2012 Our last visit to Texas Children for PKU. "no more food restrictions, no more formula, no more finger pricks or blood drawn for levels, no more PKU follow ups EVER!!!"
PKU had been our life for so long. I literally ugly face cried that day. I didn't like the feeling of not knowing if this could hurt my baby boys; not understanding how they could "grow out" of a Genetic Disorder. I know I must of asked the Doctor 1,000 times if I heard him right, I'm pretty sure he thought I was insane he's giving us good news and I'm freaking out... After I calmed down and processed the news we went home that day and celebrated with Treye && Talan both eating their very first steak ever... && they hated it
5 years later It feels like such a life time ago... Now my boys most definitely would prefer steak over veggies any day!! BUT I still couldn't let it go. I mean, if levels could get better, couldn't they possibly get even worse. I'd rather struggle with them on diet restrictions, special formulas, level checks, and appointments for the rest of their lives than feel like I could be hurting my boys in anyway especially by just feeding them... I mean they gotta eat!! Every single year I drag them to the Doctor sometimes even kicking and screaming (*treye )to do a just in case (this Mama's not crazy) level check. These last couple of weeks waiting for those results have made me a mess... it always does but this year so much worse. Both boys have had increasing levels the older they get, and this year was the same... even higher! (I knew I wasn't crazy!) I know the next step won't be easy for all of us especially Treye && Talan but so definitely worth it! We will be headed back to Texas Children next week to come up with a nutrition plan that's best for our boys and getting them where they need to be, to be the best that they can be!! #myboysarerare #phenylketonuria #pku #pkumama