Saturday, February 28, 2009


Every week I buy some cookies for Alena's lunch. Have you seen the Dairy/Wheat free version of Newmans Own Organics ?
  1. Fig Newmans --> be sure to only get the Dairy/Wheat free version as the regular does contain milk
  2. Newmans O's --> they come in a variety of flavors. I have bought the "regular" version before for us. They also come in Dairy/Wheat free
  3. Alphabet's --> I usually buy the "regular" chocolate. This is also available in Dairy/Wheat free
  4. Champion Chip Cookies --> I buy the "regular" flavors. This is also available in Dairy/Wheat free
  5. Hermits --> I buy these - not available Dairy/Wheat free

Here is the link to the site You can not only take a look at the items available, but also see the ingredient list. We like all of them, of course homemade is even better...

Another good option are the "Snackimals" available from Barbara's Bakery. They come in a variety of flavors and you can also get them conveniently packaged in 2-1/8 oz. bags. Great to take along as a "just in case" type snack. All of the "Snackimals" are safe and they are all really good. I just saw that you can also order them online. Here is the link

Happy snacking everyone :)

Its not an allergy...

do you ever have to explain to your friends, family, or acquaintances that Galactosemia is NOT an allergy? It seems that people always seem to think that the girls have an allergy and do not realize that it is a metabolic disorder. Does it really matter if people think its an allergy vs. a metabolic disorder? Of course not, but it bugs me...I cannot explain why. The only explanation I have for feeling this way is because it seems that people go on to think "Oh, its just an allergy", "I knew the kid of XYZ who had this allergy and they outgrew it", etc. My personal favorite is when I was told "when I grew up kids ate everything and they never got sick. You are just overreacting..." - So when acquaintances say that to me I proceed to tell them that 1) no, its not an allergy, 2) we almost lost Alena and tell her story, 3) we need to have their eyes checked regularly, 4) blood tests, 5) potential problems... My question to myself is why, I explain CG in such detail? I know Ron would not do that. I certainly do not want anyone to feel sorry for my kids or us, because there is no reason for that; its also not that we want to be special (hey everyone is special)...I think - as I am writing this - it is because I want people to understand that there are such things as metabolic disorders and it cannot be taken lightly. Certainly allergies cannot be taken lightly either as may of them can be life threatening. The point is (at least think that's my point) that others must take dietary restrictions serious. Too often other adults see it as just an over-the-top reaction by a parent.

Thursday, February 26, 2009

Trust and School

Both of our girls go to school. They are there 2 full-days a week. Alena actually goes every day but stays twice a week the entire day. In any case, at Alena's school kids bring treats for birthdays and I make sure that there are always some treats in the freezer for her. So it really is no big deal. Well, today they are celebrating their 100th school day and the teacher is bringing in ice cream treats. And you know what? She is bringing in Tofutti Ice Cream bars so everyone can have one. Isn't that just so wonderful. It makes my heart sing that my girl will not have to be different from everyone else.

Mia Rose goes two full days a week. Unlike Alena for whom I pack a lunch, Mia Rose gets fed at her school. This is really a matter of trust. Both Ron and I checked out the school carefully, talked to the teachers. We trust them and truth be said if we would not trust them with Mia Rosie's food would we really want to leave her in their care? - Today I took another look at their daily lunch menu and I noticed that they actually offer cheese & cheese crackers to the kids. But you know what? They are only offered on the days when Mia Rose is not at school. Isn't that wonderful?

The point I want to make that it is important to trust the school and the people taking care of the kids. It is hard to hold on too tight to the kids, but I do not think that is good for the kids...

Have a great day.

Tuesday, February 24, 2009

Compound Pharmacies and Insurance coverage...

Luckily our girls are rarely sick. The last time we needed to get drugs was when New Seasons still had their Pharmacy. Well, the one year lucky streak just ran out as Mia Rosie has an ear infection and needs antibiotics. This time I wanted to try out a "new" pharmacy one from the "compounding list". In any case, I went to the Pharmacy explained what we needed (Galactosemia = no milk sugar, etc.) which was great. The pharmacist was very nice but he did not have the powder to compound the drug. He did however have the "stuff" to make the liquid. I then showed him my insurance card "Oh, no we do not take that insurance. We only take about three (!!!) different plans" he told me. I asked why not and he told me that the insurance companies just do not adequately reimburse for compounded drugs. He thought that most compounding pharmacies do not even take insurance. WOW!!! - Isn't that awful?! Yes, you can pay for it and make a claim to the insurance company in hopes that you won't need to fight it....

In our case it was not a problem. The pharmacist read through the entire product told me the brand and that it was fine. We then proceeded to our regular small pharmacy and everything was a-OK. The point of this however is that I find it awful that insurance companies refuse to pay a fair price for compounded drugs.

Sunday, February 22, 2009

Pictures of the purple cake, etc.

Finally the picture of Mia's fantastic Birthday cake, and the cake along with yummy cup cakes from Sweet Pea Bakery.  The cake was DELICIOUS, carrot... They do a fantastic job.  Sweet Pea Bakery, located in SE PDX. 

Trip preparation....

Lufthansa is currently having a great sale and I could not resist but buy tickets for us to go. We are leaving in mid March which is honestly much earlier than I would like to go, but the deal is way to good to let go. It will only be myself and the girls going. We usually are always on the non-stop flight from PDX to Frankfurt but this time our outbound will be through Chicago. The leg from Chicago to Frankfurt will also be served by United. The return is on the non-stop Lufthansa flight from Frankfurt back to PDX. I made the reservation online and Lufthansa offers "lactose free meals" on their air travel. We ordered it before and I find it better than the vegan meals. In any case, so I ordered the lactose free meals for the girls but called to double check that a) we have good seats, and b) the special meals are confirmed. Well, turns out that the Lufthansa meal is confirmed but not the United flight. I just got off the phone with United and you know what? United does not offer lactose free meals. Mmmmh, you can order "high fiber", "low fiber", "low fat", "low carb", etc but not one lactose free meal. Sure there is the kids meal, but that I am sure is full of cheese and other not-safe items....I ended up ordering for both girls a "Vegan" meal and will make sure to bring plenty of snacks. Or maybe another option - this is the very healthful ;) option - stop at McDonald's at O'Hare and get them each a Hamburger Happy Meal. That should fill them up and hopefully make them sleepy for the trip...

Thursday, February 19, 2009

Toby's Spread(s)

Have you ever tried Toby's Spreads? They are fantastic, vegan yummy treats. The girls love them. You dip veggies, spread it on bread, it is just fantastic - and you would never guess that it is vegan.

The spreads come in a variety of flavors. We like original, and the lite original version. I love the jalapeno version, but not so much the rest of my family. Check it out here

Happy snacking everyone :)

New RECALL - updated yesterday

FYI - yesterday I added information about a recall. Please remember that only recalls involving milk are listed on this blog, and US only.

Tuesday, February 17, 2009

Sometimes I feel guilty...

Does it sound like a strange topic to you? It does somewhat sound strange to me, but it is true however before I write on remember the glass is always, always, always half-full even if it sometimes does not seem that way. Am I getting to cryptic now?! Life is good...

Now on to my post...sometimes I feel just so terribly guilty about passing on this bad gene to my babies. I remember back when Mia Rose was born we were convinced that she does not have CG. Alena weighed only a little over 6 lbs. Mia Rose was well over 8-1/2 lbs.. Hey, probably babies with CG are smaller we thought. My OB put signs, labels all over Mia Rosies crib "ISOMIL ONLY" in huge, red letters. I was laughing inside "oh, yes let's just do this but I know she does not have CG...". They rushed the cord blood to California for testing, rushed everything and yes I there was no question in my head. We went home and then less than a week later my OBs office called. We were told that Mia Rose our little baby also had CG. I broke down, I cried, I was devastated...what had I done? I gave this bad gene also to my other baby. It was all my fault. - I was in shock, not about the diagnosis but about my reaction. I knew that everything would be OK, we know how to deal with this, but I was terrified. Terrified that my beautiful little baby also may develop E.Coli and become septic. Thankfully our pediatrician ran blood tests...

But why was I so devastated, feeling guilty? - My OB told me that its OK to be grieving because we all want for our kids to have no medical problems at all. Isn't that the truth? Having girls with CG is a little bit more challenging, I know there are plenty of women having babies w/CG but knowing that there more likely than not will be a problem makes it hard for me. That is when I feel guilty, guilty, guilty that it is my fault for passing this defective gene on...

Thank you for reading this. I feel so much better now that I have written this of my chest. Thank you...and yes, yes, yes I will say it again the glass is always half-full.

I am calling it a night and hopefully will be back more cheerful later on this week. And yes, I have not forgotten about pictures about the fantastic Birthday cake my baby had on Sunday.

Sunday, February 15, 2009

Birthday Party...

What is going on with me? I just seem so, so busy...hopefully things will slow down soon and I will be back daily or at least every other day ;)

Its Mia's Birthday today. Yeah! - She wanted a purple (yup you read right), purple Birthday cake. She ordered (OK it was me) a purple carrot cake - yum - from Sweet Pea Bakery a couple of weeks ago. Today is the big day and we picked up the cake, as well as the Prezelbread. - We decided to have breakfast at Sweet Pea Bakery and were surprised to find a brunch buffet. Its all vegan so everything is safe :) We had fantastic Biscuit & Gravy, caramelized bananas, potatoes, just great. - And the cake? - I will post the picture later. Its purple with pink writing, beautiful....The first guests are arriving. More late...Thnx for reading ;)

Sunday, February 8, 2009

A neighborhood walk and dinner...

I think we can smell spring :) Today we took a long, long neighborhood walk. Over to Portland Nursery, then to the Playground, after that we were just hungry and I really did not feel like cooking. - We originally wanted to walk to one of the Thai restaurant's but instead stopped at the Hawthrone Fish House (there is a second location on Corbett "Corbett Fish House"). It is a Wisconsin restaurant, lots of Packer paraphernalia and a bunch of different fish fry. The great thing here is that it is breaded with rice flour, and does not contain any milk. All their food is gluten free and food containing dairy is marked. Both Alena and Mia Rose liked especially their fries. I ate fish tacos...

For dessert they also offer a "Tofu cheesecake" with varying selections. Today's selection was chocolate. I think Alena ate half of the slice while Mia Rose was happy eating the rest of Alena's fries :)

Here is the link

Saturday, February 7, 2009

A nice walk and ice-cream treat...

I am back...after the girls weekend away I slowly getting back into the swing of things and yes this past week was super busy :)

This afternoon we all went on a great pseudo hike in Forest Park. Forest Park is fantastic an urban oasis. You would never imagine that you are in the midst of a city. You could totally get lost in it check it out at Great day for a hike. Mia Rose, of course, fell asleep in the car so we packed her in the Ergo while Alena hitched a ride on top of Ron's shoulder's. This was not quite how we had imagined the family hike so. We pictures both girls running, walking, etc. Finally Alena decided to walk and she had a ton of fun. The walk of course was much longer than she liked. So we bribed just sounds wrong :). What was the bribe...Ice-Cream. Which kid (and Mommy for that fact) does not like ice-cream?! It worked perfectly. Alena walked most of the way, and then we drove to get ice-cream.

Ice-cream you ask, in January? Ice-cream for the girls? - Oh YES!!! There are a couple of great Gelato places in town which always carry Sorbeto. Of course you must always ask about the vegan/milk free choices of the day. Today we went to "Mio Gelato" in the Pearl. They had five flavors the girls could eat. Lemon, Grapefruit, Raspberry, Pineapple, and Strawberries. Each girl had Strawberry AND Pineapple. YUM. - Ron and I of course also had gelato. Grapefruit/Pineapple sorbeto for me, and gelato for Ron. Great fun!

Mio Gelato has three locations in PDX. One in the Pearl, one on NW 23rd and a third in NE on Brazee.

  • Mio Gelato, 25 NW 11th AvePortland, OR 97209 - Phone: (503) 226-8002

  • Mio Gelato Caffe Italiano, 838 Nw 23rd Ave, Portland, OR 97210 - Phone: (503)241-9300

  • Mio Gelato Caffe Italiano, 1517 Ne Brazee St, Portland, - Phone (503)288-4800

Do you ever go out for ice-cream? Do you have great places where you live? Let me know! - I love to hear from you...


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