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!