday, January 31, 2009
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?!
Friday, January 30, 2009
...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!
Wednesday, January 28, 2009
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
Tuesday, January 27, 2009
- 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
Let me know if you like them. You know that I LOVE feedback :)
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.
Saturday, January 24, 2009
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 :)
Thursday, January 22, 2009
- 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 :)
Tuesday, January 20, 2009
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...
Monday, January 19, 2009
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.
Sunday, January 18, 2009
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
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...
Friday, January 16, 2009
Sometimes I really need to get over myself. Of course people will bring items my girls cannot have it's just life...and yes, it is no big deal not for the kids and now that I thought about it neither for me. I need to remind myself to keep things in perspective --> http://galactopdx.blogspot.com/2009/01/perpective.html
Thursday, January 15, 2009
You will need
- 1-3/4 skineless, boneless chicken thigs
- 1-1/2 Panko bread crumbs
- 2 tsp minced garlic (I usually put 2-3 cloves through the press)
- 2-3 tsp dried herbs (I alternate between Spice Hunter "Italian Seasoning" and "Poultry
- fresh herbs i.e.: Thyme, tarragon, or other herb you like - you can also add 2 Tbsp chopped
- Salt, pepper, and paprika (optional) to taste
- 6 Tbsp Dijon, or other good flavored mustard
- Preheat oven to 400 F
- Combine Panko bread crumbs, garlic, herbs, salt, pepper & paprika (if using) on a shallow plate
- Put mustard over chicken thigs and roll them until covered -> original recipe calls for using a pastry brush to paint mustard lightly on the chicken; we like to taste the mustard as well so I use a lot of it
- Roll the chicken in the Panko mixture until breaded
- Place chicken into a baking pan and bake app. 40 minutes.
They can be eaten hot or cold. - It makes a great meal, can be prepared ahead of time and no need to use a pan :) I usually serve rice with it as well as oven roasted veggies. This time of year I oven roast Brussels sprouts, and beets. Delicious. The girls really like the veggies as well...Note: This is recipe is not exact whatsoever. I generally just "slap" on the mustard on the chicken until they are all covered, for the bread crumbs I use as much is needed until all the thighs are completely covered and I use a lot of herbs b/c.
I found this recipe a couple of years ago in the New York Times who had adapted it from Gary Danko and I in return adapted the New York Times version.
If you make this, will you please let me know if you like it? Thank you.
I hope this is helpful...
Wednesday, January 14, 2009
Maybe its a German thing but I use bread crumbs frequently. Meatloaf, Fleischkuechle (German little flat meatballs), Schnitzel, breaded chicken, etc. No, we don't eat breaded food every day :). I choose the type of bread crumb depending upon the type of food. OK I will hold you no longer in suspense...
- Manischewitz, Matzo Meal Unsalted - it comes in a 16 oz container. I prefer the Matzo Meal
when I use the crumbs as a "glue" like in meatloaf, Fleischkuechle, etc.
- Panko (not sure if its breadcrumbs) any type but please remember to double check the label.
Trader Joe's sells a good version, Kikkoman is good, and Ian's has an great Panko breadcrumb
* I am not sure if you are familiar with Ian's but they have great convenience food
and according to their web site it is all milk sugar free (among other allergens).
We have had the fish sticks, and buffalo chicken before the girls liked it a lot...
Here is the link http://www.iansnaturalfoods.com/
Have a great day everyone. Please let me know what you think. Do you like this type of information? Is it helpful? Do you like the products?
P.S.: I almost forgot here is the link to Manischewitz http://www.manischewitz.com/
Monday, January 12, 2009
OK - we got home late from a play date this afternoon. So Taco it was for dinner. Quickly I put everything together, cut & scraped out the avocados, added the spice mix...but wait I had not read the ingredients. WOW - I realized that I really had not read the ingredients, but its only seasoning for guacamole...I looked at the ingredients, my heart beat faster, oh no...it reads "Organic Onions, Organic Nonfat Milk....". Good thing I had not mixed it all up and I was able to safe quite a bit of avocado for the girls. - What was I thinking to not read the label?, or even better question I usually make it myself why did I even want to buy a seasoning mix? Oh well, the only thing that pops in my head now is an old, old song http://www.youtube.com/watch?v=Nt5ShknVheg. I really dated myself now, right?!
The lesson I learned today is to never let my label reading guard down...
In any case tonight we had Taco's (what great fun food :) for dinner. Very fast, easy to make.
Sunday, January 11, 2009
She also got Vegan cookies which I have gotten before too. They are really, really good and come in a variety of flavors. Here is the info on the cookies
- Alternative Baking Company, Inc. - www.alternativebaking.com is the Web-site. Here in PDX we can buy the cookies at New Seasons. But listen up, I just looked at their Web-site and they DELIVER throughout the US...Isn't that great.
I would love to hear from you if you like these cookies as much as my girls do. Chocolate Chip is (of course) their favorite flavor...
Saturday, January 10, 2009
Here is the link to the Baghdad Theater & Pub http://www.mcmenamins.com/index.php?loc=9&id=176
Friday, January 9, 2009
This morning Ron, Mia Rosie and I went to the Bagel shop after we dropped Alena off at school. Mia Rose loves everything bagels, and also Tofuti cream cheese. I was certain that Noah's Bagel shop would not have Tofuti, again I was pleasantly surprised. FYI - in PDX only the Hawthorne Noah's carries Tofuti.
What does this have to do with Elmo soup? - Let me explain. When shopping have seen Dora the Explorer soups, and canned pasta, etc. All of that stuff always has some kind of milk sugar in it and of course are not OK. Mia Rose and I went shopping on Monday. Guess what she saw? Yup, Elmo soup. Of course she was all excited about it...and for once I did not have to say "no" as the soup does NOT contain any milk sugar (FYI - if you exclude tomatoes and other veggies this soup is not for you). Very, very exciting...here is the scoop
- Earth's Best, Organic Elmo Vegetable Soup
- Earth's Best, Organic Elmo Noodlemania Soup
- Earth's Best, Organic Elmo Tomato Soup
Comes in 14.5 oz. can - girls have not yet tried them :)
Thursday, January 8, 2009
Wednesday, January 7, 2009
Going back five years, Alena was readmitted to the hospital less than a week after she was born. We were given the strange diagnosis of Classic Galactosemia and were told that she may develop E. Coli Mengengitis. Less than 24 hours later she did develop E. Coli Mengengitis and had sepsis. She needed blood transfusions, she had a PIK line, she had a catheter and infusions, she weighed no more than 5-1/2 lbs. We did not know whether she would survive, and if so whether there was any damage to her brain. I was on my hands and knees in the hospital chapel begging for my baby to survive. Ron and I decided that if our baby suvives, managing a special diet will be a piece of cake. Here we are five years later. Alena IS completely health, she is thriving, and when thinking back to her first few weeks of life, managing the diet IS a piece of cake. Ron is right, the diet IS easy.
Tuesday, January 6, 2009
I admit that there are weeks when I do not plan, and those are the weeks I am more crabby :) This week so I planned, and everybody is happy at least so far....So what do we eat. Yesterday we had Veggie Stew. Great way to add all the veggies to the diet and the girls actually loved it.
Today we had oven baked Tilapia, mashed potatos, and sauteed greens w/garlic (kale). Alena loved the fish, and kale. Mia Rosie on the other hand was more of a mashed person today...
The fish really was yummy I adopted it from a recepie I found at www.makedinnereasy.com
- Panko bread crumbs
- Paprika, pepper, salt, italian seasoning
- Olive Oil
- Tilapia filet (we had two)
* Preheat oven to 400F
* Mix Panko bread crumbs w/spices - and put on a large shallow plate
* Brush fish with olive oil (I actually poured some on a plate and put the fish through it)
* Place fish in Panko crumbs and cover each side with crumbs
* Line a baking dish with aluminum foil add a little olive oil to it so entire surface is coated
* Put coated fish in baking dish and bake at 400 for 15 - 20 minutes
Alena LOVED it. I served it with Trader Joe's Tarter Sauce
- Cook potatoes
- Mash w/masher
- Add silk creamer, salt, bit of olive oil
- Olive Oil
- 1 bunch of Kale
* Chop garlic coarsely
* Heat Olive Oil in pan
* Add garlic and a pinch of salt
* Chop Kale (I used Lacinato Kale)
* Add Kale to garlic/Oil mixture. I start from the bottom up - once they get lighter green I add
the rest of the kale. Put lid on kale
--> It is done when it is lighter in color. We still like it a little crunchy...
Tomorrow it'll be chicken with yams...I will let you know if it turns out good...
I am so happy with our physician and dietitian. Our dietitian is really interested in Galactosemia and it is empowering to work with a professional who really cares. Our doc of course is outstanding. Incidentally he is the same doc who tracked us down when Alena's Newbornscreen came back positive for CG. We credit him and our pediatrician for saving her life. He has been such a great advocate for us and empowering us in every way. We are raising the girls bi-lingual and never once did he raise any concern about that. Today he was impressed with the speech of both girls, and also that there is no fuss about items they cannot eat. Makes me happy...
Sunday, January 4, 2009
2 cups flour
2 cups soy milk (for the sweet version I use vanilla, for the savory I use plain)
1 pinch salt
4 Tbsp Oil (Safflower, or Canola works well - do not use Olive Oil here)
- Mix the first 4 ingredients together and blend well
- --> If you want savory pancakes you can also mix in some chopped herbs
- Let rest for about 30 minutes
- Add the oil, mix in well
- Heat some oil in a pan and laddle some batter into the pan
- Swirl the batter around the pan so it is entirely covered
- Once the batter starts to firm a little add the sliced apples (if you make them sweet)
- --> The savory pancakes can be "filled" with chopped ham
- Turn when the lower side is completely baked and bake the top
We top the sweet apple pancakes with cinnamon and sugar.
The savory ones are good for dinner when served with a salad its a complete meal.
Happy Sunday to all :)
Friday, January 2, 2009
Happy 2nd day of 2009 everyone...
Thursday, January 1, 2009
If you have not had this pizza, try it. It is fantastic. It is available in the frozen pizza aisle at Trader Joe's and I think it is as good if not better as Amy's frozen pizza. And it is also more economical than Amy's :)
One caveat, the pizza does contain tomatoes which we allow.
Happy New Year to all!