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.

Tuesday, March 23, 2010

Three Little Leprechauns

Our session with Help Me Grow went well. Will received lots of praise for how well he is doing in many areas and we got some good ideas on new activities to work on. The physical and occupational therapists were concerned about him still favoring his right side so they gave us suggestions on how to get him to grab for toys and look towards objects on his left. They also gave us ideas for working on his head control other than just tummy time. This was helpful because William does not always love his time on his tummy. The speech therapist was pleased with his mouth posture and his babbling and gave us some resources to help get us stared on sign language. Mostly it was a good day and Will loved being fussed over by all these women!
The disappointing news with Help Me Grow was that we will have to wait at least 60 days to get another therapy session at the clinic because we are actually on a waiting list for regular home services. They told us that we may have home services start for Will by this summer but until then we are looking into private services. The major down side to the private services is, of course, the cost, and also that there is a waiting list for these as well. We hope to get started with at least physical and speech therapy through Children's Hospital or Easter Seals, whichever can get us in faster.
Will's well baby check was great as well. He is up to 12 lbs 12 oz and 24 in and doing very well. He got more immunizations and a thorough check up. He started a small amount of oatmeal cereal this weekend and likes it so far. We may see if he likes peas next!
His vision screen went well too. The appointment itself took about 10 minutes but we were there for over 2 hours, so it was a lot of waiting on Will's part. They mostly checked to see if he followed objects and lights and then they dialated his eyes and looked at them under the lenses. He was a trooper through it all and slept it all off on the way to Fort Wayne that afternoon.
We attended our second DSACO New Parents meeting yesterday and we were enlightened to many interesting things about different doctors and thearapies and clinics. Going to the meeting was both good and bad for me...it was helpful becasue it made me realize that we can not become complacent with the care and services Will is receiving, even if it means fighting to get the care he needs, but it also made me freak out a bit about some things that may or may not be cause for freak out. The hardest part is that we are learning as we go, and no one can or will tell us what we need to do, so we have to make these decisions based on what we THINK is best for Will. We did meet a lot of really nice people at the meeting that will be great resources and support for us because they are travelling down the same road:)
Will has been entertaining Ron and I with all these fun, new things he is doing. Just in the last couple weeks he has rolled over from his belly to back several times, started grabbing the bottle with both hands, grabs for his feet and holds on for awhile, rediscovered his little thumb and is chomping away at it and has started showing a lot of interest in some of his toys. He is also doing very well with his new bottles and really likes the baby cereal!
These pictures are from St. Patrick's Day and Will's cousins, Ava and Jonas, are 'helping' Will see himself in the mirror! They love to 'help' with Baby Will:) Happy 4 Month birthday Baby Will!

Sunday, March 14, 2010

Mama Bear

We have connected with so many wonderful people near and far, new and old via the internet. Yesterday I was reminded that there are also a lot of evil people out there that use the internet to harm others. As I was happily starting my Saturday morning I stumbled upon an email from a group of parent-advocates that told of a very horrible group of people that are stealing images of individuals with Down Syndrome and creating captions for them that are very cruel and insensitive. This was not a good day for me:( I am somewhat nieve and it is hard for me to believe that there are really people out there that would think this is funny and not see how hurtful it can be to those who love these individuals.

Many times I still wonder, why was I chosen for this job. I am not sure I can be the fighter that Will deserves. I am just not a fighter, I never have been. I have always seen myself as the peacemaker. My mom says that this will bring the 'Mama Bear' out in me but I am just not so sure.

As a group we were advised to take down all our pictures on our blogs and to consider requiring people to sign in to access our page. I am just not going to do this. I was reminded by Ron that there are always going to be horrible people out there and we can't do much to change that (I really hate it when he is right when I am trying to freak out about something!), and we will just have to protect Will the best we can from insensitive, mean people. Will and his adorable, smiling face knows no different. Which is comforting, at least for now:)

Otherwise Will is doing great. He has starting grabbing for his toes and is looking like he wants to roll over. This week he has his big meeting with the Help Me Grow therapists, his vision screen and his 4-month well-baby check. So it will be an exciting week and hopefully a good one filled with good news. We have had a rough couple of weeks. Will was sick and on breathing treatments, Ron got carbon monoxide poisoning, our family dog Ellie died, the Deacon that baptized Will passed away, Uncle Ricky had surgery on his leg...so we really need some good news around here. Thankfully, Will, Ron and Ricky are all recovered and doing great!

One last thing...I hope everyone likes the new blog layout and has seen that I have posted some buttons on the one side that I hope you will check out. First, we are on the list for the Traveling Afghan and you will have to go to the website to read more about it. It is such a neat project! Second we missed the official day for the Spread the Word campaign, but please go to the site and pledge to help end the R-word. Third, all of you that are local and interested, there is a 5K run/walk on May 1 in Columbus to support Down Syndrome awareness. We will be walking/running and would love to have company:) There is another one in the fall that is nationwide so if you miss this one maybe we will catch you in September. Last, I have been following a blog written by a Mom that had a little girl in January with DS. She is an amazing writer and it has become so popular that CNN is doing a piece on her on Tuesday at 4:00 PM. If you haven't heard of her, she wrote an emotional, truthful and beautiful story of her daughter's birth. She too received the diagnosis at birth and in so many ways puts into words EXACTLY how I felt when Will was born but either couldn't express or was afraid to. Her blog is http://www.enjoyingthesmallthings.blogspot.com/ .