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, September 28, 2010

Donation

I just found out that a very good friend had a fundraiser at work today to benefit DSACO and it raised $200 for the organization!  So although it went straight to DSACO, it was really a donation to Will's Way:)  We are so grateful to all our wonderful friends.  Thank you:)

Tubes and Trusts

Well I may have spoke too soon about Will's tubes and how he is handling them.  He was great initially and back to himself almost immediately, but the last several days he has not been so happy:(  He has just been more fussy than normal and not eating all that well and Will is not normally an unhappy guy!  So I am not sure what to think, but I will have to follow up with the ENT sooner rather than later and hope it is nothing serious.  I am really hoping it is just a tooth.  Like all else, teeth are delayed in babies with Down syndrome.  Will has no teeth right now and we may not see one for several more months, but we keep checking and hoping for one soon. 
We had a DSACO meeting last night and there was a financial planner there that specializes in planning for individuals with special needs.  So it was a lot to take in...wills, life insurance, special needs trusts...and how all of this can affect Will's eligability with government aid and how we need to plan for his future.  So if any of you were planning on giving Will your life savings...hold off for now:)  We need to set up a special needs trust instead of a regular savings account or college savings account and this is going to be a major undertaking for us because it must involve a lawyer that deals with special needs estate planning.  So like all necessary evils in life, it is going to be complicated and expensive just to set it up.  One more thing to worry about:(
On a more positive note, we are very excited about the Buddy Walk this weekend!  We are making all the plans for our tailgate and going to pick up our Will's Way T-shirts today.  We were talking to all of our friends last night about setting up our tents together and getting a group picture.  I think it will be an emotion-filled, inspiring, uplifting and all around wonderful day!  Thanks again to all that have supported Will's Team for the walk.  It is going to be a great event!!!
Will's newest thing is that he wants to patty cake with you...so he and daddy are clapping in this picture:)

Sunday, September 19, 2010

Applesauce!

Will is doing very well since his surgery on Thursday.  He was back to his happy self by Friday.  On Saturday daddy went and ran a marathon in Michigan but Will and mommy stayed in town and went to our monthly playgroup and played with our friends!  Today we went apple picking in Pataskala and got apples, cider and kettle corn...yum!  We are going to make lots of applesauce:)

Thursday, September 16, 2010

Is My Butt Showing?

Will's ear tube surgery went very well today.  It was a long day but one we were ready to take on.  We got to Children's Hospital bright and early (actually it was still dark!) with a very hungry and very confused little boy.  We were in the surgery prep room for almost two hours while many different doctors came in and asked all the same questions and took all the same vitals and all told us how cute our boy was:)  Ron and I passed him back and forth and took him to the toy room to keep him occupied and keep his mind off of that bottle in between doctors.  So they finally took him back around 7:45 and the doctor came out to find us and Gaga Judie in the waiting room around 8:15 to tell us all had gone well.  He was extremely grumpy, confused, hungry and down right mad when we got back to the recovery room.  Once the pain medication kicked in and he calmed down, they gave us our instructions and off we went.  He came home and ate a bottle and took a nap and by this afternoon was his normal smiley self:)  The only major side effect so far is that he has been doing raspberries (making sounds with his tongue and lips) all afternoon.  So I think either his ears itch or feel funny or we all sound just a little bit loud and strange.  It is actually pretty funny!  We will follow up with Dr. Elmaraghy in his clinic in a month and probably have to stay out of non-chlorinated water but otherwise the tubes shouldn't affect our everyday lives.  So we are tired from our long day but happy that we made it past another hurdle and can put this day behind us! 
How cute are these little surgery gowns!  Uncle Ricky texted me during surgery to remind me to make sure William's butt wasn't showing:)

Sunday, September 12, 2010

Clap Your Hands

I finally got a good video of Will showing off his clapping skills:) He also sneaks in a 'so big' in the beginning! Enjoy:)

Also, DSACO extended the deadline for the Buddy Walk Registration until next Sunday, September 19, 2010. So if you haven't registered or donated yet and would still like to, go to http://www.columbusbuddywalk.org/ and find team 'Will's Way' in the box on the right side to do so. Thank you again to all that have given to Will's team. Your love and support carries us:)

video

Thursday, September 9, 2010

Bump in the Road

We did not get great news at the ENT Clinic:( Will is going to have ear tubes put in next Thursday 9.16.10. Although I know this is just a minor bump in the road...it is still a bump. A very unwanted bump! It is a simple and routine surgery, but it is surgery, and he is only 9 months old. It is the anesthesia that bothers me the most, but after holding him down screaming for 15 minutes while the ENT doctor examined and scraped at his ears, I am thankful that he won't feel any pain during the surgery. Will is going to be in good hands. The doctor said it will be quick and easy and he will be mostly recovered by the next day. It seems Will is fairly young to be getting tubes already but the doctor felt he needed to be aggressive since Will doesn't need any more obstacles in the way of his development, especially in regard to speech and hearing. I agree.

Please keep us in your prayers next Thursday and always:)



Tuesday, September 7, 2010

Updates Galore!

Will has been a very busy boy lately and has lots of new things to share! Since I wrote last Will has had many appointments, therapies and lots of new accomplishments.
Will stopped by to see his favorite Doc for his 9-month well baby check and he weighed 19 pounds and is up to 28 inches long. All was well, so he had his immunizations and we bothered Dr. Parsons with more silly questions and off we went! She seemed happy with all his progress and reminded me yet again that Will is more alike than different from a typical 9-month old baby boy....which also reminded me that this is why we love Dr. Parsons!
We have a Physical Therapy student from OSU that is going to be hanging out with our family for the next several months and she joined us for this appointment. She is working on her Early Intervention certificate and part of that is spending time with a family like ours to see how Will's diagnosis affects our daily lives. So we are happy to share Will and our life with Susie so that she can learn more about the crazy life we live with all our doctor appointments, outpatient therapies, daily home therapies, meetings, social events and everyday life with a baby with Down syndrome. Although Susie does know a bit about all of this, she will be reminded of how crazy it can be after spending the semester with us!
We were accepted into the Franklin County Home Services Program a couple of weeks ago and had our first meeting with Will's Early Intervention Teacher and his home-based Physical Therapist. The program is through the Franklin County Board of Developmental Disabilities and provides children with developmental delays like Will with the necessary services and therapies in our home on a regular basis. We have been waiting for 9+ months to get these services started so we were very happy to get going! In general there will be an Early Intervention Teacher, an OT, a PT and a Speech Therapist come to the house monthly to work with Will. We really liked the teacher and are excited to go down this newest path!
We have an appointment with the pediatric ENT at Children's Hospital tomorrow to look closer at his left ear which he again did not pass the hearing test on. We both are not looking forward to it! It may mean a bit of pain for both Will and mommy:(
We also went to a Columbus Clippers game with our DSACO friends, a wedding reception in Indiana, saw Ava off to her first day of preschool, had a DS playgroup at the splash pad at Bunny Park and spent Labor Day at Adams Lake with Gaga, Papa and Uncle Ricky. Will has started clapping and putting up his hands for 'So Big' and has waved a couple times (it may be a mistake but we will take it!)! He continues to get even better at sitting and reaching for toys and is increasingly vocal with 'dada' and 'baba'. Still not 'mama' yet but it will be that much more special when it comes:) He is starting to play more with his toys and will sit and play independently for long periods of time. He is still not loving his veggies...even the homemade ones with LOTS of butter...but has been enjoying Cheeries, chunks of different table foods, most pureed fruits and even some scrambled eggs.
Last but certainly not least...we hit our goal of $1000 for the Buddy Walk! We are so very grateful for and inspired by all of your support for Will and this wonderful organization! Thank You!!! So if you are still planning on walking with us and have not yet signed up, you need to sign up by this Sunday 9.12, if you want your personalized Will's Way shirt. We are getting very excited for the walk and are planning a tailgate for all those that can join us. I know many of you will be there in spirit and we will be thinking of you as we walk:)