INFORM, INFORM, INFORM

Trusting someone to care for your baby is hard.

Trusting someone to care for your PKU baby is really hard.

Hardest thing for me as a working Mom, was to leave Boston and go back to work. How could anybody care for my sweet boy like I do? How can I trust that someone will take his diet seriously? How do I know they will be honest with me if he does eat something he’s not supposed to? These first few years are crucial in brain development, so its important we find dependable people to take care of them.

Some days I feel really guilty that I cant stay at home with Boston, and then I’ll have a whole Friday with him by myself. All I can say is “stay at home moms are the most underpaid overworked individuals on the planet!” The amount of patience you have to offer your sweet babes, I mean hats off and kudos to you because y’all are my superheroes! I truly love my job (which is rare) and wanted to return not only for myself but for financial reasons as well. As many of you know the PKU diet is not cheap. But that’s another story for another day. Today I want to offer you a small piece of advice when trusting your PKU babe with a sitter or a daycare facility.

INFORM, INFORM, INFORM!!! Let them know the reason ”why” you need them to keep every ounce of formula made, every drop of baby food, every puff — even if its fallen on the floor. While you are informing them also let them know your aware that mistakes happen, you just simply need them to be honest with you. We are humans and we do mistakes. Most important thing is to establish a good relationship with them so if something happens they feel comfortable enough to be honest with you.

 

Here is an example of what I typed up for Boston when he first went to daycare, feel free to copy it and use it with your baby as well.

Boston Barrett

PKU information

PKU is a rare genetic disorder. This means Boston has special dietary requirements that are very important, but is otherwise healthy and can do anything else that other children enjoy. Boston CAN NOT break down the amino acid phenylanine which is found in all foods containing protein and aspartame. His formula gives him the protein he needs without the phenylanine , which gives him the nutrients he needs to grow.

At this stage Boston is an infant he has a certain formula that he must drink. His formula is mixed for a 24 hour period so PLEASE DO NOT throw any away. The formula can be out an hour and then it should be returned into his mixed formula bottle for the remainder of the day. If for some reason he eats over the amount of formula I have provided; use the formula PKU Periflex (1 scoop is equal to 1 oz.)

As Boston progresses into baby foods and solids, it’s very important that what he doesn’t eat gets returned to his lunch box.

Here are some key points about PKU:

  • PKU is a genetic condition that is NOT contagious
  • Apart from needing a special diet he is perfectly normal in activity and development.
  • If the phenylanine builds up in his blood it can lead to damage to his developing brain, causing mental retardation and seizures. SO it is very important he DOES NOT eat anything that we have not provided.
  • Staying on a low protein diet keeps his phenylanine levels in a safe range to avoid brain damage.
  • Eating the wrong foods will not make him sick right away, but will cause long-term problems. If for some reason he does eat something he is not supposed to please call us so we can adjust his diet to help lower his levels. We understand accidents happen but it is so very important that we avoid it ALL cost.

We are happy to provide snacks and treats for him that are specific to his diet so when special events are celebrated please let us know and we are happy to bring something specific for Boston.

Please call us if you are unsure if Boston should or should not eat something.

Thank you,

Cody and Chelsey Barrett

(Provide y’alls contact information here)

My husband, Cody, and I went over all of this information with his teachers and gave them time to review this sheet and ask any questions. They have this sheet taped throughout his classroom. If you have a sitter you can also tape this on your fridge after reviewing it with them.

Hope this helps!

4 thoughts on “INFORM, INFORM, INFORM

  1. I just wanted to say thank you for all of this. My sister just had a baby diagnosed with CPKU. It was heart-wrenching at first; scary. On the flip-side, God has been ever faithful in speaking to our hearts, and allowing peace to move in. We are a very close family, so I have done everything I can to be involved and be there for support in any way. This blog will be a blessing to our family. Many prayers and blessings to you and your sweet family!

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    • Gwen,
      I am so glad you find this blog helpful. People like you are exactly why I wanted to do this. I know how hard this adjustment has been for your whole family. Praying for your family!

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  2. Way to go Gwen! That’s awesome and I can totally relate. I’ve got a 14 month old with CPKU and although he is with family during the week, the guilt of working is brutal. This may sound weird but I feel if I can afford a ton of that medical food which gives him things he doesn’t have to count that are normal like cookies and chips, then I feel I have control over at least something to make his life better….and that’s what makes it okay to not stay home for me. My only problem now is that I run out of energy and time to cook and bake all these things others Pku moms are lol! I’m so happy you started this blog! When Brody was diagnosed I should’ve been admitted to the psych ward and if I would’ve found your blog it would’ve made a HUGE difference. I just needed someone to say, “chill out, it’s a bad day but it’s certainly not the end of the world” 🙂

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    • Well my LO has CPKU and is just 12 months so he is a little younger. I remember the first two months were so hard for me. I just wanted to help others mommas know its ok to feel that way and it will get better. What helped me so much was meeting other PKU parents and other people with PKU. Blessings to your family!

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