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Eighteen months ago my husband and I were blessed with our second child, Tanner
Michael Streng. Tanner was welcomed by his older sister Kylie, who is 3 years
old, with overwhelming excitement. After Tanner's first week of life we
received a phone call from his pediatrician that he had tested positive for
PKU. Because Kylie does not have PKU we were shocked and devastated to find out
that we were carriers of this rare genetic disorder. After many emotional
months of educating ourselves, we realized we needed to take control of this
situation and determine what was going to be the best way to adjust to this new
way of life, not only for Tanner, but the entire family. We knew right away
that we didn't want to make Tanner feel 'different' because of his PKU and we
didn't want to make Kylie feel 'different' because she didn't have PKU. Each of
our children were special in their own unique way and the real challenge for us
would be to recognize and encourage their individual needs without making the
other feel less important.
With both my husband and I working outside of the home, good organizational
skills are a must. We quickly decided that it would be easier for me to be in
charge of preparing all of Tanner's food and tracking his PHE intake for each
day until Tanner is old enough to become more involved. Because he is a Classic
PKU, we know the importance of strict and proper diet compliance each and every
day. I hope having Tanner involved in the daily activities required to maintain
his diet will encourage a life-time of proper compliance. I always encourage
Kylie to help while I'm making dinner. It may be as simple as putting the
butter on the vegetables or arranging the toppings on our homemade pizza.
Whatever the task may be it has helped to improve her eating habits
tremendously and has helped her to take pride in herself for eating a healthier
diet.
The first thing I did is make a very large purchase from the Tupperware
company. I already have many Tupperware containers with light pink lids that I
use for storing many of the foods Kylie eats. For these new items I purchased
dark green lids. This way I could store all of Tanner's food in the green lids.
Kylie and Tanner now each have their own special containers with their own
special food. This has proven to be very helpful for anyone caring for my
children. It's made very clear that each child can only eat the snacks from the
containers with their colored lids. I've carried the same concept into the
containers I use for Tanner's day care providers as well. All of his food is in
either a dark green dish or a dish with a dark green lid. Even his juice and
milk cups have dark green lids. His day-care providers have expressed on more
than one occasion how very helpful this has been for them. They use the same
criteria there as well. They even found some dark green napkins that they give
Tanner his snacks on because some of his PKU treats look like the treats the
other kids are eating.
Having so many containers does take up a significant amount of space and it can
get tiresome looking through the containers to figure out what is inside each
of them. After about a week, I decided to make several different labels each
describing the contents of each container. Now I just read the labels and grab
the specific one I need. For the PKU Master Pancake recipe I typed the
directions on how to make one pancake on an additional label and attached that
to the container with the dry pancake mixture. The labels have worked out
wonderfully. Another advantage to having ingredients and snacks stored in
separate Tupperware containers is when we take vacations. Rather than having to
take everything from boxes and put into containers just for the trip, I just
pack the containers I use every day. Once we reach our destination, I find a
convenient place to store them and I feel right at home. The air tight
containers also help to keep the contents fresh.
Preparing Tanner's food can be very time consuming. Because of our busy
schedules, it just wouldn't be possible to cook his main meals every day. As
soon as he started eating more solid foods I quickly selected one day of the
week to do my bulk cooking. I freeze enough portions to get me through the
week. I made another large purchase of containers for storage, but Rubbermaid
was the winner this time. And yes, they have small individual serving
containers with dark green lids. I chose Sunday as my day to cook. The day is
spent making goulash, several different casseroles found in the PKU cook book,
mushroom burgers, baked potatoes, sweet potatoes, squash, desserts, crackers
and measuring formula for the week. I use the items that I freeze as his main
dish and then add a fresh fruit and vegetable to each meal. Many of the
desserts freeze great as well. I've also found that measuring out his formula
for each day of the upcoming week has saved time and has been helpful when last
minute over-night events come up. I have a Tupperware container with seven
zip-loc baggies inside. I measure the amount of formula he's required each day
into the individual baggies and each morning I pull a new baggie out using the
formula I've already pre-measured. I empty the baggie contents into a container
and add water. There have been times when we have decided to go away for the
weekend and it has been very helpful to just pull out the number of baggies I
need, open the freezer and pull out the main dishes for a couple days and pack
a few snacks. To help identify the items in the freezer I made labels with
three separate lines identifying the type of food, the weight and amount of PHE
and the date the food item was prepared. Some of the foods will last more than
a week. When I add the next weeks food to the freezer, I like to make sure I
use the oldest food first before starting the newer food.
Making the desserts is a lot of fun for both Tanner and Kylie. I always make
sure that when I make Tanner his cookies we also make Kylie some of her
cookies. Many of the PKU desserts are very tasty so when we don't have time to
make both I make a PKU snack .…. Kylie doesn't mind a bit. Many times she
will ask for one of Tanner's PKU cookies or some other PKU snack. They both
especially like to be involved in the dough making process. They each help
adding the ingredients and when the final product comes out of the oven they
are so proud at what they've made. Of course, they love sampling their work the
best! I've found that when it's Tanner's turn to bring treats to the Montessori
School he and Kylie attend, his PKU treats have been a big hit. Even though the
ingredients are costly, I feel it's important that he is able to share what he
has brought for the other kids. And the teachers and students have been
pleasantly surprised at how good they taste!!
To make the transition into Montessori School easier for Tanner, the teachers
and the students I decided to prepare a mini-lesson plan educating everyone
about PKU and the importance of strict diet compliance. From my earlier days of
teaching I had prepared a lesson plan teaching the four main food groups and
the importance of a healthy diet. I basically modified the lesson plan to fit
Tanner's diet and called it 'Tanner's Main Food Groups'. The lesson plan not
only educates the students about the food Tanner eats but it also stresses the
importance of strict diet compliance. I'm hoping to discourage children from
offering foods to Tanner that he can't have. I feel they need to understand
that this is not like an allergy that has an immediate reaction, rather the
damage is a slow process over a period of time. I've incorporated Kylie into my
lesson plan as a key player in our home in helping to monitor Tanner's diet. I
thought this would help her to know that she plays a very important part in
dealing with Tanner's PKU. I encourage her to never offer Tanner any food
without asking my permission first and to always make sure Tanner does not
drink from her cup or eat from her plate. She has become so comfortable with
this that whenever she sees Tanner put food in his mouth she will ask "is
that PKU food mom?" After I respond yes, she replies, "Oh, that's
good, because you know he can only have PKU food." I always smile and tell
her what a great sister she is to be looking our for her little brother like
that. Tanner senses this and loves his big sister dearly. In our home, or any
home with children on a special diet, this type of involvement helps to give
the child not on diet a sense of involvement and responsibility. Kylie is
wonderful about telling other kids that offer treats to Tanner that they have
to ask her mom first or that he can't have it because he has PKU. Tanner is not
always happy about this, but I'm confident as he gets older he will learn the
same good judgment. Especially with his big sister setting such a wonderful
example!
We recently attended our first birthday party that both of the kids were
invited to. I wasn't real concerned about the food, I would just bring his meal
like I always do, but the cake and ice cream were another issue. I knew when
they served the cake he would be looking for his piece and it would break my
heart to see them pass him by. I decided to call ahead to the place the party
was at and find out what type of cake was going to be served, the color of the
cake and the color of frosting. Luckily, it was white cake and white frosting
and the birthday girl was going to decorate the cake herself with candy
sprinkles. I made a PKU cupcake with white frosting and added some colored
candied sprinkles. When it came time to serve the cake I asked the server to
please give Tanner his piece. It worked out great and nobody even knew the
difference.
Having PKU as a part of our every day lives has affected each of us
differently. Most importantly it has helped us all to appreciate our good
health and to realize that no matter how overwhelming things may appear
initially, with faith, determination, education, and a lot of love, there is no
challenge that can't be met. And there is, without a doubt, no amount of hard
work too burdening to sacrifice the good health of your child. Tanner's PKU has
brought tremendous strength and unity to our family. Many of our family and
friends still feel such sadness for what we live with each day and what Tanner
will live with his entire life. Whenever they express these feelings I
encourage them to feel gratitude rather than sadness. We are very grateful that
Tanner's disease is something that can be controlled and treated. I thank God
every day for allowing me to take such an active part in caring for my child
and most importantly that the care I'm able to provide is the key to his good
health.
I hope sharing a few of the things I have done to make living with PKU easier
for me and my family will also be helpful for you. I have found such great
support from other families living with PKU. The ideas they've shared, the
suggestions for preparing food and the incredible emotional support has helped
me through these past eighteen months more than they realize. I've made some
wonderful life-long friends who truly understand the roller coaster of emotions
experienced by me and my family these many months. But the greatest gift I've
received through all of this is a beautiful, healthy, happy, affectionate,
loving son. If I can give to Tanner even half of what he has given to me or
teach him even a portion of what he has taught me in the short time he has
brightened my life, than I know I will have surely found the perfect way of
telling him 'thank you' through the unspoken words only understood by a
mother and her child.