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
                                           

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

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!

This girl can eat!

Adjusting to what Breeze can and cant eat has been slightly difficult for me at times. Processed food, what? Cheese like food, gross. I find myself thinking, "well that looks too healthy, she probably cant have that."Everything touts protein, protein, protein! Me get negative? Never!

So I have come to the conclusion(and a more positive one) everything I have control over, the food she can have, will be the best(to me that means organic, fresh, power foods). At around 10 months old it was getting difficult to get this girl full on just veggies and fruit, it was time to add lo-protein food(the filler) to her diet. It was time for carbs. So I bought some lo-pro pasta, crackers, cereal, made some bread, tortillas, pancakes, oh and she can have gluten free pretzels. I am blessed that Breeze loves to eat, but her food taste good, I make sure of that. I always try it first, if its not good to me, I am not giving it to her. I am not a picky eater and I like most things, but there have been a few things that she wont eat and I understand why!

Another thing is even if I have never had it, or know that I am not really a big fan, but its low in phe I offer it to her. One being sauerkraut,  Breeze would drink the juice if I let her! I also bought her some sea weed chips and she likes those as well! One thing I have found that it is easier to find sweet food for Breeze than savory/salty. So when I do find something in that area she tends to gobble it up. "Solids" was daunting to start with Breeze and took some work but I feel we are adjusting. 

Our dietitian has been great and supportive in allowing me to continue breastfeeding, and I have a great group that I am part of on FB and also a non profit organization called' Cook for Love' that has a ton of great PKU friendly recipes. I feel very blessed to be so connected to so many supportive Moms in the same situation even if miles are between us. I have connected with Three other PKU Moms in the Denver area with girls all around Breezes age that has been great as well.

Veggie Nuggets

Cassava Potato Latkes

Lo-Protein Bread

One Happy Eater!

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

The Great Outdoors

Last weekend we went camping. It was Breeze's first time and she did great. Naps where a little bit of a struggle but she slept like a champ all night long in between Adam and I. It was not the hardest camping in the world with a camper trailer in a camp ground. But hey, you gotta start some where! It did make me start to think about back packing in to go camping when she gets older. Adam and I always use the freeze dried meals, they are so simple, good and easy. But packed with protein. So hmmmm what will Breeze do? This I will have to investigate further and possibly have a new business venture on my hands. Maybe I will talk to the cook for love ladies. It cant be that difficult to make a recipe and freeze dry it right? Anyone have any experience freeze drying food? To feed Breeze and keep track while camping was a little tricky and I must say I was not the best at it. Plum organic has these great pouches though that Breeze loves, but unless I weigh out portions, or she eats the whole thing I'm not sure how much phe she is getting. So I just gave her the mango and pear pouches that I know are low in phe. I think next time I will have planned meals and already have everything calculated and divided up.  Live and learn right?


We also went on a great hike to Mohawk lake just outside of Breckenridge,GORGEOUS! It was so nice to get up into the mountains.

Hiking with Dad above tree line

Mohawk Lake

Bubble time!

Its a family affair

There was also a very pretty waterfall!

Our Home away from home

One of those day...

Today has been one of those days where I wish I had another PKU mom friend to just talk with. It all started with my dream I had last night. I dont remember the details but the gist of it was basically the world as we know was ending and that included how I got Breeze's periflex formula. What would I do with out it? How would Breeze become if she didn't have it? These are very scary questions for me and this dream made me face one of my biggest fears. What if we could not get her formula? The "healthy" way I eat is not healthy for her, and today, that makes me sad and frustruated. I dont want to feel this way and I considered not sharing this post,but reality is, this is not always easy for me. Reality is, I get upset still, I get sad and it is hard. I have always wanted this to be a positive blog about PKU, but also I want it to be real. What is real? My daughter has PKU. There are lots and lots of foods for her to eat. She is really healthy and really happy, and,I have a very large basement to hold lots of periflex formula stores.


Side note

After reading this post, if you feel any sort of sadness towards me please feel free to read the post'Please dont tell me your sorry.';) I,just like any new Mom, have had one of those days. And I feel better after telling you all about it!

This and That

    So it has been a while since I have posted...sorry! But it is spring time and our lives always get busy this time of year. Breeze is doing great. Though her levels have been high the past two weeks, which is a bummer, but all we can do is up the formula intake and check again next week.  She is growing, and eating more and more. She is just about 17 pounds now and in 9 days she will be 6 months old! She is sleeping about 12 hours at night, yah! But she has always been a good sleeper. The weather has been amazing this spring so we have been going on daily walks outside. Breeze loves the carrier so I wear her all the time. I LOVE my carrier! The brand I have is Freehand, designed by a local couple, it puts her into a very comfortable sitting position which is  good for her hips, well I guess I should say not bad for her hips. We have also been going to this great indoor water park to go swimming. Breeze loves the water, but that is not surprising since her father does too! Breeze is getting very strong, she has lots of tummy time, and practices sitting on her own. Although she still just tips over so she needs a soft landing! She has rolled over, twice,and seems not interested in doing it again! We also have started using American Sign Language with her. Which is fun for us to learn as well! We are using the Signing Times series of videos.
    Today was a big day for Breeze, she tried rice cereal for the first time!  She did not think it was so exciting, she didn't know what to think actually. But I was excited for her.  She didn't seem to like her Johnny Jumper that much at first and now she loves it. So we will just give it time. Since she does not really eat that much of it I did not have to count it towards her phe intake for the day. I mixed it with formula, not breast milk. We have an appointment with Casey, our dietitian, on Monday to learn all about starting solids. I spoke with her on Friday and she said that I could go ahead and try the cereal over the weekend. So, more info to come about solids!
      So I have been feeling the need to interact with other PKU moms for a while now and finally I got in touch with one who lives in the Denver area! She is heading up the effort to start a PKU non profit here in Denver. So I am going to join efforts with her. She has a daughter who has PKU, she is 16. So I am excited to meet them. I willl keep you posted better I promise!

Going on a walk!

She loves it! Cant you tell?!

Only the best for this girl

She kept trying it!

New swing at Memaw and Pappy's!

Her new favorite spot

"Yah, I could roll over if  I wanted to....."

Super Baby!

Just Cute

Swimmin!

Patient Power

   I found  a great website called Patient Power. It has a lot of PKU (and other diseases) information. There motto is "Knowledge can be the best medicine of all."  Not only is it educational but also it has a wealth of stories about people with PKU. Another thing that is really great is that you can watch the story, read the story or listen to the story. So for my husband who refuses to read, this is especially great! I just read an interview between a young adult with PKU and a doctor who specializes in PKU. Its called

 PKU: 4 Keys to the Foundation for a Healthy Life 

 It was a great interview that gave two perspectives on raising a child with PKU.

Please don't tell me your sorry

One of the most important things for Breeze is that we always stay positive about her PKU. Sure we may all struggle with it at some point, but we should never let her see or hear anything negative about it. She's is unique, not weird. Her food is special, not strange. When someone says," I'm diabetic" do you tell them your sorry? No. So please don't tell us or her that you are sorry either. PKU is nothing to be sorry about, it is just a different way of eating. That's it.

 Breeze is a very happy and healthy baby, not to mention CUTE!

A few good Quotes:


I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you can appreciate them when they're right, you believe less so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.- Marilyn Monroe


"Life is too short to wake up in the morning with regrets. So love the people who treat you right, forget the ones who dont and believe everything happens for a reason. If you get a chance take it, if it changes your life let it. Nobody said it would be easy,they just promised it would be worth it."


'Dance like nobodies watching, Sing like nobodies listening, Love like you have never been hurt, Learn like you're going to live forever, Lead yourself as if everyone was following you, Give like your life depended on it and Live like you were dying tomorrow! "

When life gives you lemons, make lemonade

       I am the happy, fortunate mother of Breeze. She is the most wonderful thing that has ever happened to me.  Well, besides my husband Adam,without him there would be no Breeze(no pun intended!)
        Nothing about our parenthood journey has been traditional. We were unable to conceive the old fashion way. So with a little help from modern medicine we got pregnant on January 15th 2010(yes I know the actual date!). Breeze was born on October 9th 2010 after an amazing birth experience at Mountain Midwifery. We went in for the normal two day check up and Breeze had a little heel prick to take her blood for what is generally called the' newborn screening test'. Six blissful days later, the 'Happy New Mommy Bubble' was popped by a single phone call.
        A midwife nurse called to inform me that Breeze's screening for PKU had come back high and I needed to go to Children's Hospital that day to get a more specific test. I was holding it together pretty good until she told me this could interfere with breastfeeding. Until that day I had not heard Breeze really cry,the pain she felt broke my heart into a thousand pieces. One good thing about a blood draw is when they are over, so is the pain, I think that Breeze recovered quicker than I did though.  I'm not sure I will ever fully recover from learning that my child has PKU,  although she is and will be a perfectly normal child.

 I'm not sure I will  recover from the fact that I have a child who has a disease.

 I'm not sure I will ever recover from how blessed and lucky I feel that she has a disease that is treatable.
   
        I will never fully recover from the fact that God chose me to be this little girls Mother. Chose Me, the one who hates to do dishes, but will wash bottles and nipples all day long. Chose Me, the one who hates hospitals, but will take her there to get her blood drawn once a week. Chose Me, who is all about organic and non processed food, will make formula and processed lo-protein food for her and tell her"this is a "Yes Food" So, so far nothing about this journey has been what I would call the traditional experience, and I can honestly say now, I would not have it any other way.

With this blog I am hoping to be a source of information to my family and friends and possible other PKU Mom's about a day in the life of Breeze, our precious child who is made even more special and rare because she has PKU. With a little extra info thrown in as well. Enjoy!

Boy or Girl? We did not know...