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| Swimming |
I never thought it would happen but we finally feel like we
are starting to fall into the groove of our new normal. Paul is a different kid than he was a couple
of months ago which is such a blessing to see him finally happy. Of course, it is not perfect but we are
beginning to have a life again. He is
able to tolerate going places so much better now. We have been at the zoo, hanging out with his
cousin’s from Florida
and even swimming at his Grandma and Grandpa Gautraud’s! I know this doesn’t seem like a big deal but
to us it is. I call them inchstones!
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| The crew at the Zoo ... P had to leave to an apppointment =( |
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| At the zoo with Mimi! |
One of the major contributing factors to our new found
freedom is that we are “unconnected”.
Paul used to be attached to a feeding pump to would continuously drip
food into his belly almost 24 hours a day and it was HORRIBLE. He gagged, wretched and vomited about 8-10
times per day. SOMETHING HAD TO CHANGE! So, with the encouragement from
some other awesome mom’s and support of some amazing doctor’s and dieticians,
we optimistically began what the tubie community refers to as a pureed or blenderized diet.
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| Pauly and AJ |
All I can say is YEAH for blenderized diets!!!
It has made such a difference in our
lives!
We basically take food that Paul
would or should be eating if he were normal (whatever that means) and puree
them to a consistency that can go through his G-tube.
It is thin enough to pass through the tube
but thick enough to make it much harder for him to reflux!
He gets 5 bolus feeds a day of this mixture
of meat, fruit, veggies, rice cereal, oil, sugar, sodium and vitamins.
The smell kind of makes me gag but he keeps it
down most of the times so it is waaay worth it!
We are beyond blessed to have doctors to are very passionate and
researching the benefits of this type of diet for their kids!
Psychologically, I feel a little more normal
feeding him real food and doing what a mom is supposed to be doing!
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| Breakfast! |
Pauly has changed me in so many ways and taught me things
that you could never learn in any classroom.
He has showed me how to make the choice to be happy even when I have
every reason not to be. Today, I look
back and see how far we have come and remember the days when I just wanted to
curl up in a ball and give up.
He taught me how to keep swimming and eventually that we would see land. Love that kid!!
