On November 18 2009 at 4:02 am William Alan Bartosch was joyfully welcomed into our family. He weighed in at 7 lbs 9 oz and 20 in long. We were stunned to discover that he was born with Trisomy 21, or Down syndrome. We love him unconditionally from the top of his toe-head to the tips of his toes. We know that this diagnosis will not define him. He is a happy, healthy little boy that just happens to have an extra chromosome.



Follow us on this unexpected and exciting journey as we learn how to live life Will's Way.



Friday, October 7, 2011

Some Apple Juice A Day Keeps the Doctors Away

About 50% of the individuals with Down syndrome have heart defects, about 25% if not more have thyroid issues and about 10% have gastrointestinal tract abnormalities present at birth.  Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.  About 80% of adults with Down syndrome live to age 55 and beyond. 
Will was lucky to avoid both the heart and gastrointestional issues but does have hypothyroidism.  It is complicated for me to explain this since I barely have a grasp on it...everytime we see his endocrinologist I have her explain it again...but essentially it means that he is not producing enough thyroid hormone so his thyroid has to work extra hard to get its jobs done.  And I stress the jobS part.  The thyroid is very complicated and the type of hypothyroidism that babies with Ds have is a little different than most hypothyroidisms.  So we see the endocrinologist every 3 months.  We are on our second endocrinologist.  The first one really confused me and drew funny pictures on papertowels and I just didn't connect with him.  When I left, I was unsure if Will needed thyroid medicine or if my car needed an oil change.  The new endocrinolgist is much better.  She is very clear and concise when explaining everything to me and has great bedside manner.  For now Will is on daily thyroid medicine, which is really not affected our life like I thought it would.  It wouldn't have been an issue at all, except that because of the way thyroid medicine is absorbed, they only offer it in pill form.  Since Will can't take a pill yet, I had to get creative.  So with some help from another mom in our group that also has a kiddo on thyroid medicine, I figured out a way to crush it and put it into the end of a baby syringe, then suck up apple juice to make my own liquid concoction.  Most days he takes it without compliant and sucks the juice out.  Otherwise though, Will is a very happy, healthy, growing boy that likes to get into things and make messes and hates to get clean.  Pretty typical:)

2 comments:

Unc Ricky said...

"...or if my car needed an oil change"...hilarious. you can barely tell that's ron's child in that picture.

papa said...

sorry andrea that pic is all ron jr.