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.



Monday, April 25, 2011

Happy Easter


We had a great Easter! 


Will and his cousins Ava and Jonas


Grandma and Grandpa with the 3 grandkids...very soon to be 4!  Baby Girl Brown will be here in just a couple weeks:)

I also wanted to share an email forward I had sent to me by Will's grandma.  It is a cute little tale of how God chooses moms of children with special needs.  It made me feel proud to think of it this way so I thought I would share it:)  Happy Easter!

Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew."
"Forrest, Marjorie; daughter; patron saint, Cecelia."
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped
child."
The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God.
"Could I give a handicapped child to a mother who does not know
laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wears off, she'll
handle it."
"I watched her today. She has that feeling of self and independance.
She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough
selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally,
she'll never survive. Yes, there is a woman I will bless with a child less than
perfect. She doesn't realize it yet, but she is to be envied. She will
never take for granted a `spoken word.' She will never consider a `step' ordinary.
When her child says `Momma' for the first time, she will be present at a
miracle and know it! When she describes a tree or a sunset to her blind child, she
will see it as few people ever see my creations."
"I will permit her to see clearly the things I see---ignorance, cruelty,
prejudice--- and allow her to rise above them. She will never be alone. I
will be at her side every minute of every day of her life because she is doing
my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
 God smiles.  "A mirror will suffice."

Friday, April 15, 2011

Spring!

So glad spring is here!  We enjoyed some time at the park this weekend and even sat down in the grass:)

Oh this tickles...

Maybe I'll touch it...


Oh look my shadow!

Will has been enjoying the swings at the park and a few chilly walks as well.  He is standing and cruising more each day.  He had Orthodic inserts put into his shoes last week so we will see if those help.  Most kiddos with Ds end up with some sort of Orthodic support.  The ones his PT wanted to try are the least invasive since they are just basically over-the-counter inserts for babies.  The hope is that it will just give him a little more support when he is standing and begins to walk.  His PT also put him on the treadmill last week!  It was really cute and funny:)  He looked like a little drunk sailor, but did a decent job keeping up with the treadmill.  He complained the entire time, but kept walking...similar to what I do on the treadmill!


Here he is jamming with his play table!  The PT still wants him to have some time without shoes to get input there as well.  He loves to stand and play at this little table! 

video


I also recently attended a workshop on Oral Motor Therapy by a company called Talk Tools that was given by the Oral Motor/Ds Feeding Therapy guru, Lori Overland.  The basic idea with OM Therapy is to use specific placement of food, utensils and tools in a theraputic way to promote skills used for proper feeding (and drinking in our case!) and for speech clarity.  Since children with Ds have low muscle tone, this program has been shown to help kiddos with feeding and speech problems and improve mouth posture by strengthening the oral motor muscles.  It is a very interesting, controversial and expensive approach.  Few speech therapists are trained in the specific techniques taught by the woman that developed the program so our limited options are to buy her expensive book/DVD, find 8 other families interested in having her come to Columbus to evaluate their child and also pay the very expensive fee associated with the eval or possibly finding someone more local (there is a ST in Indy that was trained by this woman) and have them evaluate Will and give us a therapy program.  It is thrilling to know that there is someone out there that may really be able to help Will with his 'drinking problem' and also improve his mouth posture and speech along the road, but EXTREMELY frustrating to not have access to the information!  So I find myself at a loss and also on a wild goose chase:(  Anyone that knows me well, knows how much I love a good chase!  For now I have written our local Down syndrome group to see if they would be willing to buy the book/DVD and let me borrow it for awhile:)

Look at that good mouth posture...Lori Overland would be so impressed!!!  Haha:)