Unanswered Prayers

It's hard to believe that this girl is 4! When we first found out Breeze had PKU, the dreams of the future became clouded with fear and uncertainty.This unknown 'scary' thing indeed rocked my world, some hard, but now, looking back thus far, I can see it has filled our life with more blessings than hardships.

I am so,so, thankful. 

I have an amazing support team at The Children's Hospital, that has given me amazing opportunities just in this year alone! I've  gone to an all women's camp, rode my bike over mountain passes and now to a low protein cooking class in Napa valley. As a Mom I've learned we all have our struggles, all we can do is our best with what God has given us, and support each other through it. 

Breeze and I have new friends!

 I have met amazing PKU moms who live minutes from me! (Which really is such a blessing) and Breeze has fellow PKU friends.

She can learn from this disease

I hope for Breeze to learn that PKU is not something that defines her or holds her back in life. But sees it as a a spring board to embrace all life has, because, it is in fact a gift. I hope she learns to use it as an opportunity to give empathy and compassion to those around her. We all have struggles in life, it is how we use those struggles that makes all the differences.

I can learn and teach(hopefully!)from this disease

 I am blessed beyond measures all the time by something that is a struggle. I hope as I Mom I can teach my children many things, but one thing for sure. Always thanking God for the many blessings in life, but probably mostly, for the unanswered prayers.

'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.

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

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
                                           

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

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!

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!

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!

We need your Voice!

Important decisions are being made in Washington regarding the future of PKU medical food coverage! Please help us and Take Immediate Action!

How You Can Help Now: (...and really, it takes just a moment!!!)
We need everyone to submit written comments to HHS asking them to (1) Ensure that EVERY state’s essential health benefits plan provides coverage for medical foods for the treatment of PKU under the chronic disease management category; and (2) ensure that people with PKU are not discriminated against based on their disability by denying coverage of medical foods. Representatives from the NPKUA recently met with HHS on this issue, and HHS urged us to have as many people as possible submit comments on the new regulations. (Feel free to cut & paste these 2 points and personalize them into a request!!!)

HHS recently issued a set of regulations regarding the essential health benefits for the health insurance exchanges, leaving the decision to each state to select its own essential health benefits. This means that our state may or may not include coverage for medical foods to treat PKU, and even if our state will include coverage for medical foods, it may not be permanent. We need your voice!

HHS will only accept comments through December 26, 2012, so please act quickly!

Click the link to submit your online comment TODAY!
http://www.regulations.gov/#!submitComment;D=CMS-2012-0142-0001

Thank you for taking the time to send your message to HHS!

Here is what I wrote:

My Daughter Breeze Porter is 14 months old. She was born with a rare metabolic disorder called PKU. This disorder was diagnosed by the mandatory new born screen heel prick when she was two days old. Breeze's body does not break down protein like the rest of us and if left un-diagnosed she would have become brain damaged by the build up in her system. Thanks to the test, we caught it early and she will go on to live a normal life, but she does require a special diet. Although by law we were required to find out she has this disorder, it is not the law for insurance to cover the cost of her medically prescribed food and formula that she is required to eat/drink for life. The cost of low protein food is not the same as what I would buy for myself at the grocery store. A loaf of lo-protein bread is $15.00, a bag of lo-protein pasta is $10.00! In order for Breeze to grow up healthy and be a contributing adult she has to have this special diet, with out it she could be costing our county hundreds of thousands of dollars by needing to be institutionalized. This country has done a good job taking care of our newborns by mandating the newborn screen, but not taking complete care. By not mandating the coverage of the medically prescribed food they need based on the results of this test. Please do what is right for this small but significant group that needs your help. You are the only ones who give us a voice that is heard. Thank you for your time.

Seriously how can you not copy and paste for this sweet face!

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!

I'm Back

Back from what you may ask? No I have not gone on any fabulous trips as of late, I am back from spring craziness! Although I am no longer doing my garden maintenance business I did do a few annual jobs, four to be exact, to make some extra cash. So it may not seem like much but it took quite a bit of juggling. All the while squeezing in family visitors, brief couch surfers and normal house hold /baby duties. I am back(!) and today after putting Breeze down for her nap I actually thought to myself. "What should I do now?" I  didn't have a million things to do before she wakes up. Ok well there is laundry, but its down stairs and easy to ignore!
     In my last post Breeze was almost 6 months and we were about to leave for Florida for 10 days(yes it was as good as it sounds!) She just started to to eat solids. Well I am happy to say that Breeze eats all kinds if food! Anything I give her she eats, it truly is a blessing! Lets just pray that it continues.  I stopped giving her rice cereal cause she just didn't like it. I tried it, terrible stuff. So I switched to the oatmeal, which is good and started adding fruits to it. I follow the four day rule, a new food every four days in case of a reaction. So as of now she has had mango, blue berry's, banana, pears, peaches, yellow, acorn, butternut squash, sweet potato, roasted garlic(yes really), white potatoes, brussel sprouts, apples, cauliflower, So delicious coconut yogurt,avocado, prunes..I think that's it. I am always looking for something new, oh and cinnamon! Yes she ate it all and with gusto. Next on the list is beets! I have been using this great website called www.wholesomebabyfood.com tons of great information. 
       So giving Breeze solids is the same as starting any other baby on solids, as you can tell from the list. Although I am giving her the coconut yogurt instead of dairy. You don't see peas on the food list, nor will you. They are very high in phe and not even worth giving.  The goal right now is to give her 60 mg of phe a day from solids. I use my scale and I weigh out food for her meals and write in down in a log that I have. So for example for breakfast this morning she had 1 gram of oat meal(6.3 mg phe/g) 30 grams of mango(.17 mg phe/g) and 32 grams yogurt(.16 mg phe/g) So then I just calculate the grams times the amount she ate for every item and add it together to get her total phe for the meal. So that meal was 16.5 mg/phe so now we have 43.5 mg left to get from food for the rest of the day. Now one thing to remember is there are no emergencies with PKU, and if she is still hungry and she has had all her "allowed" amount from food, I don't cut her off. She leads the way in this journey, if she starts eating more I give her more and we bump up her allowable amount from food. Nursing and formula will  adjust themselves. But it is still very important(as it always will be) for her to drink her formula, and breast milk. So she gets that first.As you can tell it would make things more difficult if she was a picky eater or wouldn't finish food she has started cause I would have to recalculate.
        Since starting solids her levels have been with in range to even a little low. I am going to start doing the blood draws myself so we no longer have to go into the hospital. Over all Breeze is doing great. Her little personality is blossoming and she is very talkative and happy. She is so much fun and I am lovin every minute of it! I think I hear her now...chatting in her crib.

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.

Results and other news

   Good News this week! Breeze's levels are back in the range we want them to be. Her Phe was a 3.6 and her Tyrosine was 2.8. So we will continue with the same amount of formula for the next week. Using 65 grams of Periflex formula adding water to make a total of 13 oz. This amount of formula has been pretty easy to manage. I have been pumping about 3 times a day. She has been finishing her formula in about 3-4 bottles.
 
    Big News this week! Breeze rolled over for the first time! She has done it twice and not again since then, but at least she knows she can do it! I also have joined an online PKU community through baby center and have made a friend who has a daughter with PKU! I had no idea how nice it would be to chat with another Mom who knows and understands the PKU talk. Her daughter started solids about a month ago and it is going great. She started with applesauce, which is very low in phe. So I am pretty excited about that. I was also just asking Casey, our nutritionist, about other PKU Moms in the Denver area and I guess there is a mom who has an older PKU daughter and she is starting a Colorado PKU group! So lots of great stuff happening just in the past week!