Who We Are

Our viewership has greatly increased and I wanted to give you all an idea of who is behind this blog!

This blog is run by my husband and I (he does maintenance while I am the one who posts mostly). We are the PROUD parents of our sweet daughter, Marigold. My husband (we will call him PKU Dad) grew up in Rochester, N.Y. and I grew up on the coast of Maine. I absolutely LOVE the coast of Maine, and he was drawn to it too after visiting in high school. So, we both decided to study marine biology in university, which is where we met! We are both very environmentally conscious, I am a vegan and my husband is a vegetarian (woohoo! Only took 3 years of convincing). I guess people would say we're a little hippyish, granola, crunchy... whatever you want to call it, we love this beautiful Earth and we want it to stay beautiful! We are a young couple who love adventures, and meeting new people.  I have become a stay at home mommy, for now, while I teach Marigold her PKU diet and how important it is. After she starts school I either hope to finish my degree in marine biology or continue my work in the special education field. Marigold will likely be our only child, due to a mixture of me wondering how the heck I could ever share my love with anyone else, and the expenses that come with PKU. Basically, we are happy, fun, Earth-loving hippies who wish they were mermaids (okay maybe that is just me, not him).

I'll part you with this image of the symbol I have tattooed on my back, an Asase Ye Duru, which represents the divinity of Mother Earth.

Clinics

Every time that I sign into Facebook I see parents asking which clinics in the country are the best because they are so unsatisfied with theirs, that they would be willing to move anywhere to have the opportunity to work with a better one. How sad is this? Parents are having to uproot their whole lives and the lives of their children just so that their PKUer can get decent care! I totally understand this because I am less than satisfied with Marigold's clinic, and that is one of the many reasons that we are wanting to move, but I don't have my WHOLE life set up here. Sure, my family is here, and this is where I always saw myself settling down, but moving isn't a huge deal for my husband and I. As long as he finds a job we can pretty much go anywhere as a young couple with few commitments. This is just another reason why PKU advocates need to raise awareness of the condition and the hardships that those affected by it face.

Rainy Thursday

Every week a new bill comes in. Right now, Marigold has no coverage at all medically. She should, but because of circumstances that I could not control during labor she doesn't. Marigold, my husband, and I live in Canada, just a few miles away from the U.S. When I was in labor I went to a local hospital (that doesn't deliver) and they told me that there were some complications and that I needed to get to the nearest hospital ASAP. The nearest one just happened to be in the U.S. I am not a Canadian through birth, but through my parents, which means that Marigold cannot take up citizenship from me. In order for her to become a Canadian I need to prove that I can support her financially and pay insane fees and fill out piles of paperwork. So long story short, Marigold can't get covered in Canada because she is not a permanent resident or citizen, but she can't get any coverage where she was born because she doesn't live there. Then comes another issue...  I cannot work right now because Marigold NEEDS to be breastfed. There is less phenylalanine in breast milk than in formula. Marigold has a mild case of PKU, and doesn't need any diet intervention right now as long as she has no formula. I've tried finding a job where she could come with me, or where I could pump enough for her but it just is not possible where I live. If I were to go back to work she would need to have part breast milk, part formula, and then have some PKU formula since her phenylalanine intake would be too high supplementing with regular formula. The cost of the PKU formula, and childcare for her while I would be at work would cost $100+ more than I would make working full time.

I'm just venting and hoping that you might pray that my husband will find a better job than what he has right now so that we won't have to worry about her bills and care much longer. Unfortunately we have realized that we won't be able to live here, where I grew up and where my family is for many reasons. Including our lack of confidence in Marigold's clinic, the cost of her PKU needs, uncertainty of whether she will be able to take up citizenship anytime soon, and the lack of good jobs here for college-educated people.

Please just keep us in your thoughts, and thanks for reading this and praying for us.

PKU Awareness

I had never even heard of PKU when my daughter was diagnosed. I'm pretty sure that most parents of PKUers would say the same. It's just so crazy to think that most people are uneducated on the condition, but that so many people are carriers and don't even know it. What is really crazy though is that certain states are unaware of the fact that it is healthier and beneficial to people with PKU to stay on the diet FOR LIFE! I was looking up different state policies and WAY too many states only require formula to be covered until a child turns 18, 21 or there was one that stops at 6! THAT IS INSANE! One mom that I spoke to recently told me that in her state they are not covering her babies formula "because lots of babies need a special formula..." uhhh... so not the same thing. Yes some babies might need say a soy formula or something else THAT YOU CAN GET IN A GROCERY STORE, and that DOESN'T COST $400+ A MONTH! Sorry for all the caps but come on...

So I am writing this post out of frustration and to say that it is up to all of us who have been affected by PKU in some way to bring awareness to the condition. We need to write to our governments, share our stories and educate others. May (PKU awareness month) might have come and gone, but that doesn't mean that we should stop spreading the word.

You can find a PKU awareness t-shit at the link below. If wearing a t-shirt like this just is not for you, you can....

Make you own t-shirt
Put a sticker on your car (really they do raise awareness, I used to play a car game where I would google any awareness sticker I saw on roadtrips).
Write to your state or provincial government.
Share your story with local news, or on a blog, or just on your Facebook.
Hold a fundraiser in your community for one of the many good causes in the PKU community (e-mail me if you can't think of one!)
Share this blog or other PKU blogs and website with friends.

http://teespring.com/PKUchoice#pid=162&cid=1028

Some useful resources

 

I recently stumbled across some great resources I thought I should share! So Delicious and Gerber put out some PDF files with their phe content for foods, so here they are! As far as I know these are very recent and up-to-date.





https://drive.google.com/file/d/0B0DMCKPXRpH1SDVmYzg4SHlpTkE/edit?usp=sharing

https://drive.google.com/file/d/0B0DMCKPXRpH1R0NuMWZtRDZ4Y1U/edit?usp=sharing


The link will take you to my Google Drive account. Thanks So Delicious and Gerber! You rock! I'll post any more files I stumble across. I am still hoping that Glutino will FINALLY put in the effort to create a document to help people with metabolic disorders.

Formula?

     So now that I'm not so new to the PKU world I've been researching different types of formula since my daughter will have to drink it every day for the rest of her life (hopefully at least, my goal is to teach her how important being on her diet is). What I've found is really quite discouraging! Just looking at the back of a leading PKU formula and reading the ingredients makes my head hurt. The VERY FIRST ingredient on every formula I found is Corn Syrup Solids... Uhhh.... no thanks. It is great that the formula has all the vitamins and minerals she needs for the day, but while I was pregnant I was sick everyday because my body couldn't handle all the things that were in my vitamin at once. So why would I want my daughter's body to have to work even harder just to deal with some of the crap in her formula AND all the things she really needs?

     I haven't found a solution but a few promising leads, and the main reason I'm writing this post is to ask any PKUers or PKU parents if they feel the same way, and what they do. I've found a product from PheylAde, their amino acid blends...

                                             
 A phenylalanine-free, powdered medical food for the dietary management of phenylketonuria (PKU) in toddlers, children and adults, including pregnant women and women of child-bearing age.   
      I haven't done enough research on this product to have a full opinion, but it seems like a much better option than formula to me. I'd have to make sure that MK got her vitamins from foods and supplements at different times of the day, but this seems to be better for her little kidneys when she is a toddler and she'll get all the amino acids that she won't receive on a low-protein diet.

    Anybody want to share their experiences with me or even their opinions? E-mail me at pkumomma@gmail.com please!

10 Things parents of PKUers are tired of hearing...

1) So your kid has to have a low protein diet, that just means she has to be a vegetarian, no big deal!
2) My kid is lactose intolerant so I understand!
3) That is what you get for eating unhealthily during pregnancy!
4) She'll grow out of it.
5) She'll be so healthy eating fruits and veggies all the time!
6) So does that mean she'll have to be gluten free?
7) 350mg sounds like a lot! (when referring to phe intake)
8) What is phenylalanine? What is an amino acid?
9) My baby had to have a heel prick once, it was horrible, I know what you're going through!
10) Maybe you shouldn't have anymore kids if you're going to give them PKU again.

Heard all of these at a family BBQ last week! Good grief...

How I feel about PKU two months later

      Marigold is 2 months and 2 weeks old. So about this time 2 months ago I received the news about her PKU. It's amazing how much I've learned the last two months, both about being a parent and about PKU. I've learned that it is not as scary as I thought. I've learned that she WILL have a normal life, and be able to do everything she wants, some things just may take extra effort. Most of all I learned just how much I can love someone, and that I would do anything for Marigold.

     I've talked to dozens of parents of children with PKU in the past two months, and I've spoken with a few adults with PKU. We all would surely agree that our children (or ourselves) are capable of achieving whatever they may want in life, if they follow their diet. Sure, I still get a little sad sometimes when I think of how Marigold may feel different or get teased when she is older, BUT WHO DOESN'T AS A CHILD!? I got teased for being too skinny, for having crooked teeth, for being a vegetarian, for my initials... for tons of things! Marigold is going to get teased, there is no doubt about it. I just need to do my best to make sure that whether she is teased about her PKU or when someone calls her "Goldielocks" because of her name that she does not become too insecure about it.

     I realize that I am blessed to have a beautiful, smart, healthy (YES! HEALTHY!) baby girl. Really, what if it had been CF, or a tumor, or what if she had any sort of fatal condition? That would be devastating! PKU isn't though. It makes her unique, it is what helps to make her her. Her beautiful, perfect little self.

     It took me two months to get here, but I am no longer devastated by PKU. It's just part of life now.

Sleepy time song for Marigold

Fermes les yeux
Ma petite Fleure
Je t'aime beaucoup
Please don't be blue
It's time for some sleep
My hearts yours to keep
Because I love you

Taking Marigold's Phe Levels

     I've only taken Marigold's levels a handful of times myself, but not once has she even so much as whimpered when I've taken them! I've had a few parents ask me how I do it so I figured I'd make this post. I'm going to go through and explain everything I use even though any parents of PKUers would know what most of the things are, just incase anyone who doesn't have first-hand experience with PKU or a parent who hasn't yet taken a heel prick is reading!

    

                                       

                  Pictured above from left to right are a blood lancet, gauze, a Band-Aid, and an alcohol wipe.  

     The first thing I do is get all the materials together:

 

 

1. Blood lancet
2. Gauze
3. Band-Aid
4. Alcohol wipe
5. Blotter card
6. Pen
7. Envelopes
8. Rice heat wrap
9. Bottle if Marigold is grumpy

  The first thing that I do is warm up her foot with a heat wrap that I made myself...

                      

       This wrap was really easy to make! I just bought some flannel material and cut it into a rectangle that was about 2 feet by 1 foot. Then I sewed the bottom and two sides of it together while it was inside out. After that I sewed through the middle three times to make four sections so that the rice doesn't all fall to one side if I'm using it for something besides her heel pricks. Then I sewed along the top, just leaving enough room on top of each section for a funnel to drop the rice in. I added the rice next, then sewed along the top again. There may have been an easier way to make this but sewing is not a skill of mine!


     So like I said, the first thing I do is warm up her heel with a heat wrap. This is done to get the blood flowing better. Every time that I've taken her heel pricks I've only needed to fill one space on her blotter card! I think that warming up her heal well help a tremendous amount! After her heel is warm I wipe the area that I'll be pricking with the alcohol wipe and use sanitizer on my own hands.

     Before I prick her heel I have my husband hold her so that her back is against his chest, and she is sitting on one arm while his other arm is on her belly/chest supporting her.

                                   
               This is the closest depiction of how I have my husband hold her that I can find in a photo of mine.

If she is in an extremely grumpy mood I have him feed her with a bottle while I do the prick. It's rare for Marigold to be grumpy but it does happen! It helps her to not notice what I'm doing while she is already in a bad mood. If she is in a good mood I smile and talk to her while I do it.

    Next I use the lancet on the inner or outer side of Marigold's heel. I wipe the first drop of blood with the gauze because the alcohol from the wipe is still on her heel. I let the next drop fall into one of the circles on the blotter card...


                                


     The circles are on the right-hand side of the card. The goal is to fill about 3/4 of the circle. I've been told that it is perfectly okay to not have the blood all inside the circle, that they are just a guideline, but I do my best with a wiggly baby to get the drop in the center!

     Usually Marigold's blood is really flowing because I warmed up her foot, so sometimes I will fill a second one just because, but if I choose not to then I have my husband hold the gauze on her heel, adding pressure to stop the bleeding while I get the Band-Aid ready.

      After I put the Band-Aid on I set the blotter card to dry for 2 hours and write the time and date that I took the sample on the card. Then I put it in a waterproof envelope, then in an express envelope from the post office.


                    
                                       Waterproof envelope and express post envelope.

    
      So here is a list of steps to take Marigold's phe levels:

1. Gather materials
2. Warm heel
3. Get her into position
4. Wipe her foot with alcohol/sanitize my own hands
5. Prick her heel with the lancet
6. Wipe the first drop of blood with gauze
7. Let the second drop fall into a circle on the blotter card (continue this step until a circle is about 3/4 full if the first drop isn't enough)
8. Apply pressure to her heel
9. Cover the area that I took the sample from with a Band-Aid
10. Let the blotter card dry for 2 hours minimum (Not in the sun!)
11. Write the time and date on the card
12. Pack in envelopes I was given from her clinic and mail it out!

Finding Support

      Exchanges, phenylalanine, blotter cards, µmol/L... Phenylketonuria. None of these words meant anything to me two months ago. Now they're a part of my daily life. Even though Marigold hasn't started eating solids yet I look up the phe content for everything I eat, and everything that she might eat one day online or on an app I found on my tablet. I found a Facebook group where parents are always posting foods and their phe content, I really need to take everything from that group and make a list out of the posts! Marigold's clinic really hasn't proven to be helpful! My husband and I are considering moving as soon as we can just to have the opportunity to work with a different one. The people who work there speak with such a thick accent that it is impossible to understand them, and they talk down to my husband and I constantly. I'm not sure if they think that we are uneducated since we're in our twenties or what but we both are equally if not more educated than the nurse and dietician. I reminded them at our last meeting that I understand all the biological aspects of PKU perfectly thanks to my education but they continued to treat me like a complete moron. Like I said, we're hoping to move!

     The biggest help has definitely come from the Facebook groups I joined! PKU is so rare that I don't know anybody who lives near me who has experience with it. Social media has allowed me to come in contact with older individuals with the condition and parents of children with it as well. That support has helped more and been more informational than anyone at Marigold's clinic! I definitely recommend looking for support from people with first-hand experience with PKU!

Sweet Girl

    How on Earth are you two months old already? I can't remember what it was like the first few days you were home, it seems like so long ago.... but at the same time it feels like you were born just yesterday. I am so in love with you, I can't imagine my life without you now. You make me laugh every single day, and my life is so much happier with you in it. I've been meaning to write you a note for a while but I've been busy cuddling you and soaking up babyhood. I just  cannot believe that you aren't a newborn anymore! How does it happen so quickly? You seem so big to me, you're a whole three pounds heavier than when I first met you! Then we go out in public and I see other babies and realize that you're still my little baby, and that makes me happy. You are perfect in every way baby girl. You love to eat and snuggle, you don't cry when I take your heal pricks, and you wake up smiling every single day! You are swinging right now, all wrapped up in your pink blanket that has hearts and zebra stripes on it. You're fast asleep and so beautiful, I still don't understand how I made something so perfect. I'm going to wrap up writing this and go kiss you, I love you.

The Diagnosis

     My husband and I were so excited to take Marigold to her first doctors appointment! She was 6 days old and absolutely perfect. She never cried, slept more than expected and made nursing about as easy as possible. When we got there we were told that she had gained plenty of weight and looked healthy! The doctor told us that we were free to go, but that she wanted us to go re-do her heal prick test because a result had come back abnormally, but not to worry because it was extremely common to get false positives for the test she was referring to. I don't think that she even told us what Marigold had tested positive for, she didn't seem worried so I wasn't either. We went and re-did her heal prick, she didn't even cry much to the nurses amazement! Then we were on our way home for what would be a week full of cuddles and not worrying for a minute that something might be wrong with out little girl.

     When Marigold was 12 days old it was time to take her back to the doctor for her 2 week checkup. This time I had to go alone because my husband had gone back to work. She had gained more weight and the nurse joked about how strong she was before the doctor came in. I had played in my mind once or twice how it would go when she told me that the test she had us re-do came back negative and that all was fine. That isn't what happened though... Right when she walked in with a stack of papers for me I knew what she was going to say. All of a sudden she was using words that I didn't understand, and talking about doctors, nurses, dieticians and geneticists I would have to see that week. All of a sudden my world was upside down. I remember kissing my little girl and crying after the doctor left the room and texting my husband "She has PKU...".

Welcoming my flower child.

 I had not-so-patiently been waiting for you to make your arrival for weeks. I was walking everyday that was above 35 degrees, I was bouncing on a dumb exercise ball, I had eaten Chinese food... I'd even tried Castor oil. I was convinced that you weren't going to make your debut without medical intervention. Your dad and I decided to take advantage of what was hopefully going to be one of our last movie nights alone and rented Catching Fire and Dallas Buyers Club. I couldn't really focus, I was exhausted and couldn't get my mind off of you and wondering when you were coming. I was having very infrequent contractions, but had been for a week so that was nothing alarming! They started to change though, not any more painful, just different. I just wanted to be left alone, so your dad laid down on the floor while I took up the whole bed and half-heartedly watched Catching Fire. Your dad was getting annoyed because he had to work in the morning and I was keeping him from sleeping, but I knew deep down that he would not be going in the next day. The contractions went away and I let your dad go to sleep. That's when I noticed that I was leaking a little bit of fluid... Again, nothing that seemed concerning, it didn't seem like much of anything at all. I told your dad and he too was not worried since he'd heard it before. He went back to sleep and I just laid down, restlessly getting up to check for any changes every so often. At some point I fell asleep, but it couldn't have been for more than 20 minutes or so. I kept convincing myself to wake your father up, then would convince myself that it couldn't be my water that had broken since there was so little of it, and that I could not be in labor since I hadn't had a contraction in hours. I decided to wait until the sun came up and then go in if anything changed....

Nothing changed but I decided that we needed to go to the hospital to see what was going on. The nurse was very rude and quite honestly I'm still waiting for that first hospital we were at to send me a survey so I can express my mind in a non-crazy way. The doctor told me there was no way I was in labor, but guess what! He was wrong. I made him test for amniotic fluid and that is when we found out that you were on your way!

We left in the early afternoon for the hospital that I would be delivering you at. It was a busy day in L&D! I was put in a small side room until a large room was ready. They hooked me up to a machine to monitor your heartbeat and went to tend to other patients. I listed to country music while your dad read, we both assumed it would be a while before we met you. The doctor asked for me to be checked soon after, and I was already at 4cm! Everyone figured things would move slowly still though with you being my first baby and all. Around 3 a delivery room was finally ready for us. I went for a walk first and that is when I had my first really painful contraction. Your father and I quickly rushed back to the room, I made him blow up that exercise ball again and tried bouncing but it didn't seem to help. The nurse checked and I was at 9cm! I moved around, and kept ending up in the bathroom or leaning against the bed during contractions. The nurse asked if I needed to be checked and she was surprised that I was ready to go! I pushed on all fours for 5 minutes or so until the doctor got there, then for 20 minutes and you were FINALLY here! You, Miss Marigold Kathryn were born at 4:00pm on March the 15th of 2014! I will never forget the look on your dad's face, or how warm, wiggly, and beautiful you were.