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:)


GAGA Judie said...

Really cute pics of my little munchkin Will.So funny about the popcorn.I guess some traditions really do need to be passed down.I am so excited for Will with his IPAD every time I think about it.It's so refreshing to know there are people out there that just want to help others without strings attached.luv gaga

unc ricky said...

love the pics on this post, esp the one in his jammers... sounds like 2013 is the year of my homeboy william

by the by, "Will is not on anything other than a typical multivitamin and some DHA for good measure." this is what Lance Armstrong said before he came clean for doping... glad my william's docs fall into the "no" camp on that issue.

papa said...

i'm pretty sure there is a study that shows butter on your popcorn is directly proportional to ease of finger swipes on your i pad when done at the same time love
seeing that smiling face great pics papa

Emily said...

Love Will's pjs and that smile!

Anonymous said...

These are just the cutest pictures yet! Everytime I think that kid can't get any cuter he proves me wrong. He looks so happy!! Hmm I love popcorn.lol..I so apprecite your posts.Sometimes it's just so great to be able to check in on you guys.Love you!
Aunt Cindy

unc ricky said...

papa - can you cite your source on that research? does it rhyme with borville bedenbacher? or did it rhyme with bick bonkers?