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, April 15, 2011

Spring!

So glad spring is here!  We enjoyed some time at the park this weekend and even sat down in the grass:)

Oh this tickles...

Maybe I'll touch it...


Oh look my shadow!

Will has been enjoying the swings at the park and a few chilly walks as well.  He is standing and cruising more each day.  He had Orthodic inserts put into his shoes last week so we will see if those help.  Most kiddos with Ds end up with some sort of Orthodic support.  The ones his PT wanted to try are the least invasive since they are just basically over-the-counter inserts for babies.  The hope is that it will just give him a little more support when he is standing and begins to walk.  His PT also put him on the treadmill last week!  It was really cute and funny:)  He looked like a little drunk sailor, but did a decent job keeping up with the treadmill.  He complained the entire time, but kept walking...similar to what I do on the treadmill!


Here he is jamming with his play table!  The PT still wants him to have some time without shoes to get input there as well.  He loves to stand and play at this little table! 



I also recently attended a workshop on Oral Motor Therapy by a company called Talk Tools that was given by the Oral Motor/Ds Feeding Therapy guru, Lori Overland.  The basic idea with OM Therapy is to use specific placement of food, utensils and tools in a theraputic way to promote skills used for proper feeding (and drinking in our case!) and for speech clarity.  Since children with Ds have low muscle tone, this program has been shown to help kiddos with feeding and speech problems and improve mouth posture by strengthening the oral motor muscles.  It is a very interesting, controversial and expensive approach.  Few speech therapists are trained in the specific techniques taught by the woman that developed the program so our limited options are to buy her expensive book/DVD, find 8 other families interested in having her come to Columbus to evaluate their child and also pay the very expensive fee associated with the eval or possibly finding someone more local (there is a ST in Indy that was trained by this woman) and have them evaluate Will and give us a therapy program.  It is thrilling to know that there is someone out there that may really be able to help Will with his 'drinking problem' and also improve his mouth posture and speech along the road, but EXTREMELY frustrating to not have access to the information!  So I find myself at a loss and also on a wild goose chase:(  Anyone that knows me well, knows how much I love a good chase!  For now I have written our local Down syndrome group to see if they would be willing to buy the book/DVD and let me borrow it for awhile:)

Look at that good mouth posture...Lori Overland would be so impressed!!!  Haha:)

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