A PKU Update (and a small pity party)

The past month has been somewhat tougher than normal. Hadley's phe levels and tyrosine levels have both been low. In the past, her phe levels have been low when she is going through a growth spurt. I have noticed that when her levels are low, she tends to sleep more, but that could just be a natural effect of a growth spurt. Her tyrosine levels have been borderline low for a while, so her doctor finally decided she needed to be put on a tyrosine supplement. At first I was resistant to the idea because I like to keep things as simple as possible regarding her formula, and I knew it would be one more thing to have to fight with insurance about. However, we were able to order what we needed from Amazon and a bottle is only about $11. She will get 1/8 teaspoon of the tyrosine powder in her formula every day so the bottle we got will last us for a good while. 

A couple of weeks ago, Hadley went through an 18-hour period when she would NOT drink her formula. Let me tell you, those 18 hours were absolute emotional torture for me. Yes, eating all of her food is important for maintaining her phe levels, but the most important thing is her formula! I basically was a mess and cried non-stop practically begging her to drink her formula. Seeing Mommy upset made her upset, which made me feel worse. I still am unsure why she decided not to drink it, but thankfully it was short lived, and her phe levels still came back within normal range that week.

We have had a lot of issues with her cold/frozen food orders arriving hot. These companies need to get it together. If you know a cold package is coming to Alabama in the middle of July, you need to put more than 2 ice packs in the cooler. Fortunately, they have been good to work with us about resending the order or reimbursing us, but it still doesn't solve the problem of Hadley not having her food. Her variety is very limited when she is only able to eat things that I can find at a local store. 

Speaking of finding food in stores, it is a wild goose chase that never ends. I was able to find her cheese and a couple of flavors of her yogurt so I am excited to get those for her and not have to pay ridiculous shipping costs. It's times like that though that I really wish I could just go to ANY store and buy ANY brand and ANY flavor of yogurt. Life would be easier. 

Throughout all of this, I am finding it harder to stay positive about Hadley's PKU. It concerns me that things are only going to get more difficult as she gets older. I find myself becoming angry that we have to deal with this and even more angry that people just don't understand. Other parents can go to a store and see something that looks good and buy it for their child. It's just that simple. For us, it is so much more complicated. 

I just try to remind myself that we are incredibly lucky to live in the time that we do and that we are able to give Hadley what she needs, but that doesn't always make things easier. The last thing I want is for people to feel sorry for us, so I generally don't talk about the negative aspects of it, but writing it out sometimes helps me deal with it. If you've gotten this far, thanks for reading.