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.

Thursday, June 17, 2010

Down Syndrome Clinic

Will went to the Down Syndrome Clinic at Children's Hospital this week. We met with Dr. Nash, a physician that specializes in developmental disabilities and sees patients with DS in the clinic once a week. It was a good chance to have another doctor examine Will and evaluate him and also have him seen by an Occupational Therapist, which is the only therapy discipline that we have not met with yet. We had received alot of negative feedback from other families in our support group about the clinic but wanted to check it out for ourselves. We like Dr. Nash. She was very sensitive and compasionate and did a very thorough exam of Will and a thorough interview with us. She was very happy with his development so far. The Occupational Therapist did an evaluation as well. She assessed him on how well he could grab and hold objects and rated him on which types of objects he held and for how long. She was also happy with his development so far and thought he would benefit from visiting with her once a month so that we could get her feedback on what types of activities we should be working on at home. So she generously offered to fit Will into her schedule so that we could avoid the dreaded run-around with the Children's Hospital Therapy waiting list:( We like her already!!!
We do see how the clinic needs some work. We were told 3 different appointment times and informed that we should arrive 15 minutes early, only to get there and find a dark office and no one there yet. Then, once we watched the staff walk in and finally got into the exam room, we waited and waited and waited some more. We were there for over 3 hours! Poor Will missed his nap, his breakfast and went through all the daipers in the diaper bag:( So we had to beg the nurse for one! We appreciate that there is such a clinic right here in Columbus that it will be a good resource for us and Will, but can see that it is under-staffed, under-funded and under-organized. We will continue to visit with Dr. Nash at this clinic on a yearly basis and hope it gains some speed, but we are also hoping to check out the Cincinatti Down Syndrome Clinic.
We finished off the day in the heat and sunshine at the Columbus Zoo. It was hot but a lot of fun:)

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