Monday, June 29, 2009

A good day turns into a bad day and then again good...

What a rollercoaster day we had yesterday...I am still all shaken up. Yesterday we wanted to go hiking up by the mountain. Alena seemed a little cranky but otherwise OK so we figured that a nap on the one hour car ride would be good for her. Both girls napped, we had beautiful weather. Alena slept, as she often does in the car, her head back and her mouth wide open. As we got closer to our destination, Ron noticed that she was in her backseat with her eyes and her mouth wide open. I immediatley checked on her and she started to talk to me about the rides at Oak's Park the previous day. She seemed a little off, but I figured that she was just sleeping with open eyes. In any case we continued on for another five minutes, stopped and a couple of minutes later when I looked at Alena she again had her eyes, and her mouth wide open. Head tileted backwards, and then I could not get her to respond to me at ALL. It was horrible!!! We stopped the car, I pulled her out of her car seat...thought maybe she was dehydrated so I offered her water. She refused it, but her mouth stayed wide open, just like her eyes. I poured water in her mouth, she seemed to slightly chew but it all flowed back out of her mouth. We tried to stand her up, but she just flopped to the side...I put her on my lap in the car and again, her body just flopped back. It was SO HORRIFYING...somebody called 911 and the firefighters came w/i what seemed like an eternity. I knew she was breathing, but had NO IDEA what was going on. I poured water on her, still no response. I told her about shots, no protest. Ron remembers that she did talk a little bit, very softly...I just do not remember that. I was so worried that we would loose her, it was so, so very scary...The firefighters were wonderful. They took her vitals and they were fine. They calmed us down, figured out that she had a temperature, and still Alena was not responsive. When the ambulance came, Alena started shaking which was probably a reaction to her fever...the ambulance took Alena and me to Emmanuel Childrens Hospital back in Portland. Ron followed with Mia Rose in the car. Her vitals were fine, her temperature was around 102 F. She did respond to look at the paramedic, and with single words, but still was not herself. Finally, about ten minutes away from Emmanuel, 45 minutes into the trip back) she started to become herself again. At the hospital they took labs, as well as a cat scan...the GREAT THING is that everything came back OK. Cat scan was clear, labs showed that she was a little bit deydrated, and they are making the assumption that she had a febrile seizure. We don't know for sure so. I am just so glad, that she is OK. On that mountain, I just saw my whole life come to a halt...

Now we have to figure out what happened. I did call metabolics, and also her pediatrician. It probably has nothing to do with CG, but what was this? I really do not want to ever experience something like that was so scary. And I am not sure, if I can venture away from the metro area for a while ...

Sunday, June 28, 2009

Fun Day...

Finally it feels like summer here in Portland. We had such a fun day yesterday. Have I ever mentioned that the girls LOVE hamburgers from Burgerville?! And yes, I am NOT crazy about fast food at all...but oh well, I feel that Burgerville is at least a little bit better. At least we know where the food comes from. In any case, so yesterday we took the girls to Burgerville for Hamburgers, and then we went on a really fun hike (Ok more or less a walk, but for the girls its a hike ;) at Oaks Bottom Wildlife Refuge. It is such a great little hike in the middle of the city. Blue Herons, Osprey, frogs, fantastic AND to top it off, there is even a destination to it. Oh yes, Oaks Park Amusement Park....Alena loved it. She went on a few rides, and then we all rode the train. After the park we hiked back to our car. Both girls were by that time really tired of walking, so it was Ron and I hiking...and how did we end the day? Can you guess it? Yes......OK we went to Ben & Jerry for yummy lemon sorbet.

P.S.: Any point to this...of course, you know that not once I thought about the dietary issue?!

Friday, June 26, 2009

It's time

We have been on summer break for a couple of weeks now. School for Alena is out, Mia Rosie's little preschool however continues through the entire year. In order to for me to work a couple of days a week, Alena goes to camp on the two days Mia Rosie is in school. It actually works out very well. The best part is that camp is at Alena's preschool and everybody is aware of her CG. Of course I double checked with all the teachers as we have not met some of them before, but then I noticed this big statement at the end of the daily list stating that Alena cannot eat anything with milk in it, and eats her own crackers, etc. For snack-time I brought in a box of Annie's Graham Bunny Crackers (and which child does not love them ;) ) and we are good to go. Five years ago, I would have never thought that managing the girls diet will become so second nature to me, and that I won't be all anxietal about it anymore...It called growth, right :)

I do not recall if I shared the info on Annie's bunny crackers before; I just have the worst allergies which is now turning into a miserable cold. So I am actually feeling very sorry for myself...ha, ha, ha... OK - enough about me. Here is the link to Annie's The flavors available include chocolate, graham, cinnamon, and chocolate chip. They are all very tasty. The girls love the shape and taste of them :) Happy snacking...

What are you doing this summer? I would love to hear from you.

Wednesday, June 24, 2009

I just updated the recall panel.

So I just updated the side panel "recalls" with the detailed pertinent information about the last two recalls which I just uploaded to the blog. I hope you find the information helpful...Please let me know. I really, really, really love to get feedback. Oh, and does anyone know what happened to the fun "immediate response" buttons (I am sure there is a much more official term for it). I added the regular ones available from Blogger, but they are just not as fun as the others...

Tortillia Chip Recall

This recall was just released. Pls click on link for details

La Mexicana, Inc. Issues Allergy Alert on Undeclared Milk and Milk Products in Tortilla Chips
Tue, 23 Jun 2009 21:18:00 -0500

La Mexicana, Inc., of Seattle, Washington, is recalling Solena Tortilla Chips with a June 03, 2009 code date, because they may contain undeclared milk and milk products

Thursday, June 18, 2009

Pet Peeve...

In the Austrian CG Journal there was an article by a young woman living with CG. The article was about a vacation she took with her family and the dietary issue associated with eating out. A really wonderful, inspiring article...really wonderful. The last sentence however stated something to the effect that "it is wonderful how others deal with people with disabilities...". OK so this is my pet peeve. I do not think of my girls as kids with living with a disability, handicapped children, sick children, children with a disease...I do not want them to think of themselves like that. I want my children to be confident, and feel empowered. Labelling them as "sick" just achieves the opposite. They are perfectly healthy kids. Yes, they lack an enzyme and yes, there can be bad side effects associated with CG, but they are certainly not sick...

Maybe it is a European thing. I noticed it also in Germany. We met with a couple of different parents who have kids with CG. I was shocked to hear that they have "disability passes" for the kids and themselves. The reason for it is that there are tax advantages, and entrance fees to zoos, etc. get waived. But is that a valid reason to label your child as disabled??? - I could rant on about that for a long time, but will get off my soap box now. Please let me know what you think...

Oh, and sorry if I am ranting. I feel that my writing "mojo"still is not completely back ;)))

Recall SMITH'S TEA With LEMON gallon six container

This recall was just released. The sidebar will be updated later. Pls let me know how you like this format for recall info. Thank you ;)

Smith Dairy Announces Voluntary Recall on SMITH'S Tea with Lemon in Gallon Size Only
Tue, 16 Jun 2009 18:55:00 -0500

Smith Dairy Products Company today announced a voluntary recall on SMITH'S Tea with Lemon in gallon size, lot no. 07/07/09

Wednesday, June 17, 2009

A fast, easy and quick dinner...chicken, asparagus and couscous

Yesterday my head was spinning. This week I have not been able to plan any of our dinner which makes life so much harder for me. So why do have I not planned??? Good question...In any case, I work on Tuesdays and Thursdays while both girls are in school. So I generally do not have time to go shopping during the day, nor think about dinner. What made matters worse yesterday was that instead of having the night off, I still had a business dinner meeting...I felt the pinch and got really, really stressed. In addition to many processed foods not being safe for the girls, I just do not like to feed my family a lot of processed foods. Ron, saved the day by suggesting the Panko Breaded Chicken. Yeah, I have not made it in quite a while and it is just so, so, so very quick, easy and delicious. Here is the link to the recipe Honestly, it took me about ten minutes to coat the chicken with mustard (I actually left the chicken on the paper, slapped on the mustard and rubbed the mustard over the chicken; then I just breaded it and put it in the baking pan), and coat it with Panko Crumbs. Preheat the oven, pop in the chicken and 40 minutes later dinner is ready. OK - so fear not, I did not just feed the family chicken...asparagus and couscous were there as well. I just baked the asparagus in the oven. Quite delicious - here is how I make it

Green Asparagus
Salt (I use Kosher)
Olive Oil

- Snap ends of asparagus
- Put asparagus in baking dish (best in single layer - but two layers are OK)
- Drizzle with ample olive oil and toss
- Sprinkle with salt and toss

I bake the asparagus for about 15 minutes (the last 15 minutes with the chicken) at 400 F. Just check it until you like it...Delicious.

And with all of that there was couscous which is one of my easy stand by sides...and you know what? The entire family loved dinner last night. There was not one piece of chicken, or asparagus left over...

Tuesday, June 16, 2009

Playdate without Mommy...

OK so I know this has been long, long overdue but Alena just went on her first play date all by herself. I really do not keep her on a "short leash" ;) generally however it just works out that Mia Rose and I just come along. The kids play and mom's usually hang out...Well, a couple of weeks ago I just dropped her off at a friends house. Alena actually told me "you go mommy, no mia, and no papa. Just me!" - She obviously goes to school without me, so it does make sense that she wants to be all by is empowering, right?

Here is how I think we are just a tiny bit different. Before hand, I told the mother of Alena's friend that she has CG and therefore needs to avoid all types of milk sugar. In addition, I also gave a little breakdown as well as a link to the blog entry "about Galactosemia". I certainly do not want to scare parents about it, but need to make them aware...The mother and I talked about that PB&J sandwiches would be great for both kids. I brought along a couple slices of bread for Alena. For treats I made Chocolate Chip Cookies for everybody...the play date was great fun for everybody. The bottom line so is, that there is no need to shy away from play dates or be afraid of them. Its all in the preparation, and of course the child has to be aware of the foods they cannot have. Alena now always asks...

Have a great day everybody.

Friday, June 12, 2009

Lemon sorbet at Ben & Jerry's

Mia Rose is enjoying some lemon sorbet at Ben&Jerry's after Alena's big play :) - Did I mention that the sugar cone is vegan....

Thursday, June 11, 2009

Frozen buffalowings recall due to undeclared milk

I am posting this to the regular posts and will update the sidebar later. Pls let me know how you like this format
Wed, 10 Jun 2009 22:27:52 -0500

Pilgrim's Pride Corp., a Mount Pleasant, Texas, establishment, is recalling approximately 608,188 pounds of frozen poultry products because they may contain the undeclared allergens milk, soy, and wheat.

Wednesday, June 10, 2009

Eating popsicles after the fun run

Here is a picture of the girls with a couple of Alena's friends from school after the "Fun Run"...

The Fun Run and the treat...

Alena's school conducts a fundraiser every year. It is called the "The Fun Run" and each child is asked to raise $20 which goes to the scholarship fund of the school. Every class in the school get 1/2 hour in the gym for the run. The school is quite large so it is a two day event. And what, you may wonder, is a "Fun Run"...It is an obstacle course which the teacher's set up. Hopscotch, boxes to climb underneath, hula hoops to climb through, jumping, etc. Alena had sooo...much fun. I did not count how many laps she ran, but she pretty much ran non-stop for the entire time. Siblings were allowed to join for the last lap. Needless to say, that Mia Rose was sooo...excited.

After the 1/2 hour everybody got a treat and you know what? They were pop sickles which the girls could have as well. I don't think I have to tell you how happy that made me...In school Galactosemia really turns out to be NO BIG DEAL. Who would have thought? I certainly would not have believed it. I was just so happy that the girls did not to be singled out, and could join everybody else. The point of this post? Well, I would have never, ever thought to be able to integrate our kids "just like that" and I am just so thrilled that it is possible. Life is great :)))

Saturday, June 6, 2009

Do you like Rhubarb? - Rhubarb-Meringue Cake/Pie

I love spring, and early summer. One reason is that I just love rhubarb, or Rhabarber as it is called in German. The tartness combined with some sugar...yum!!! I found this fantastic recipe for a "Rhubarb-Meringue Cake" on a German blog (link is below). Cake is, at least in my opinion, the better description...

125 GRAM of Earth Balance, or other vegan margarine
125 GRAM of fine sugar
1 Egg
2 Egg yolks
50 GRAM corn starch
125 GRAM Cup flower
1 teaspoon baking powder

750 GRAM Rhubarb

2 Egg white
200 GRAM Cup of sugar
1 teaspoon of lemon juice (I have omitted this before)
1 pinch of Salt

Preheat oven to about 350 degrees F (170 Celsius)

- Peel rhubarb and cut into about 1/2 inch long pieces
- Mix up batter
- Pour batter into baking form
- Top batter with rhubarb

*** Bake for about 20 - 30 minutes until the dough is slightly golden

- Beat Egg White with salt to egg snow, add lemon juice, and sugar very slowly
- Spread egg white mixture (it should be very firm) over the baked cake (rhubarb)
- Bake for another 20 - 30 minutes until meringue turns a little brown.

I found this recipe on a German Blog...take a look at the pictures. It tastes just as great as the pictures look...

Please let me know if you like this recipe :) - Happy baking...

Thursday, June 4, 2009

New frontier...

OK so the title does not really match the frontier we have passed...Are you curious yet?! :) So, yesterday we ordered pizza for dinner. No big deal, right? Well, here is it is...we ordered one pizza half with cheese & the other without cheese for the girls. Honestly, I felt like such a daredevil ;))). It sounds like not much, or maybe too much...but it all worked out great. There was no cheese on the girls slices, and let me tell you Alena made sure that there was no cheese on her slice. It was great!!! And yes, we often order the entire pizza w/o cheese but yesterday was just a new try...

Happy Thursday everybody...

Wednesday, June 3, 2009

Are you travelling to Europe this summer?

Do you have any plans to travel to Europe this summer? If so, the Europeans just added more great information. The new documents include information on where to purchase products in a given country, the words to be on the lookout for i.e.: "Molke" German for "whey", who to talk to, and information about product available in large stores, bakers, etc. I just checked the link and additional information is available for Austria, Germany, and Spain. Here is the link

Happy travels :)))

Great news from Europe...

A few months ago I posted the great news received from the Austrian group that one of its adult Galactosemics was pregnant with her first child. The baby was born in November and both he as well as his mom are doing great. His mom is nursing him :)

Other great news comes from

- France, a Galactosemia Mom gave birth she is also nursing her baby
- Great Britain, a woman who is a Galactosemia is pregnant

I am so excited to share this...

Tuesday, June 2, 2009

Ice cream and summer fun in Portland...

Finally its warm and sunny...Yesterday we spent a fun afternoon with our friends. We had lunch at Typhoon! which is a Thai restaurant (the girls ate chicken satay) with numerous locations throughout the Metro PDX area. After lunch we promised the four girls ice cream. We decided to go to Mio Gelato in the Pearl. Mio Gelato has a couple locations in Portland and they make sorbetto as well as "regular" ice cream. Alena chose "Pineapple", while Mia Rosie had a scoop of delicious "Strawberry" sorbetto. Quite delicious stuff. Their friends ate Straciatella ice cream and it was no issue at all. Everybody was happy. As for the place itself, I have to say that their sorbettos are really good the staff however is not so much my cup of tea...I think the next time we will go to Ben & Jerry's in the Pearl. Isn't it great to have all these options ?! :)))

After all of the food we went to Jamison Square Fountain in the Pearl. It is so much fun for the kids. They wade in the water, water comes down the rocks...lots of fun for them. Luckily it was not so crowded yesterday. What a great is a link to Jamison Square.

Fun day at the Oregon Beach...

It feels like summer has arrived and the city is getting hot. On Sunday we decided to take a day trip out to the beach. For those of you that do not live in Portland, the beach is just a short 1-1/2 hr drive away from our home in SE Portland. It is usually nice and cool at the beach when the city gets hot...

We packed a picnic, beach toys, sun tan lotion, and off we were. All of us like Canon Beach a lot its downside is however, that a ton of others like it too so it gets very crowded. Therefore we decided to drive to Nehalem Bay State Park. It was GREAT!!! No crowds, and we found the ideal spot in the dunes. Both girls ran up the dunes, rolled back down, or Alena tumbled back down. It certainly made them hungry :) Just so glad that we packed our picnic, as the food issues is generally a little tricky at the beach. One thing to remember is that there is a little organic food store in Manzanita and they also sell vegan ice cream...

Here is a link to the State Park...


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