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.

Sunday, January 27, 2013

Will's iPad

Will recieved a very generous gift.  He was the recipient of a grant from a local foundation that paid for an iPad for Will.  Complete with case.  We are humbled.
Here is Jim from the MJB Foundation presenting Will with his iPad.  What an amazing foundation and a giving person.  To read more about the foundation go to www.mjbfoundation.org .

So far Will has been doing well with the iPad.  We have several apps that are the same ones used by his speech pathologist at school (pictured here holding Lillian).  Those are great for consistency.  We also have several that we have found or were recommended to us by friends for both speech therapy and occupational therapy.  We also have some fun ones too!  We had to 'hide' the Elmo one, because although it is good for learning letters and good for finger isolation, he only wants to play that!  Each night we try to take a half of an hour to sit and work on it.  Then throughout the day we play and little here and there. He has been doing well with making new sounds and words with several of the speech apps. I have a good video of him saying 'boy', but Blogger is having issues with uploading videos.  I will try again later.

Good news health wise...Will has been eating better and is back up to 29lbs.  He has also been drinking Pediasure juice which is packed with nutrients and calories so I think that is helping too.  It tastes aweful, but he doesn't seem to mind:)  Ironic right! 
Which leads me to a whole big fat weighted and heavily debated topic in the Ds world.  Since I think mostly family and friends check in on Will thru this blog and not others in the Ds community, I thought I would give a brief description of what some call vitamin therapy, nutritional intervention or 'the protocol'.  There are several drugs and supplements that many parents are giving their littles with Ds to improve or prevent what they feel are the issues with cognition, which are mostly memory, focus and the onset of Alzheimer's symptoms.  It involves drugs like Prozac, Focalin (ADHD drug), Gingko, B vitamins and others.  It is an interesting debate and one that has divided many in the community.  The believers feel pretty strongly that their kiddos are doing better on them and the doubters don't feel their is enough science based evidence to support the risk associated with putting a small child on drugs that weren't made for them.  It is important to say that I have discussed this topic with ALL of Will's docs and the resounding response is 'no'.  Most professionals feel there is not enough evidence to support the benefits and more importantly there are not enough tests to take the risk.  Clearly there are some docs out their that support the protocol, because these parents are getting their scripts written by someone, but I think they are the few.  Will is not on anything other than a typical multivitamin and some DHA for good measure.  I trust Will's doctors and hope I am doing the best for Will always.  I could go on and on about the debate but I will stop here.  I mostly mentioned it because I think it is an interesting debate and one that I have spent hours researching. 

Otherwise Will has been having several good days at school.  The teachers have said that he has been more social and participating more.  He had some bad days while he was sick and didn't want to do much:(  We have been speech therapist shopping again.  I am shaking my head as I write this.  Hopefully we find a better fit soon.  In the mean time I am reading 'It Takes Two to Talk' which is a program developed by the Hanen organization.  It is a program for preschool aged children with speech delays, but is really geared more at the parents and how we communicate with our children.  Basically it teaches you ways to talk to and react to your child's behaviors and attempts at communication.  I have heard a lot of the principles before from various therapists and teachers, but reading the book will hlep to reinforce and remind me of those.
Will has also been taking a gym class each week for the winter.  He started out scared and overwhelmed the first class, but the last two classes have been great.  He is excited and willing to participate!  I am an active participant as well (unfortunately) so I have no pictures.  I will work on that:)

Will's new favorite treat...popcorn!  I have been making it on the stove a lot lately and he can't get enough!  Just like Papa used to make us for IU games:)

Tuesday, January 1, 2013

Welcome 2013!

Happy New Year to all!  We finished off 2012 with lots of celebration and some struggles, but are happy to invite 2013 and all it will bring!  We had a nice Christmas despite all being sick.  We have enjoyed some time off together, some of which were sick days from work and school.  We rang in the new year all comfy at home.
2012 brought us our first new house and all the fun and firsts that go along with that.  We saw lots of new firsts with Will too.  We had some fun family times and a couple of exciting trips too.  We hope 2013 is filled with as many good times and firsts to celebrate!
Recently my sister and I have been talking about the 'shiny' pictures.  How Christmas cards and social media make you feel like everyone else has it so easy and perfect, even though we all know better.  And whether we know better or not, we compare our family’s imperfect insides to other families’ shiny outsides.  Here's my shiny picture.  Even though they aren't all my kids, they each make my life shiny and happy.  My life is far from perfect, but most days these kids make it feel that way.
Will has been challenging me more and more with things he won't do and won't try.  His stubborness can be exhausting.  He continues to refuse food and, yes, I have tried EVERYTHING.  He gets grumpy and frustrated when I try to work with him on shapes, colors, letters.  He can not express himself other than to say 'no', so I hear it constantly.  Sometimes its cute...mostly it is frustrating.  In my positive column though, he did finally have fun with the shaving cream in the tub.  Its a small step, but I need to focus on the positive:)  He didn't touch it much, but he used his shovel to move it around.  So although it didn't do much for sensory work, he did get a wrist work out and fine motor skill practice.
And we were sick about two weeks before Christmas.  All of us.  High fevers, sore throats, congestion and coughing like we have never coughed before.  I had pneumonia amid other issues and it took us all about until Christmas to feel better.  Poor Will was miserable.  Kiddos with Ds get the upper respiratory stuff pretty bad when they get sick because all their anatomy is small, including airways.  He has lost 3 pounds in the past month either from being sick or being stubborn.  He slept a lot and layed around for a week, but managed to stay mostly happy.  This is one day during our quarantine.

We did make it to Wildlights at the zoo!

Helping decorate cookies at Grandma Sandy's house!

Wrestling with his cousins at Crandall Christmas:)

Christmas eve at Gaga and Papa's house.  Good food and good company!

Uncle Ricky got me solo cups for Christmas (among other things).  I like them a lot but they aren't much fun without Uncle Ricky here to build the tower.

Christmas round two at Grandma Sandy and Grandpa Jim's house.  Lots of presents!

When we finally made it home, Santa had stopped by our house too!  He left Will a chair, jeep, microphone, books and puzzles.  Elmo wins the top prize thanks to Aunt Kelly!  He also loves his car garage from the Browns and has already spent hours making the cars go up and down.  He is thankful for ALL his presents and got spoiled a little bit:)

So we have high hopes for 2013 and hope we are not disappointed.  We wish all our family and friends the same good things.