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, January 22, 2010

Will is 2 Months Old

We can't believe it has been 2 months since Will came into our lives! We have been busy!

Will is doing very well. He is smiling and cooing and holding his head up more and more. He is up to 10 lbs and grew 1 whole inch since birth:) He is eating and sleeping well (thank goodness)!

He had an appointment with a Geneticist last week. This meeting was to confirm his diagnosis and tell us which type of Down Syndrome he has and to talk about the risks for possible siblings for Will. Will has the common type of DS, Non-Disjunction Trisomy 21, and this type is not genetic. This basically means that somewhere along the way some of Will's cells did not divide correctly and so he received an extra copy of the 21st chromosome. Although doctors don't know exactly why it happens they do know that it is spontaneous and unpreventable. Which is both comforting and scary! It is amazing to me that there are so many babies born with the correct number of chromosomes:)

We met with Help Me Grow again this week and although they said he tested well they do want to get him started with some therapies. We will meet next month with a Developmental, Physical, Occupational and Speech Therapists. We have been so blessed to have had some wonderful friends that are therapists reach out to us and get us started with some excercises and activities. So Will gets daily workouts and seems not to mind too much. Thanks Holly and Sarah!

I am ashamed to admit that until 2 months ago, like many others, I had only a passing knowledge of what it means to have Down Syndrome. So I am going to share some of the facts I have learned along the way.
Down Syndrome is the most common chromosomal anomaly and occurs 1 in every 733 births, there are approximately 5000 babies born with DS every year and it affects about 350000 people in the US.
80% of babies born with DS are born to women UNDER the age of 35...though your chances of having a baby with DS increase AFTER the age of 35.
Common features of people with DS are the flat facial features, larger than normal space between their first two toes, curved pinky fingers due to a missing joint and a single, deep crease across the palm of their hand.
Individuals with DS have widely varying degrees of functioning and most children attend mainstream schools, participate in typical extracurricular activities and have the full range of feelings and emotions. Many adults with DS attend college, have jobs and live independently.
DS is named for a man that published the first accurate description of the syndrome. His name was John Langdon Down.

To learn more about DS visit http://www.ndsccenter.org/, http://www.ndss.org/ or http://www.dsaco.net/ . To read heart-warming and inspiring stories written by mother's of babies with DS read 'Gifts' by Kathryn Soper. It is a wonderful book. It changed my whole perspective!

1 comment:

joe said...

Hello! Any news I need to hear about? Would love an update anytime!