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

JohnL

John, Sandy & Bethany LaPrad

2004

I guess we should start here. John and I are later in life parents and were thrilled with our pregnancy. After 2 miscarriages we were cautious with this pregnancy and after 2 months of bedrest, and coming a month early, Bethany Joy LaPrad was born in August of 2000. What a beautiful baby! We went home knowing the Newborn Screening had been done and didn't think anything about it. 

The first call came telling us we needed to return to the OB unit to have the Newborn Screening repeated. They reassured us that there were alot of false positives and we shouldn't be worried. We returned, and although I showed the clerk the address where the repeat screening should be sent, she told me they did lots of repeats and she didn't need the form. A few days later we received another call telling us to come back in for a repeat screening. Yes, a third poke to the heel. Seems the first repeat was sent to the state and not to the Metabolic Clinic. We made the third trip and at about 8 days of age Bethany was diagnosed with PKU.

Oh, how our lives changed! So many thoughts went through our minds- will she be "normal", will she have a musty smell, skin problems, gait problems, speech delays? The dietician reassured us that any goal we had for Bethany would not be hindered by her PKU. We were skeptical and asked LOTS of questions to anyone who might know something! We were thirsty for knowledge. 

Our first real reassurance came when she was 5 months old and we attended our first Winter Gathering for metabolic families. She was the youngest one there and we were able to see for ourselves that PKU kids are the same as any other kid. Running, playing games, quesioning, testing, and eating foods that looked very similar to our foods.  Whew, we felt so relieved! We felt that we would be able to handle this after all.

Bethany is now 4 (When Sandy wrote this in 2004) and has achieved all of her milestones. She swims, takes ballet, counts, colors and is starting preschool in the fall. She told me at 2 1/2 yrs of age that her milk comes from the blender and that she has PKU. She is able to understand so much already about her diet and how she will need to eat. As parents we feel that the best we can offer to her is a normal childhood full of memories of the boat, gardening, pets, fun and experiencing all that life has to offer. Her diet will always be a huge part of her life and the day will come when she is managing it on her own. The best thing we can do for her is to provide her education about her diet and encourage her to make good decisions and love her no matter what.

Tags: about_us