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
                                           

There's a New Kid in Town!

It happened! We had another beautiful baby girl. Her name is Raven Star Porter. She was born May 29th and 3:54am (on her due date!) She weighed in at 6lbs 11oz and 19 1/4" long.  To answer the burning question, no she does not have PKU. We found out when she was 6 days old that her levels came back normal. I think that I was shocked, I was expecting her to have PKU. But what a relief it is. Raven has nursed like a champ since she came out and I really did not want to have to take that away, if even temporarily. I am so grateful and feel so blessed. Having  a non-PKU little baby and being able to do things "normal" has been like I am a first time Mom. It is not something to be taken for granted. I am relishing in every cry. every late night feeding in every poopy diaper.

Breeze is adorable with her and calls her 'Baby Sister awww' The aww part came in because if she would kiss Raven or hug her people around her would go awwww, and it stuck. Its pretty cute and I hope it stays around for a while. She is adjusting to sharing Mom as well. I just make sure to get lots of cuddle time with Breeze when baby sister is sleeping.

With Raven not having PKU its hard not to think about the issues that may arise with having one sibling with and one without. But that's for another blog in another year far from now. So at the moment  I'm just going to enjoy the many blessing that have come my way.

Time Flies

Holy cow where does the time go? I am at the moment, Mom to a 19 month old toddler with,as you all know, CPKU. I am also expecting another babe any day now, I am 38 weeks pregnant. In case you were wondering the chance of us having another PKU child is about 25%. I am fine saying out loud that I hope that this next baby does not have PKU. Some have asked, wont it be easier for Breeeze? My answer is this. Maybe, but why would I wish something on my child that will make their life hard just so that Breeze will have that in common with her sibling? There are plenty of other things they can have in common that can help create that bond that siblings have. I have tried to not think to much about it and will nurse in complete bliss until we find out the results of the newborn screen. I've been there done, done that and will just role with what ever happens. I'm sure I will cry either outcome.

Breeze is THRIVING. There is no better word to describe her. She brings so much joy into our lives. She has become quite the little talker putting three-four words together already. Her vocabulary is huge, and I am not just saying that cause I 'm her Mom ;) She took off walking two days after her birthday and has been running ever since. She loves to swing, look for airplanes and birds,watch her signing times videos, go to the park, play in the water, love on her babies and make people laugh. She looks at my belly and says" big ball" or as of recent, 'baby loud" After hearing the babies heart beat the other day at our appointment.

Breeze is not quite as good of an eater as she use to be but I think this is a common frustration with any Mom of a toddler. Its just a little more stressful on a PKU Mom. But her phe levels have still been good, if even slightly low. I stopped nursing around 14 months but had a freezer full of frozen milk so it wasn't until around 16 months that she was completely done. She now gets phe from food and whole milk that I add to her formula. To some whole milk may come as a surprise, but she cant taste it, so she is not acquiring a taste for milk and its better than giving her say 'real' bread that she would acquire a taste for. She eats a mixture of fruit, veggies, some gluten free products, lo protein pastas, rice, cheese, bread, crackers. Im always trying to come up with new ideas and new products to give her. I do feel like the more products she can buy from a grocery store the easier it will be for her to stay on diet when she is older. I am lucky and blessed to be able to spend a little more on food!

I will keep you posted about baby #2!

Meeting friends

So today I went to the hospital to drop off Breeze's blood sample( that I drew from home! Hooray for Mom!) and met another PKU mom! She has a daughter Abigail who is the same age as Breeze. We sat and talked for a while comparing notes about eating, nursing, phe levels and such. It was so NICE! We talked about trying to start a PKU mom group. She knows of another Mom and so do I, four Moms is a good start I think! So gonna talk to Casey and see if there maybe is a room available at the hospital to use once a month or so? I will keep ya posted

Playing with a few of our friends

Mirror Fun!

Aww lovin her bestie