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.



Wednesday, October 12, 2011

Cincinnati Down Syndrome Clinic

Today we are headed to the Down syndrome clinic at Cincinnati Children's Hospital.  The have a clinic, doctors and therapists all dedicated to just Down syndrome patients.  We went last year and are happy to return and get a check up! 

So we went to the clinic, then on to the zoo, then to Jungle Jim's and then Ikea!  It was a fun but long day!




At the Down syndrome clinic we met with the team that consisted of a pediatrician, physical therapist, speech/feeding therapist, social worker and normally an occupational therapist but she was out today.  So they all met Will and played with him.  They took turns trying to get him to do different things and then 'graded' him on the stardardized scale.  Have I ever mentioned how much I had standardized tests!  They are unfair:(  I realize they are just a tool, but it just doesn't seem fair to reduce all Will has accomplished to what he will do for complete strangers in 1 hour.  It took him the first half hour just to warm up to them!  Again I know though that they are just a tool and necessary to see where Will is in his development.  So he actually rated well in gross motor and was at the 14 month range and she was very happy with his walking, cruising, standing, crawling and ball throwing.  He rated a little lower in fine motor and fell at the 12 month range.  She said he had good skills but got knocked for lack of isolating his finger consistently.  She did say that she was happy to see him starting to point to things that he wants, which is a huge developmental stage.  In speech  he got a 12 month rating for receptive language for the things he understood.  She ask him to put things in and hand things to her, and mostly he complied.  She also tested to see if he knew what to do with a baby doll and if he pretends with play cups for example.  He did pretty well with these, so I was surprised that he wasn't higher, but for some of the commands he was just being stubborn!  He knew just what to do with that baby doll though, thanks to Ava and Lillian, and hugged it right away.  He can be such a sweet boy:)  His expressive language was his worst test and the one I expected the worst score for.  He is only testing at the 9 month stage since he has almost no words, and they don't count signs for this test:(  She was encouraged that he has been babbling more and liked how he made the 'vroom' sound while playing with the cars and reminded me that above all delays in children with Down syndrome, expressive language is the most delayed.  The all had great suggestions for us and gave us many new things to work on at home.  The team as a whole works so well together and individually they are great doctors and therapists.  We are lucky to have them so close.  Although it is discouraging to hear these numbers, I know we have lots of good resources at our hands and that all of this is to be expected.  Oh and they all thought he was cute too:)

1 comment:

unc ricky said...

william didn't throw the doll?! we need to work on this. sounds like a good day in the nasty. love the giraffe pic. i think ron forgot to shave off his vacation beard...