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?

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