Michigan PKU

JohnL

Well, I just wanted to update a little. Bethany went to the week long overnight diabetes camp. Everything worked out great! She had an awesome time. Sandy had gone over the daily menu and marked the low-pro items (fruit and veggies) that Bethany could have. We then took in formula and food (lp-pasta, tortillas, mushroom pockets...) every morning for the day. The cooks were great and worked with us preparing Bethany's food. She then went through the line with all the other kids and was able to pick from the buffet the things Sandy had indicated on the menu plus her own food. Nobody made a big deal over the fact that she was eating differently. It may have helped that one of her consulars had celiac disease (no wheat) and the other was lactose intolerant. Not PKU, but still they understood, a little, the necessity for different diets.  

Sandy and I were nervous, but all in all it went great. Bethany is already planning on going back next year.

Tags: camp | story | pku

JohnL

An update to our first little blog above. Its now 2009 (time really flies) and we have another member to our family, Angela.

Angela was 3 when we adopted her and had numerous medical issues. Now she is doing awesome and Bethany and Angela are best friends --most of the time-- ;)

In the mean time Bethany has continued growing and has had some changes to. She was diagnosed a type 1 (juvenile) diabetic. This brought some additional complications to our life--and hers. It has also changed our perspective some. The diabetes requires constant monitoring (just a few weeks ago we had our first ultra-low blood sugar and Bethany passed out--very scary) and consumes much of our attention. At the same time PKU has become a routine. Just a way of life. We have always maintained Bethany's Phe levels very strictly in the recommended range, and continue to do so. And, although the diet still takes a lot of time (Sandy is sooo good with baking low-phe stuff for Bethany), we do not really worry about it.

Bethany is doing so great, even with these things. She is on a swim team which practices 3 nights a week, she loves softball and was just invited to participate in an all-star tournament, and she made the honor roll at school this year. Its amazing how kids are so adaptable--she takes it all in stride. Often times, I feel sad that she has to put up with all these things, but such is life. She really is my inspiration.

We do have a new adventure this year, Bethany is going to overnight diabetes camp for a week. She is only 8 and Sandy and I are a bit nervous. Apart from the camp thing and being away from home--there is the PKU diet that they do not know anything about. They are very good with the diabetes there, but they do not really have a clue about a PKU diet. Their snacks are all low sugar (Nutrasweet) and high protein (good for diabetes--not so good for PKU). Sandy has the camp menu and is checking off OK foods and sending in substitutions. It will be an experience.

We are doing the camp in-spite of our concerns because we decided early on that we would never ever say she could not do something because of PKU.

 

Tags: story | about_us | pku