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.
In honor of Down syndrome awareness month I would like to tell everyone about two exciting documentaries.
The first is 'Monica and David'...it is a documentary about a young couple whom both have DS and it follows them as they get married. They are amazing individuals and I look forward to viewing it soon with some friends from our support group. It airs on HBO on 10.23.10 at 9:30 AM ET and 10.26.10 at 2:15 PM ET. http://www.monicaanddavid.com/
The second is 'Brave in the Attempt'...it is a documentary about people with disabilities and why many are fearful and uncomfortable around them. It follows a Special Olympics basketball team in their quest to win gold. It airs on the Documentary Channel which is on Dish Network Channel 197 and Direct TV Channel 267 at 8:00 and 1:00 AM on 10.21.10. I don't have access to this channel but if anyone does and would be willing to burn it to a CD, I would love to view it. http://www.documentarychannel.com/movie.php?currID=9008&t=Brave-In-The-Attempt
Both of these documentaries are important because they look more closely into the lives of individuals with disabilities and show us that they are more like us than they are different. If we all tried to see how these amazing people are like us, instead of how they are different from us, the world would be so much better for all of us. I know it is hard to do this at times but I challenge you all to try to do so, and reach out to someone in your life that may have a disability and talk to them. I struggle with this at times too because it is sometimes difficult to come out of our comfort zone and reach out. Since Will has been in my life I have gained a whole new perspective. Now I always try to keep in mind that these individuals are someone's 'Will'. Someone out there loves them and for this reason alone they deserve our respect.
Sorry it has been so long since the last post...we have been so busy! Will is doing many new things and has had lots of fun along the way:)
So since the Buddy Walk...we have been meeting with several new therapists with Franklin County as part of our Home Based Services Program, working on playing with different toys, visiting with family and friends, getting used to our ear tubes and working on some teeth! We are still meeting with our private therapist too and we are making some good progress. Will is getting himself in and out of sit often now and getting closer to crawling. He is starting to not mind being on all fours and is rocking back and forth a little while doing so. He and daddy have been playing the piano together and he rolls his truck back and forth with me and with Ava and Jonas. We had a minor set back on the ear tube front and have been using eardrops again to fight a little infection. We have also been battling a rash around his face, but mostly we have been pretty healthy this fall. We went home to see Papa and Gaga Brough and to attend a cousin's wedding and we visited the Fort Wayne Zoo while we were there. We also met with our friend, that is also a PT and a great mom, and got a lot more new advice from her. Oh and a little white tip of a tooth is showing! You can't really see it yet, but you can feel it:)
Our therapies are really getting going with the Franklin County Board of Developmental Disabilities Home Based Program (from here on we will call them FCBDD!) We have met twice with Will's Early Intervention Teacher (Teacher) and Physical Therapist (PT) and once with the Speech Therapist (ST) and once with the Occupational Therapist (OT). We really like them all and they have given us a lot to work on:) His Teacher oversees Will's Team and works on things like using toys correctly and playing baby games and generally has input on all fronts. The FCBDD PT is working on many of the same things that our private PT is working on, and that mostly involves getting in and out of sit, getting on all fours and putting weight on his legs. The ST gave us some games and activities to play with Will to encourage different sounds and some massages and exercies to use to build up those oral muscles. The OT had the most new activites for us to work on ranging from drinking and eating exercies, to building up core muscles, to using different methods to gain sensory recognition. It has all been a lot to take in and is cause for my crazy mind and busy feet!
We had a great weekend in Fort Wayne and saw many friends and family. We had a fun trip to the Zoo with Gaga and the kids. Will liked the lions and the giraffes but otherwise just enjoyed the ride:) He did NOT enjoy the huge draft horse that 'neighed' in his ear and casued a major meltdown. It seems everything is a lot louder now to Will, and he frightens more now than he did pre-tubes! We had fun getting pumpkins at the local farm too and even ate some straw...which I hear is good source of protein:)
We still have not made much progress with drinking and eating and we are getting lots of mixed advice about it. Will is still not a fan of any vegetables...which I suppose is karma rearing its ugly head! I love vegetables now...but did not as a kid. He still struggles to get food from his fingers to his mouth although he is getting better. He refuses to swallow anything liquid we put in his mouth unless it is by bottle. He spits and sputters and gets really mad when we squeeze the juice box with water in his mouth. If not karma...red-headed stubborness is rearing its head:)
We have a lot more coming up in the next several weeks with therapies and appointments. We also have a playgroup at the pumpkin patch and a Bartosch family cookout this weekend. We are then heading to Siesta Key FL for a much needed family vacation next week. So it may be a couple weeks until you hear about all that is new with Will, but we will be rested and renewed when we get back and hopefully be sporting a new tan!
Buddy Walk 2010 was a huge success! Team 'Will's Way' raised $2100 for DSACO thanks to all the support of our wonderful family and friends. Thank you!
The first picture is of our playgroup friends, the second picture is of Team 'Will's Way', and the third is a family picture after the walk:)