Friday, July 30, 2010

Amazing levels, amazing visit to the Metabolic Clinic and cheeses

We have the results from the recent draw. Both girls have perfect levels!!! Did I mention, that dinner the night before the blood draw included lots of Parmeseano Regiano tomatoes and garbanzo beans?  Yay....I am so, so very excited that the levels came back perfect.

We had our metabolic appointment on Tuesday and I had to pick-up the girls early. Neither was excited about the appointment out of fear that there would be a pain involved... To mix things up a little bit and make it fun, we did not drive up to OHSU today, but took the aerial tram.  Both were excited to ride the tram...oh, and if you do not live in Portland and wonder what I am talking about here is the link to the aerial tram  The tram connects the upper and lower part of OHSU.  It is quite amazing, and on a clear day you can see Mt. Hood :)

Our visits was great as usual. It did however stand out, from previous visits because this time we got the green light to expand on cheeses for the girls. Our new dietitian was very prepared and brought along the abstract of a British research study concluding which cheeses the British deem as safe.  This fall  adding Gruyezer, Emmenthaler, and Grana Padano Parmesan to the Parmesiano Regiano.Yay!!! FYI - Jarlsberg is also on the list, but I however am not a great fan.... Kaesspaetzle (= home made egg noodles baked with Emmenthaler & Gruyezer topped with browned onions) will meet new friends :)

Jokes aside - I am so thrilled to finally get the official green light on these cheeses from our Metabolic Clinic.  Europeans have long advocated for Galactosemics to eat aged cheeses due to the calcium.  And I do admit, that both kids have eaten Emmenthaler, as well as Gruyezer before just in small amounts.  I limited the amounts as I was not certain how much would beOK....

What about you?  Do you allow, or eat aged cheeses?  Will you allow it?  Do you like it? Does it worry you?  I would love to hear from you!!!

Tuesday, July 27, 2010

Another great camping trip...

Last weekend we took another great camping trip.  Oh, how we love summer and the camping trips it brings :) In any case, last weekend we drove only 1-1/2 hrs east to Memaloose State Park in the Columbia Gorge.  It is one of the hottest spots in the Columbia Gorge and temperatures last weekend were in the low 90s....The highlight for the girlies was meeting J.R. Beaver in person. J.R. Beaver is the mascot of the Oregon State Parks Junior Ranger Program - here is a link to the official page Both Mia Rose and Alena were both in total aaahhh. "J.R. is my favorite" Mia Rose said...and both proudly put on their J.R. Beaver tattoo's immediately.

Besides meeting J.R. we went swimming in the Columbia River, cooked on the campfire, and the girlies roasted marshmallows.   Swimming in the Columbia and cooking on the campfire were a first for us.  Let's just say that both were amazing.  Swimming was so much fun, and our meal was the best we have ever had when camping.  What did we make you ask?  Well, we made Fajitas.  We brought our cast iron pan along, I chopped the onions, peppers, and Ron cooked it all one by one on the campfire.  Topped it with lime juice, and served it with corn tortillas.  That was a true winner :)

Here are some pictures....

Ron putting up our tent
Alena is enjoying the water
Ron and Alena swimming

Here we are meeting J.R. Beaver
Alena, J.R. Beaver, Mia Rose, and me.  
The four of us :)

Friday, July 23, 2010

Some pictures - summer 2010, Cape Lookout State Park

Camping at Cape Lookout State Park in Oregon - Ron is playing guitar while the girlies are roasting marshmallows....

                                   The marshmallows are roasting for the little girls from P-Town :)

Yoga at the beach...what could be better - well, besides roasted marshmallows

Ron and Mia Rose are visiting the water....

                                        Waiting for the sunset....

Mia Rose is loving bacon....

                                                        We are having fun....

Thursday, July 22, 2010

Is everyone having a great summer?

Are you all having a great summer so far?  I would love to hear what you are doing...Both girls have been in camp a couple of days a week, and we have been camping.  Alena just told me today, that her favorite part about summer is to go camping.  What about you?

Thursday, July 15, 2010


The cream for the blood draw turned out to be a huge success :) Both
girls were initially very suspicious of the cream. Well, neither knew
what "numb" meant. Alena went first for the draw and did not feel a
thing. Same thing for Mia Rose...yay!!!

Afterwards we had lunch at the Farmer's Market where both girls ate
the best Italian Sausages, followed by crafts at a booth for kids, and
ended the day with manicures. Alena asked later "Mama, can we go have
a blood draw soon again?" Who knew

Have a happy day everybody!

Wednesday, July 14, 2010

It's the night before the blood draw...

Doesn't time just fly like crazy.  I cannot belive that it is already time for our new blood draw.  Alena has now for weeks been dreaming about getting her blood drawn.  She wakes up with excitment and tells me that "I did not cry at all". Alena and Mia Rose both asked me to tell them exactly the night before we go up to the hill for the draw.  Well, tonight is the night and let me tell you it did not go well.  Alena worked herself up in such a frenzy that she did not want to go to bed.  Mia Rosie on the other hand was fine, but could not go to sleep, which in return led to a total - and I do mean total - meltdown. 

Tomorrow, however should be different because they are getting the anesthtic cream for the first time.  Fingers crossed that their veins won't narrow, and that the phlobotomist will be able to draw....updates to follow.

Friday, July 2, 2010

Alena took some photograph's

The other day, Alena decided to take some photograph's while we were waiting in the car....

Shoe and foot :)

                                                                    View outside the window

                                                           Self portrait  :)

Thursday, July 1, 2010

Recall - undeclared MILK in FUMA CUSTARD PIE

DOMEGA NY INTERNATIONAL CO., LTD Issues Allergy Alert on Undeclared Milk Powder in FUMA CUSTARD PIE
Thu, 01 Jul 2010 12:29:00 -0500

DOMEGA NY INTERNATIONAL CO. LTD 4820 2nd AVE BROOKLYN NY 11232 is recalling FUMA CUSTARD PIE because it may contain undeclared milk powder. Consumers who are allergic to milk powder may run the risk of serious or life-threatening allergic reactions if they consume this product.       

Potlucks I no longer fear you...

Yay - summer has finally arrived in the Pacific Northwest.  It's the time packed with parties, potlucks, picnics and all that fun.

I have to admit that neither Potlucks nor catered outdoor picnics used to be my favorite event.  No, I certainly do no dislike the outdoors - quite different I love being outdoors - but I have always been worried about the food options for the girls. Truth be said, so that is not the way I believe we should live. Exclude ourselves because I worry that there may a ton of foods the girlies cannot eat...That is not what I believe in. But you know what?  That is what I was doing.  I got frustrated because at catered lunches people are generally not aware of Allergens.  Much less even at potlucks.  People don't think about allergens.  And you know what?  I would not be thinking about them either - it was something I never understood in my "Pre Galactosemia" life.

In any case, have come up with some strategies to deal with these fun events.  No different from any of our other strategies they are:-

For catered events I try to

- find out as much as possible about the menu up front,
- call the company to discuss allergens
- call the organizers to find out about desserts
- are there dairy free options? Will we have to bring alternatives?

If all fails I bring food for the girls but that is really the last I want to do.  I want the kids to feel included and not different.
For Potlucks - and they are much harder - the strategy is to

- call the organizer to determine what types of food people will be bringing
- ask organizer to have foods marked with ingredients used - and I mention the allergen issue.
  • I know that sounds like a lot to ask for - but just basic ingredients.  I certainly do not ask that recepies be amended just for us...I am not that self centered. Well at least, I try not to be ...
For potlucks I also make sure to bring at least a couple of foods the girls can have - just to be on the safe side - such as potato salad, sausage, cuties, etc.

Now, I feel prepared and am happy to say "Potluck I no longer fear you"!!!

How do you deal with this?  I would love to hear from you!

Happy Summer to all of you!!!

Cervelat recalled due to undeclared Milk

Texas Firm Recalls Cervelat Sausage Product due to an Undeclared Allergen
Wed, 30 Jun 2010 18:42:50 -0500

San Antonio Packing Company, a San Antonio, Texas, establishment, is recalling approximately 9,408 lbs. of Cervelat Summer Sausage because it may contain an undeclared allergen, milk.       


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