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.
This was a particular bad night.
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 is what was left at the end of the night
Hi Emele- I found your blog from a pin on pinterest. I'm so glad I did. I'm new to the blog world so forgive me, I couldn't find another way to communitcate with you. I'm a first time mom with a precious little girl named Lyla. We found out Lyla has PKU when she was 5 days old. I am from Nebraska and live in Northern MN. I've yet to talk to someone with a child also with PKU. I'd love to learn more from you. After reading your birthday party experience, it made my heart smile. I'm new at this and she's still young, but want to make the life of Lyla as worry free as I can. Thank you for creating this blog.
ReplyDeleteHi Jamie! I am so glad that you found me! How old is Lyla now? I totally understand wanting to talk with other Moms. That is why I decided to make this blog. How are you dealing with the PKU news? As you can see Breeze is thriving, we are actually thinking about starting Kuvan, which a a drug that is used in PKU peeps that helps to encourage their unworking enzyme to maybe work a little better, thus increasing their phe tolerance. But not all CPKUers are responders, just depends on how many enzymes that kinda work there are to boost. Are you on facebook? Click on my badge and find the cook for love facebook page(click likes, then it under groups) It is full of PKU moms that are so knowledgeable. Once I found them I really started to feel more confident and less alone. I also have a facebook page for this blog if your interested. I'm also on pintrest and have pinned a lot of recipes for PKU. Good luck and feel free to ask me any questions or chat or vent or what ever! Us PKU moms gotta stick together!
DeleteEmele- I can't tell you how grateful I am to have someone to finally talk to! Would you prefer email or FB messenger? Thank you recommending those group. I recently posted on Minnesota PKU FB page, no response yet, but didn't know if that was the right route to take or not. I look forward to talking with you.
ReplyDeleteThank you so much,
Jamie
I completely understand! FB messenger would probably be better so that your emails don't end up getting missed. Look forward to hearing from you!
DeleteJamie, So I accidentally removed my facebook badge, and cant figure out how to get it back! So hopefully you already found me but if not let me know!
ReplyDelete