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.

Saturday, July 31, 2010

Will and Addison

I also have to post this picture of Will with his girlfriend, Addison. Isn't Addison just the sweetest:) Her and Will played together at playgroup and had fun flirting.
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!

Will has been a very busy boy and we have a lot to update everyone on! Since I last blogged, Will has been sitting up independently and rolling himself all around the room. He has been to several appointments and a couple of fun parties. Will's calendar is probably busier than most adults:)
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

This is the gang that I watch and explains why I am crazy:)
(Tyler 1, Ava 3, Will 8Months and Jonas 2)

Playing in the Sandbox

Will loves the sandbox at Aunt Mere's house! Today he sat up for a long time and just played in it with the 'big kids'. Some went in his eyes and some went in his mouth but mostly he just loved the feeling of it between his fingers and toes:)

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

Will had an exciting first 4th of July. Although he slept right through all the fireworks, many of which were exploding right outside the window of the cottage where he was sleeping, he did really enjoy splashing and playing in the lake all weekend. He loved kicking his feet and splashing his hands in the water, which was really theraputic and really cute. It is really hard for me to not see every moment as an opportunity for therapy, but this type of therapy he did not seem to mind and it let me off the hook for the weekend:) He did have some fussy moments since he came down with a bout of Thrush and had to take an antifungal medicine all weekend, but he was a happy guy most of the time. Thrush is an infection in the mouth that infants and older adults get that causes uncomfortable white patches on the tongue and cheeks. I am told it is very common and I am happy that it is already clearing up. He is a little reluctant to eat, although he is always reluctant to eat his veggies, and is holding his tougue out more because I think it feels funny, but most of the patches are gone and he is eating his bottle much better today.
Here Will is lounging in his baby float trying to stay cool:)

Do I Have Something on My Face?

Will discovered grass for the first time this weekend as well. He was grabbing and pulling it and managed to get a lot in his mouth. This may, or may not be why he has Thrush. (That is a joke, you don't get Thrush that way!) It was pretty funny!