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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.