Dad Takeover!
I asked my dad to write posts for my blog so that parents of children with PKU can see what goes on from a parent's perspective, and also because he's such a dang good writer! Check it out:
"After finally finding a new flavour of formula that Sam would drink, it was back to the routine. Keep in mind, very few companies made this medical formula as it is a limited market. Therefore, there weren't too many choices and some of it tasted terrible. It was also very expensive. We read stories of some places in the world where people just couldn't afford their formula. We were fortunate to have our formula costs covered by our government medical plan.
It was back to trying to expose Sam to as many foods as possible, while still providing her with the correct amount of protein and calories in a day. She was a very picky eater who only ate small amounts in a day. Eating was never a treat for her, and feeding her was a constant battle. Our saving grace was french fries.
Sam enjoyed going into fast food restaurants, eating fries and playing with whatever free toy they were handing out. We had taken fast food fries home and weighed out twenty, two inch french fries and calculated that into her food plan. I don't know how many times we counted out twenty fries that were approximately two inches long for her lunch of dinner. We also amassed a giant collection of chepa plastic fast food restaurant toys.
The Hospital had a "Special Products" store where we could purchase specially engineered low protein (Lo Pro) foods for people with PKU. At that time, we had to purchase these products, and they were very expensive. Unfortunately, we experimented with many foods that she didn't like, and ultimately wasted a lot of money. Later on, our medical system started covering the cost of this specialty food and made it easier fro us to try new things.
However, we did find that she enjoyed the Lo Pro Pasta. Awesome! That made my Italian mother very happy as Sam especially enjoyed the pasta with her Nonna's home made sauce. The Lo Pro pasta became a staple for the rest of her life.
We always had a precision scale at home for measuring food and formula. Later on we purchased a small, portable scale that we could use while being away from home. This made it easier to stick to our meal plans without having to always take pre-measured food from home. We could now actually just weigh her french fires instead of approximating.
We had to go into the hospital on regular intervals for different evaluations of her mind and body. She was constantly being compared by different specialists in percentile to other children her age. Although this was a good gauge of her development, it also made it stressful if she was below average in something...even though statistically, half of people are below average. Kids develop at different rates and this kind of close scrutiny can be difficult on parents.
Someone eventually developed a computer program that calculated food values and tracked meal plans for you. This was awesome and really simplified the process. It made it easier to create and edit meal plans.
As Sam grew up, there were continuous and ever-changing challenges. Fortunately, she was with the same kids throughout elementary school and they were supportive of her diet. She couldn't eat the same as her friends at birthday parties, so we always had to make provisions for that. She couldn't spontaneously stay over with friends or relatives without meal plans being prepared. We couldn't go away for a few days without leaving her with someone who understood her diet.
You always had to plan head for school lunches, eating out, special occasions, travel etc. We always had to think about what Sam was going to eat in every situation.
I guess as she grew up, we were actually fortunate that Sam wasn't a big eater. She saw eating as a necessity rather than a luxury. It was only as she approached adulthood that she really started enjoying more variety of foods. We were also fortunate that she was never tempted to cheat, or go behind our backs eating foods she shouldn't. We always stressed how important that was and fortunately, she bought in.
We were also fortunate to have a beautiful, intelligent, fun, kind, talented, well rounded kid who has blossomed into an amazing young woman. As much as PKU and food management was a major part of her life growing up, it is now just something in the background. It is NOT what defines her. SHE defines her, and we love her more than ever.
BTW...she still loves french fries."
