For the past few days I have been reflecting. My daughter will be a year old in October. How does time fly so fast? So much has happened in a year. Looking back, we have overcame so many obstacles.

While I reflect, I'm taken back to "the phone call". This was the night that my whole world came crashing down. I was heartbroken, distraught, helpless, scared, confused, and feeling SO guilty about my daughter receiving the PKU diagnosis. I remember googling everything I possibly could about PKU because I had never heard of it until that moment. The words that stuck out to me then, and still burn in my mind are: "Intellectual Disability". The more I think about it, the angrier I get that those words are the first to come up when searching PKU. With proper management, our kiddos do amazing and excel!

Shortly after her diagnosis, we were all sitting in the waiting room of the metabolic clinic. Boy did we have so many questions. It felt as if we were at her appointment for 12 hours. Everything was so heavy. After the appointment, we took our daughter to the lab for her first "spot check". It was excruciating having to watch my precious newborn go through that. It was a kind of pain that aches deeply in your soul. If I could go back and hug myself, I would hug her so tight and assure her that things would be so different in a year!

The "Spot Checks" still make me sad, but every week we are discovering new tips and tricks to making them more tolerable for her. I thank god everyday for her Nana because she does the spot checks for us. Not everyone is that lucky and I'm so thankful.

I remember feeling incredibly blue for months. Don't get me wrong, I still have my blue moments. But, I kept blaming myself for her diagnosis. What did I do wrong? What could I have done differently? And while I know these feelings and thoughts are normal and there is truly nothing that I did wrong, I couldn't help but have them. There is nothing I could have done to prevent this. PKU is genetic. She had a 1-4 chance of having it. Even knowing this, I still blamed myself. (Mommas: if this is you right now, everything you're feeling is normal).

Periflex early years was the formula that was overnight shipped to us when we received her diagnosis. We went crazy making sure that we logged every little drop that she consumed. We would measure the tiniest amount left in her bottle. We were so worried and had log-books everywhere. It was such a balancing act trying to make sure her levels were in range. With every spot check that would come back, she wasn't where she was supposed to be. This went on for MONTHS. This was every PKU parents nightmare. Her levels were all over the place and when you keep hearing "irreversible brain damage" in your mind, the fear becomes that much greater. It got to the point where her levels were far to low, then at one point spiked up to over 19! We had no idea what we were doing wrong. Come to find out, we weren't doing anything wrong. She just took longer to get regulated. If you are in this situation, things will get better. Don't give up.

After what felt like an eternity, her levels were finally in range! A huge weight was lifted off our shoulders and we could finally breathe again! Don't get me wrong, there were a few weeks that they still were not where they were supposed to be, but for the most part they've been in range for months now! It took us a long time to get to this point.

I remember finally getting the green light to start purees. It was such a strange feeling because part of us was so excited, and the other part of us was terrified. Would this mess up her levels? Are we going to accidently do a calculation wrong? What if she's allergic? It was so scary at first. But oh my goodness, she loved her purees. We tried something new each week. Her favorite then (and now) was carrots!

The thing that a lot of people don't talk about, is the feeling of helplessness in the grocery store aisle. Even now, I have a hard time remaining happy and positive sometimes when I'm searching for PKU friendly foods. I used to struggle with it significantly more than I do now, which goes to show that things DO get easier with time. I remember having a complete breakdown as soon as I got into my car after leaving the grocery store one night. I spent over an hour in the baby food aisle searching for PHE amounts on HowMuchPhe.org. I was so overwhelmed by such high amounts of Phe in so many foods. I felt so sad because what should be an exciting shopping experience, instead felt so stressful and devastating. Again, looking back, I just want to hug her!

Wow have things changed! Now, we have a system! I know what foods are "Yes" foods, and which ones are "no" foods. I've learned that its easiest to write the Phe amount on the jars or pouches of food. I've discovered that each Gerber Puff is approximately .1 of a gram. I learn new things every single day and in the grocery store, I am so ecstatic when I discover something she can have! There are no words to describe the level of happiness, excitement, and anticipation to go home when you find something in the store that is safe! Just the other day I discovered that the crunchy meringue cookies are pretty low in Phe!

Cook For Love, is a lifesaver! How Much Phe is also a lifesaver. All of the PKU groups on facebook are some of the most supportive groups that I've ever been a part of. We all have gone through the same feelings, stress, worry, and we share the same goal. Keeping our kiddos healthy, and safe!

Now our beautiful baby girl is thriving! She's crawling around so fast. She's almost standing. She's developing exactly the way she should. She is a lover of Puffs and almost every single puree. If I knew now what I didn't know then, I would be amazed. Honestly, If I was able to talk to myself when I received my daughters diagnosis and tell her how well Presley is growing, how we have been managing her diagnosis like champions, and how happy we are now, I would never have believed myself. But truly, time is an amazing thing despite how fast it goes. We have learned so much in the past year.

Managing PKU is hard. It is emotional! But it is so rewarding. I learn new things every single day. I am a super hero and so are all of you! Those that have PKU, and those that are parents to PKUers are some of the strongest people I know.

Wow... What a year it has been.