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.

Tuesday, September 28, 2010

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:)

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