Wednesday, December 3, 2014

'Welcome to Holland' In light of National PKU day

Being a first time Mom is foreign enough. But to also find out your child has PKU, it was news no parents are ever prepared for. Today 3 years later PKU is part of life. Is it still hard, hell yes, but I like many other PKU Moms out there, are learning to 'love Holland'

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, August 22, 2014

How much Phe?

There is a new website called How Much Phe?It is a God send for anyone with PKU and caregivers. It literally puts all food phe values at out finger tips with an internet connection. No more calling fellow Moms while on vacation and asking her to look up values as I stand in the grocery aisle! But the survival  of this information needs our support. They ask for and annual fee of 45 dollars.  But we need more than immediate family support of this. If you are extended family, and or friends of pkuers we need your help to ensure this priceless resource is available for years to come. Please read the letter below and consider paying for a membership or donating money through NPKUA.org.

Copied and pasted from How Much Phe 

How Much Phe is an online subscription service which provides access to the Phe content of foods as contained in the Low Protein Food List for PKU and PKUNews.org's Baby Food List. The site is a service of National PKU News. The revenue from How Much Phe will be used to fund PKUNews' Food Analysis Program and general operations. Our full Terms of Use are here.

A letter from Virginia Schuett:How Much Phe?: The future of the Low Protein Food List for PKU

Hello Everyone,

I want to encourage everyone in the PKU community to subscribe to our new How Much Phe? service.

The team who developed the program is thrilled that our hard work has led to this moment that we have all been waiting a long time for: the moment when we can easily and quickly access every food item in The Low Protein Food List for PKU (all 7,000+ items) from any mobile device that connects to the internet.

I know this is my dream come true and I think it will be yours when you try it.

I would like to convey to you a very important message: How Much Phe? is not just a very helpful new online tool, the future and survival of the food list really depends on subscriptions to the How Much Phe? Program!

The money from the program will be used for updating and adding to the food list and expanding the functionality of the service (for example, diet management tools). We just cannot go forward into the future with the current method of updating and maintaining the food list, which I have assumed responsibility for over the past 35 years, and selling the food list alone as a printed book does not bring in the income needed to support this activity.

Through the subscription service, which will provide an annual income that can support the lab analysis of foods and provide the funds for updating the database, our precious resource will be preserved and updated for people who need the low protein food list now and into the future.

The survival of the Low Protein Food List for PKUis a matter of health and quality of life to PKU patients and families. As part of the community that benefits in so many significant ways from this ongoing effort, we urge you provide to your support by subscribing today. Please help spread the word about this wonderful new resource! I hope everyone will subscribe to the new program and will experience the thrill of having all of the food list data at your fingertips at all times.

Virginia

Virginia Schuett
Director, National PKU News

Wednesday, February 26, 2014

Being sick

So valentines week Breeze came down with a fever. I feel very lucky that we hadn't experienced a high fever before, but it's scary non the less. I had done my homework and read a lot about them and tried to keep reminding myself that fevers are good, they are helping the body heal, and that her body won't be able to heal as well if I brake it. But that advice is very hard to follow! I did give Motrin 3 times over the course of 4 days, after her tempature was 103+. I do feel confident that her immune system did a great job though. I do many things to help build her immune system so for that I am thankful( if your interested in what just ask!)


So as with any person who is sick, Breeze didn't feel like eating or drinking. To most this is not ok to do, but it is a lot worse for PKU folk. When her body had a fever it burned itself, burned protein. Making her levels go up. 
So for the first week I was taking care  of a feverish, sick baby, trying to keep her hydrated and not think to much about the fact that her levels were going up, she was not drinking all her formula nor was she eating. It was rough. But she never did stop eating or drinking so that's good, and a lot of time she wanted water. Which, I know is great, but for Breeze her formula is better. But I am glad she drank it and she got it as much as she wanted.
Once her fever broke I was focused on getting her levels back in check. I think the second week was harder than the first! 
The second week of healing I experienced a  two year old dose of what high phe levels look like.  Yikes! I will say this, this week, Breeze is a little angel, yep, I said it. My 2 year old is an angel. 


It was hard to get her to drink her formula. ( I even gave her one of Raven's bottles,once just once) So our lovely dietician advised us to try putting tang in her formula. It's phe free. So as of four days ago, Breeze drinks all her orange milk, happily. She gets a choice, which I think helps. 'White or orange milk?' I'm also going to get her some mios which are also phe free to give her more of a selection.

What do you do to help your kids immune system?


Thursday, February 6, 2014

Traveling, PKU style!

A while ago while packing for a trip I thought it might be of some interest to some newer PKU Moms, and also my family and friends  what all goes into traveling with medical food, feeding a PKUer on the go, and how to plan meals with out being in the comforts of one's own home/ hometown, local grocers, etc. When you just can't go to the store and buy all the food for your child, it makes it a challenge. But I have traveled at least ten times since Breeze has been born, in many different scenarios. So here is what I have learned.

Food usually in my suitcase to check is low protein pasta, rice, cereal, crackers, veggie broth cubes, Molly Mcbutter, cassava chips, fruit snacks, vegan jello, formula, pancake mix, frozen bread dough, sometimes its baked(cook for love recipe, see link below), glutino pretzels, lo pro cheese(sandwich mate, or follow your heart, vegan cheese) biscoft, fake egg mix and of course a scale!

Typically I have a soft cooler inside my suitcase so on the morning of the flight I put anything frozen into it with some frozen cooler packs.  I also have a soft cooler that I carry on. I have her formula made for the day as well as any food for her during our travels. I also carry on an extra can of formula, just in case.

Also inside my suitcase and my carry on is a medical letter from children's hospital if there needs to be any explanation. Some foods we have found in airports that are ok for her to eat are french fries,  at Starbucks they carry pouches, freeze dried fruit and fresh fruit. Many restaurants will serve steamed veggie sides.

Before I leave I Google where the nearest Whole Foods or a store similar is located and try to make that a must hit ASAP, or I ask a family member to do it for us. I have so many to thank for doing that! Many of our travels have been to a city so there was a Whole Foods nearby. But last October there was not one so I had to trust a family member to do the shopping, one who never hangs out with us, the results were doable. The main reason why I prefer Whole Foods is because of it predictability in what they carry, for example, gluten free pretzels, the milk I use in her formula, so delicious coconut yogurt, Annie's fruit snacks,(they have no gelatin) coconut/and or rice milk, butter, sauerkraut, pickles. Plus I like the selection of organic fruits and veggies. But King Soopers or affiliate stores are pretty good.(and cheaper!)

I have also had food mailed to the place we were visiting. Unless you are staying longer than a week I would not recommend this option. Most of our travels have been to friends or family residence but a few times we were not so I recommend staying at a place with a kitchen, which with kids is just crazy not to!

One other thing that I have always done is have a way to contact fellow PKU Moms. I am a member of a Facebook page with lots of Momma's and I also have a local Mom I have called(thanks Michelle!). The reason for this is sometimes I cant find a certain brand, of say fruit snacks, I need someone to look in our Low Protein food 'bible' and tell me what brand to buy and how much phe per gram so I can calculate it.

There has been one time while staying in Florida by John's Crossing that I had a package meal of lo pro mac n cheese and I asked the manager at a restaurant to make it for me and explained a little why, but I didnt go into detail. It was a total mess, she argued with me about not being able to boil water, so I told her to microwave it.When she brought it out she told me it ruined her microwave and she would never do it again. Then she tried to tell me she was a nurse and that there was chicken in the food I was about to feed my two year old and that I really should feed her fish. I was so stunned that I think my jaw hit the ground. I wish I would have walked out right then and there. The name of the restaurant is Walts. Just to be clear, there was chicken fat in the meal, fat does not have protein in it, but the smart nurse didnt know that.

So that is a few things I have learned along the way, anyone have any tips to add? I have not done international travel so when that happens I'll let you know
                                           






Thursday, January 23, 2014

No time for a 'Bottle'

Alright well it's been about a week since we have thrown away the bottle, literally Breeze threw it in the trash,and I think we have finally made it over the hump. 

    Last bottle ever!!!


This past week has been a struggle, I'm not gonna lie. I am glad I threw the remainder of the bottles in the trash as well because I am not quite sure I would have made it.

But I think that we have crossed over and I am so happy. I know it's so important for her to drink her formula, but on days that she was really refusing  to drink and eat I got so upset. Upset, that she has PKU, upset that I had to give her this liquid that is more important than food. There where moments I just got so frustrated I didn't know what to do. I realized on day two that with holding food until she drank was not the way to go. 
Breeze 1, Mom, 0. 

So then I started to feed her, meaning she ate food then I gave her her 'big girl cup' and slowly she started to drink, the less I stressed the more she wouldn't fight it. Have I ever said being a Mom is the hardest thing I've ever done? Well it is. I thank God everyday for my girls and for the patience to be the best Mom I can be. It's frickin hard.


This was a particular bad night. 
This is what was left at the end of the night


Saturday, January 18, 2014

Party Time

Today we went to a birthday party for one of Breeze's best friends. Parties can be difficult for pkuers so I was hoping to bring along some lo protein food that was similar to what was being served. I asked the Momma and my challenge was crescent roll wrapped baked hotdogs and Mickey Mouse cupcakes. Food available that she could have was fruit, veggie straws and veggies! 

I decided to try a vegan recipe for the hot dog. It was a marinated carrot wrapped and baked in some lo protein bread dough. My bread dough recipe is from Cook for Love and it is delicious! I always have some bread dough in the fridge for easy access. For the cup cakes I used a bought mix (maddies) from the low protein food store at the hospital( a large storage closet with food on some shelves) for the ears, k- too gluten free Oreo type cookie from whole foods and a store bought frosting that is phe free.

She ate some of the 'hotdog' as well as the other things available. The cupcake looked super cute and I think she ate part of an ear and some frosting. ( Hers is the vanilla one) Regardless of what she ate I feel this party was a success!

Thursday, January 16, 2014

Happy New Year

This year I am really going to try and become an official 'blogger'. To me that means write more, post more and I think I will be changing this blog a little. I think that it is nice to read and see what other moms are doing to help their children grow and become active participates in this world we live in. I am trying my best and would like to share the success and failures that I have had while on this journey of parenthood, it just so happens my kid also has PKU so that might be interesting to some other PKU moms as well!

Having two children has been, so far, a little easier than expected. Raven is still pretty immobile so that is likely to change. I have really enjoyed watching Raven grow up with a sibling. The instant love for a siblings is amazing, I think Breeze trumps me at times.

 I am always on the hunt for fun new things to try with Breeze. For example this week we went bowling for the first time and she loved it! We will definitely be trying it again soon! One struggle we are having is being nice and all that in tales. Today Breeze decided to push, A LOT! We had to leave a gymnastics class because of it. I think she is all about getting a response from anyone. We also are taking the bottle away, today is DAY 2! Today she did not finish all her formula and she hardly ate. So needless to say this was a stressful day for Mom. But alas there is a good drink, bedtimes and always, always tomorrow. Good night world!