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.
Follow us on this unexpected and exciting journey as we learn how to live life Will's Way.
Wednesday, October 20, 2010
Friday, October 15, 2010
Fall Fun
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:)
Happy Fall!
Sunday, October 3, 2010
Buddy Walk 2010
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:)
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:)
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:)
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:)
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:)
Thursday, September 9, 2010
Bump in the Road
Please keep us in your prayers next Thursday and always:)
Tuesday, September 7, 2010
Updates Galore!
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:)
Sunday, August 22, 2010
Thank You
Thank you to all of the wonderful people that have registered and donated to Team Will's Way. We are getting much closer to our goal of $1000 thanks to your support. I hope you all know what this means to our family. I can't not thank you enough for accepting and loving this little boy that we think the world of:)
Sunday, August 15, 2010
OSU PT Lab Experience
So the students played with Will, and with Sam, and then tried different exercises with him and discussed which direction they would take his therapy if he was their patient. It was interesting and fun and since I am trying to soak up as much information as possible I figured it couldn't hurt:) (Although it would have hurt if Meredith hadn't agreed to help me get the two boys down there with Ava and Jonas in tow...since I hurt my shoulder last week and OSU's campus is not exactly easy to navigate with a double stroller...thank God for sisters!)
I also think that the more exposure Will has to other people the better...but more importantly the more exposure other people have to Will, the more accepting they will be of him, and all people with Down syndrome and other disabilities:) It was a win, win!
Tuesday, August 10, 2010
Buddy Walk 2010
This walk benefits the Down Syndrome Association of Central Ohio and promotes awareness and acceptance of all individuals with Down Syndrome. It is a great chance to show your love, support and acceptance of Will and also to raise money for this organization that provides valuable programs and resources for our family and many others. DSACO has provided us with much needed support and resources for the last 8 months and we are so grateful to them.
We would be delighted if you could join us for the walk, but if you can't, we would also greatly appreciate any donation that you are able to give.
The 1-mile walk starts at 10am and there are fun activities for the kids after we walk. We hope to set up a tailgate before the walk, as is the tradition, and celebrate Will's life. Please go to http://www.columbusbuddywalk.org/ to register to walk with Will or to donate in Will's name, by choosing 'Team Will's Way' at the top of your registration or donation page.
Thank you for loving Will and for supporting our family:)
Thursday, August 5, 2010
Two Buddies
Will's Sweet Tooth
Monday, August 2, 2010
Elmo
In this video Will is playing with one of his pal's Elmo toy. At first he just stared at Elmo and then he looked at me like, 'what is this thing?'! After a few moments he got curious and started grabbing Elmo to find out more. Take note of how he startles when Elmo laughs...it is funny:)
Saturday, July 31, 2010
Will and Addison
All girlfriend jokes aside we had our Buddy Walk Kickoff event this past week and the keynote speaker was a young adult women with Down syndrome named Jennifer Cunningham. She is amazing! She has won all kinds of awards and honors for her involvement on the national level in DS organizations, she speaks at different events, she works, she lives idependently in her own condo, she drives, she was on her high school gymnastics team and she is engaged. Yes, she is engaged! She is so inspiring and gives all parents of individuals with DS so much hope for what our children can and will be. So although I am joking when I say Addison is his girlfriend...you never know:)
To read more about Jennifer Cunningham and other amazing self-advocates go to: http://www.ndsccenter.org/selfadvo/council.php
Also, more to come about the Buddy Walk soon...but mark your calendars...the Columbus Buddy Walk is Sunday, October 3!
Busy Boy!
Starting with last week, we had another Occupational Therapy session, our regular Physical Therapy session and a follow up appointment at the Audiology Clinic at Children's. The OT started out well but Will fell asleep in the therapist's arms by the end of the session. We mostly worked on different oral exercises to improve mouth posture and prevent tongue protusion, grasping Cheerios, holding a sippy cup and just general sitting in the highchair. All things parents of typical babes take for granted...we have to work extra hard on to achieve. He is really not all that interested in grabbing Cheerios or other small objects or in drinking from anything but the bottle so we have a lot of work ahead of us. I think we need to go see a Feeding Occupational Therapist if we don't make some strides soon, but we will see what Dr. Parsons thinks at Will's 9 month checkup this month. Will's PT went well and he is doing much better with sitting up and rotating to grab toys and with putting more and more weight on his arms. She gave us more new exercises to work on to get Will to play at his sides while sitting up and new ones to get more weight bearing through his arms. His audiology appointment was not as positive. He again has some hearing loss on his left side which can be anything from ear wax to fluid to damage to the eardrum. We will know more after we see the pediatric ENT in September.
Last weekend Will also had a playgroup with his pals that we have meet through our support group. We had so much fun sharing toys and talking about what all of the kiddies are doing developmentally and in each of their therapies. We are lucky to have met these wonderful friends that we have something so unique in common with:) Saturday night we had a party at Aunt Amelia's and it was fun to see good friends and family and share Will with them!
Thursday, July 22, 2010
The Gang
Friday, July 16, 2010
Will is 8 Months Old
Will is going to be 8 months old on Sunday and since it has been awhile since I updated on the new and exciting things Mr. Will is doing, here we go. His Physical Therapy has been going really well. Will's PT spends an hour with him every Friday and then gives us things to work on throughout the week. Several weeks ago he mastered rolling over both ways and does that regularly. He is still not quite sitting up alone...but he is sooo close! He will sit independently but still forgets that if he leans back too far he will tumble:) He is playing well with harder-to-pick up objects like spoons and sippy cups and has been using his hands to pass things back and forth really well lately. He is also very close to being able to pick up a yogurt snack (likes these better than cheerios so far!). He is babbling even more lately. He is saying 'baba' and 'dada' although there is no true connection yet:) On the occasion he lets out a 'mama' too!I have been told that usually around 6-8 months old is when you really have your 'ah-ha' moment. Thus far developmentally there has been very little difference between what Will is doing and what a typical child his age is doing. Around 6 months a typical child will take off and conquer many milestones very quickly. As we have been warned and been prepping ourselves for, Will's development will come, it will just be much slower. Since many of our friends are turning one and on the move, I have been trying to find the silver lining to all of this and this is what I have come up with so far...I will have more time to cuddle Will before he wants to always be put down...I have a few more months to get my house baby-proofed...I don't have to worry that Will is going to pick up stray crumbs and put them in his mouth yet...and I can still get pretty good pictures of him since he is not completely mobile yet!
We are practicing with the spoon and sipply cup in this picture. Will is such a big boy!
Friday, July 9, 2010
Loving Littles
Yet again Kelle Hampton put into amazing words what I am feeling and I didn't even know it. You must read her post from Tuesday 7.6...it is so good. She is so true and honest and so right when she says sometimes it just hits her that her daughter has Down Syndrome and that she doesn't always know when it is going to hit. That is the worst of it. If you knew, you could prepare yourself or at least make sure you are somewhere that you can cry freely, but when it hits you in JoAnn fabric for example...as it did hit me last night (Mere you know why!)...it sucks because you just have to brush it off and wait until you get home to let your gaurd down.I know she is right that moments like this hit 'in non-special needs land' too...'Parenthood is hard and beautiful. Scary and rewarding. Sad and happy.'...or so I am learning. It truely is ALL of those things. She put it best when she said 'Loving littles is one of the greatest, most wonderful things that will ever happen to you.'! So I will end on that happy note:)
(Kelle Hampton's blog is linked to Will's blog...it is called 'Enjoying the Small Things'.)
Tuesday, July 6, 2010
4th of July at the Lake
Here Will is lounging in his baby float trying to stay cool:)
Do I Have Something on My Face?
Wednesday, June 30, 2010
Picnic at the Park
Friday, June 25, 2010
Three Little Monkeys
Although Will doesn't have any siblings yet...his cousins are pretty much his brother and sister. They just love him and fight over who gets to be closer to 'Baby Will'. He thinks they are pretty neat too and during the few moments when Will is inconsolable, Ava and Jonas are always able to make him smile:) Finally, I got a picture where they are all looking at the camera...it was very much like getting three monkeys to sit still!
Sunday, June 20, 2010
Father's Day

We spent Ron's first Father's Day weekend in Cleveland and Wooster. On Saturday we headed to the Cleveland Zoo with Grandpa Ron and Grandma Susan and had a lot of fun. It was a bit hot and Grandpa and Will got a little tired toward the end, but we saw lots of cool animals and had fun walking around. On Saturday night we had dinner with Grandma Sandy, Grandpa Jim, Aunt Maggie, Aunt Kelly and Uncle Steve. Will had fun playing with everyone and showing them all how well he can roll over and sit up (with a little bit of help from mommy!). Will never has to look too far to find someone that loves him:)
Friday, June 18, 2010
Bouncin' Around
Thursday, June 17, 2010
Down Syndrome Clinic
We do see how the clinic needs some work. We were told 3 different appointment times and informed that we should arrive 15 minutes early, only to get there and find a dark office and no one there yet. Then, once we watched the staff walk in and finally got into the exam room, we waited and waited and waited some more. We were there for over 3 hours! Poor Will missed his nap, his breakfast and went through all the daipers in the diaper bag:( So we had to beg the nurse for one! We appreciate that there is such a clinic right here in Columbus that it will be a good resource for us and Will, but can see that it is under-staffed, under-funded and under-organized. We will continue to visit with Dr. Nash at this clinic on a yearly basis and hope it gains some speed, but we are also hoping to check out the Cincinatti Down Syndrome Clinic.
We finished off the day in the heat and sunshine at the Columbus Zoo. It was hot but a lot of fun:)
First Trip to Adams Lake


Will made his first trip to Adams Lake this past weekend. My family has a little cottage on this lake and we have spent weekends and vacations there for almost 30 years. It was fun to bring Will there for his first lake experience. He loved the water and although it was a bit cold and shocking at first, he was kicking his feet and loving it by the end of the day. Which is good therapy and also very entertaining!
Sunday, June 13, 2010
Saturday, June 5, 2010
Therapy
Will was evaluated by a Speech Therapist recently as well. She thought his mouth posture was good and was happy with all the verbalizations he is making. She gave me good advice on how to properly feed him with the spoon and gave me some recomendations for encouraging new sounds and expressions. She also made some recommendations on Infant Sign Language books and CDs and showed me some exercises to do with his mouth and facial muscles...which he already can work quite well since he is very expressive with his little face. Will has the biggest, brightest smile but also the saddest, most pathetic pouting lip you have every seen :) :(
This past weekend we had a family wedding in Fort Wayne so we got to see many of our family and friends that live in Indiana and we celebrated Will's Great Grandma's 90th Birthday with a big party. We love Grandma Brough and hope our lives are half as full as her's has been!
(In this picture Great Grandma Brough is holding Will and Great Grandma's OLDER sister, which is Will's Great, Great Aunt Mary, is in the middle and Papa Brough is on the end.)
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