This Saturday I went to an awesome event hosted by my PKU clinic at Phoenix Children’s Hospital, sponsored by BioMarin Pharmeceutical Inc.
It was held in a cooking studio called AndyFood. There were a couple presentations followed by a cooking workshop by Chef Andy Broder. I learned some interesting things, got inspired about cooking and met a bunch of awesome people!
Me and baby! I could not have made it through this event without the help of various wonderful dietitians that held and distracted an over-tired baby girl while I mingled and cooked.
One of my favorite parts was hearing from Christine Brown, the Executive Director of the National PKU Alliance. She got us up to date on the latest goings on in research, education, support and advocacy. So much good stuff! One piece of news I found particularly interesting is that soon they will be launching a…
** taken from the latest edition of CanPKU news/ written by Nicole Pallone**
AVERY’S RIDE FOR PKU
When planning for Avery’s Ride for PKU began almost a year ago, a team was assembled and goals were set.
The initial team was comprised of Kevin Dube, John Adams, Nicole Pallone, Tanya Chute and Jenn Pino. Many, many (many) others joined us along the way. A project of this magnitude does not come together without a lot of planning and we spent hours on the phone planning routes, discussing logistics, making decisions – and setting goals.
We had three primary goals for Avery’s Ride for PKU:
1) To improve the sense of community among the PKU patients and families of Canada;
2) To increase the awareness and advocate for the needs of the PKU community; and
3) To raise funds so that CanPKU can continue working towards the goals of the organization.
As you might have read before, I started with a strict diet in order to plan a pregnancy soon. My last blood level was 9,4mg / dl – that was two weeks ago and I have been dieting since 15th August. So I think it’s a good progress and I guess the blood levels which I took last Saturday will be even better – at least I really hope so.
My current daily intake is 350 Phe / day and I am using the App of the company Mevalia. It’s a great app and very handy, plus I can note everything, I rarely forget my mobile – it was more difficult when using a paper notebook for the daily journal. I’m not yet counting calories, the app cannot count them (I wrote to Mevalia and suggest to add this function..) but I guess I have to start counting real soon.
Is someone of you also preparing pregnancy or is already pregnant?
well, I cannot believe it, after this crappy summer (at least it was such a one over here) it’s already autumn, my favourite season of the year. I simply love snuggling on the couch with a hot cup of tea and candles and having friends over and watching some nice films.
And last, but not least, it’s also the time of some delicious veggies – pumkins (I loooove loooove loooove those!!!), chestnuts, kale… I will report you of some new recipes which I will try out soon.
What is your favourite autumn meal??? I want to knooooow
Have a wonderful week.
PS: I do have a new email address for this blog – please email comments and feedback to firstname.lastname@example.org
Looking forward to your emails!❤
I hope you’re having a great weekend. A while ago, I got to know that the German company MetaX (http://www.metax.org/EN/Whatsnew.aspx) has a new crêpes mixture… When I first tried it, it didn’t work out quite as well as I had expected. But that was due to the fact that I used a pan to make those crêpes. Everyone who has already seen or tried French crêpes knows, that they are made on a special heated plate. So I did some research and found a tiny little crêpes maker on the internet, which also was cheap and ordered it.
And what can I say? I had a wonderful breakfast today, for only 27mg Phe in total – and it was so delicious. I sprinkled some sugar-cinnamon on top of them. YUMMY.
Have you ever tried crêpes? I’m looking forward to experimenting a little with different toppings soon, I will let you know
Have a great Sunday!
PS: I would love if you share your thoughts and comments below or on Facebook – PKU Treasurechest.
I really need to apologize for not blogging for such a long time. As you know from my last blogpost, I had a tough time with the diet. I was struggeling and couldn’t really get back into it. I really did try it often enough, but there were lots of temptations and I usually gave in😉 My daily diet was low protein products, taking regularly the formula, but having a lot of high protein things in between which of course pushed the levels high. My highest level which I took in July was 26,9 mg / dl, and I knew, it wouldn’t be good but actually I was shocked that it was such a high one. I got back on track, but I knew I couldn’t keep 100% diet during our honeymoon. (we went to Turkey for two weeks, it was wonderful!)
Now I’m back on the strict diet with 350 Phe, which is not as tough as I thought this time since I got another kind of motivation: I want to prepare for getting pregnant. For 2 weeks now I’m having 350 a day and my levels dropped from 21,5 mg/ dl (first level after the honeymoon) to 11,5mg (from last Saturday). I’m really proud of this progress and excited too, I think I will get the latest result today or tomorrow.
I’d love to have contact to other PKU moms or moms-to-be to share some experiences… This is so exciting
I also had a wonderful wedding back in May – It was stressful planning everything but it was so worth it and turned out to be a wonderful celebration with our dearest family and friends.
I hope you also had a great summer (can’t believe it, today it’s already the calendaric beginning of autumn, crazy how fast the time passes)..
I promise to blog more often within the next weeks and months, I got a lot of new recipes, ideas, low protein discoveries
first of all I must apologize for not writing for such a long period of time. Since the last blog entry a lot of things have changed. I started at a new job (which I absolutely LOVE… it’s great to go to work and love what you do, hadn’t been there the last few years..). And I’m getting married in May. So it’s going to be another 10 exciting months… We also booked our honeymoon and I’m so excited.
But… let’s come to the not so well functioning part: my low protein diet. I just realized today that in a week from now I will have my yearly appointment at the hospital. Time to face it: I haven’t sent in as many blood cards as I should have, AND, what is even worse, I haven’t kept the diet as good as I should have… I regularly take the formula (tablets at present, I really get along very well with taking them) but I use to eat noodles, bread, egg etc. (I also eat low protein products, it depends on my mood / my craving). Plus I don’t have an overview of the daily intake. I don’t feel good with this. I want to change it. But it’s hard, you might know it. Today, I started off with writing down everything I’ve been eating so far and I ended up with 281mg Phe. It’s around midday now.
I just want to get involved more in this blogging project again because I feel that it could help me to get back on track again. I will let you know about my progress and how I get along within the next few days. Hopefully my motivation doesn’t vapor, but constantly grows stronger… I would appreciate your feedback, tips or motivation comments / e-mails. Write me, what’s going on in your (PKU-)life… I look forward to hearing from you…