Sunday, November 7, 2010

Play dough and PKU

A week and a half ago, My mother-in-law called and asked if I would be interested in flying to Chicago (Wheaton to be exact) to assist her take care of Lucy, JT, and Eli (Caleb's brother's kids). I checked my schedule and sure enough, I could make it work. So, 5 days later I was on a flight to Chi-town getting ready to surprise my nieces and nephews. I told Kimberly and Josh (My in-laws... PS, i hate the word in-law... it sounds so judicial) to keep my arrival a secret, i really wanted to surprise them. Gina (mother in law, Caleb's mom, marriage mama) and I arrived and grabbed a cab to the house... Our cab driver wasn't the most friendly taxi-driver I have ever met. He wanted NOTHING to do with us! He pretended like he didn't speak English when we asked him if he could swing through a McDonald's/anything we were starving but, managed to understand directions perfectly! Strange huh? Anyway, I had him drop me off a block away, then I walked up for my grand entrance. I pictured in my head kids squealing AUNTIE HILLY... big hugs all around, tickle fights... NOT SO MUCH! I got a scared look out of the kids and a timid hug, Maybe they weren't even sure who I was?! After about an hour of so, they warmed up. I did have to prove my coolness with some doll-playing/play dough/coloring/whatever they asked me to do! :)

Josh and Kimberly took their newborn Ruby with them to Baltimore, which left the other 3 for Gina and I to play with. Ruby was absolutely precious.

She was born with PKU as well as their 3rd child Eli. PKU (phenylketonuria), in its classic form, is a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. When treatment is begun early and well-maintained, affected children can expect normal development and a normal life span. only treatment is a very strict diet that limits the amino acid, phenylalanine. What does that mean for Eli and Ruby??? It means these brave little ones get a blood test weekly that their mother administers and sends away to doctors to be monitored. The "treatment" is a diet.

Diet. The diet for the most severe form of PKU, called classic PKU, eliminates all of the very high protein foods since all protein contains phenylalanine. This means that all concentrated sources of protein must be eliminated from the diet in order to limit the amount of phenylalanine. Except in rare circumstances, the diet does not allow consumption of meat, fish, poultry, milk, eggs, cheese, ice cream, legumes, nuts, or many products containing regular flour.
A synthetic formula is used as a nutritional substitute for the eliminated foods. This formula is very expensive.
The diet is supplemented with special low protein foods and weighed or measured amounts of fruits, vegetables and some grain products. These foods are allowed in quantities that suit the individual child's tolerance for phenylalanine; some can have fairly liberal diets and still maintain good control of blood phe, while others must have a very strict diet.

So, you can imagine now why Gina wanted my help with the kids. Three kids is hard enough, now we had to do this pku thing. Sweet Eli is so great, and for the most part drank all his "milk" for us and the food that we gave him. We made it just above 200mg of phenylalanine almost every day which was our goal. Lucy and JT of course know the diet well and were very helpful coaching Gina and I on the diet. Can you imagine a day in the life of sweet Kimberly? Four kids under the age of 5,  Two with a very demanding disease. Did I mention that her husband and JT are gluten intolerant!? Talk about WONDER WOMAN! I am so in awe of her! :) We really did just have the best time. I cried leaving the kids, they are so precious.
Grateful for family and airplanes.

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