Right now you maybe looking for someone to tell you that it will be okay, and it will be.
Or maybe you are looking for a picture of what a day in the life of a PKU baby/child is like.
Or maybe you are just curious as to how someone else is handling it or how they handled it when they found out.
Well perhaps you will find an answer here or maybe not but either way please feel free to comment or ask me questions.
That moment they told us he had a condition with a big long name that I couldn't even pronounce I felt something inside of me break, I don't mean to sound melodramatic but maybe it was everything else that was going on but when they said he has Phenylketonuria I felt my world freeze. I came home and let all that emotion pour out of me, I cried and I worried and I didn't even really understand what I was worrying about because I barely heard or understood what they had told us.
I think it wasn't until a few days after we had our big information appointment with his team that I started to understand that this was going to be a huge part of our lives. I started to worry about all the things I thought I would worry about as he got older. I worried about my little newborn feeling left out at holiday dinners, him getting bags of Halloween candy that he couldn't eat, worries about school, and worries about sports.
A big part of me not regretting all the worries I had back then is the fact that I had many fellow PKU parents advise me not to let fear and worry rob me of the time with my newborn. I feel that after my initial panic receded I was able to separate my worry from my joy & excitement. I let myself have times of worry, times where I snooped through the pictures and stories on the Facebook support groups. More importantly I took the time to make sure I remembered to make memories that had nothing to do with PKU.
You may wonder about the blood work aspect of things, how will you get the heel pokes done, or how will you get the results, or how will you handle the results if they are less then ideal. Well each clinic does it different I think, but after a few heel pokes at home we realized that it wasn't as bad as I dreaded and although sometimes they were terrible they also kept him healthy. Never did I imagine I would have a two-year old who actually is fascinated and helpful with his finger-pokes! Hang in there!!
Maybe you worry about the formula they have to drink, I know I did. What if he doesn't like it, what if he doesn't drink as much as he should, what if, what if....what if it all goes smoothly? I will admit I stressed a lot about formula. What if he wouldn't drink it from anything but a bottle? What if he went on a formula strike? What if he hated the new formula he had to transition to after the first year? Well I started introducing the cup with a straw filled with formula in it when we started solid foods and hey, he loves his formula just fine!!!
Have we had bad days? Oh yes, I mean come on, he is a toddler now so if we hadn't had bad days then I would be shocked. Days when he wants more then he can have and he isn't yet at an age where I can explain why he can only have this, this or this.... he simply wants what he cannot have. In a way we are very fortunate that Luke has a distrust of new foods and generally even when given a new looking food he simply wont eat it. We find our ways around it.
More blog posts to come soon about recipes and how they still intimidate me every time I look one up and also a post about the day home and how I feel it has impacted our experience with PKU.
Or maybe you are looking for a picture of what a day in the life of a PKU baby/child is like.
Or maybe you are just curious as to how someone else is handling it or how they handled it when they found out.
Well perhaps you will find an answer here or maybe not but either way please feel free to comment or ask me questions.
* * *
That moment they told us he had a condition with a big long name that I couldn't even pronounce I felt something inside of me break, I don't mean to sound melodramatic but maybe it was everything else that was going on but when they said he has Phenylketonuria I felt my world freeze. I came home and let all that emotion pour out of me, I cried and I worried and I didn't even really understand what I was worrying about because I barely heard or understood what they had told us.
I think it wasn't until a few days after we had our big information appointment with his team that I started to understand that this was going to be a huge part of our lives. I started to worry about all the things I thought I would worry about as he got older. I worried about my little newborn feeling left out at holiday dinners, him getting bags of Halloween candy that he couldn't eat, worries about school, and worries about sports.
A big part of me not regretting all the worries I had back then is the fact that I had many fellow PKU parents advise me not to let fear and worry rob me of the time with my newborn. I feel that after my initial panic receded I was able to separate my worry from my joy & excitement. I let myself have times of worry, times where I snooped through the pictures and stories on the Facebook support groups. More importantly I took the time to make sure I remembered to make memories that had nothing to do with PKU.
You may wonder about the blood work aspect of things, how will you get the heel pokes done, or how will you get the results, or how will you handle the results if they are less then ideal. Well each clinic does it different I think, but after a few heel pokes at home we realized that it wasn't as bad as I dreaded and although sometimes they were terrible they also kept him healthy. Never did I imagine I would have a two-year old who actually is fascinated and helpful with his finger-pokes! Hang in there!!
Maybe you worry about the formula they have to drink, I know I did. What if he doesn't like it, what if he doesn't drink as much as he should, what if, what if....what if it all goes smoothly? I will admit I stressed a lot about formula. What if he wouldn't drink it from anything but a bottle? What if he went on a formula strike? What if he hated the new formula he had to transition to after the first year? Well I started introducing the cup with a straw filled with formula in it when we started solid foods and hey, he loves his formula just fine!!!
Have we had bad days? Oh yes, I mean come on, he is a toddler now so if we hadn't had bad days then I would be shocked. Days when he wants more then he can have and he isn't yet at an age where I can explain why he can only have this, this or this.... he simply wants what he cannot have. In a way we are very fortunate that Luke has a distrust of new foods and generally even when given a new looking food he simply wont eat it. We find our ways around it.
More blog posts to come soon about recipes and how they still intimidate me every time I look one up and also a post about the day home and how I feel it has impacted our experience with PKU.
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