zaavan co. and beepBo

Wednesday, March 07, 2007

without further adieu

what a long strange trip it's been. so much goes on and there's no way to catch you up on all of it right away.

zaavan continues seizure free and we are now in the process of tapering him off his last anti-seizure medication. as a result, he continues to be more alert and interactive with the world around him.

he is still learning how to communicate with us by using 'eye-gaze' and turning his head from one side to the other to indicate 'yes' or 'no'. he is continuing to be more 'vocal' all the time, although he still does not use words. he is still using a head switch with a 'dynavox' to speak for him and make choices, and continues to make progress in this vein.

we do have a major fight on our hands right now with the state goverment over a program that they hyped up to us to help provide funds for zaavan and theraputic equipment and accessibility equipment. but, since we have been approved, it has been nothing but a huge misleading headache. basically, the message is, "funds are available for use! but whatever you want to use them for will not be approved!" in fact, it is as a result of this program and the workers associated with it that we have doubled our debt in the past year. the message was, "get a van, we'll put a lift in it." over and over they gave us that message. we got a van. they then told us they wouldn't put a lift in it. but far too late for us to return it within the 48 hour window we had. and in order to get it we had to consolidate the van into an already existing loan and now the 'negative equity' in the van is so great, we can't sell it back. just one example of the types of headaches we are having with the program right now. the story is much deeper, but i don't have enough knowledge to wax eloquent. we'll have to wait for erin to do that.

and last, but not least, here are some pictures.







5 Comments:

  • At 7:33 PM, Anonymous Anonymous said…

    Zaavan is so cute!!! Thanks for the updated pictures. (although I think he is going to give you a hard time some day about including the picture with his poop all over everywhere! :0)

    Sorry to hear the fund has reneged on giving you the lift in the van. I know when I saw you at Christmas you were so looking forward to that, and it would have been such a help. AAAAggghhhh!

    Zaavan and you and Erin are in my prayers often. I love you all.

    Leah

     
  • At 12:14 PM, Anonymous Anonymous said…

    seriously Jon, Zaavean will murder you later in life. Not for money, but for pure spite. Or, he'll sit a top a clock tower and pick people off one by one screaming about how his father put a picture of him with a literal exposion on the internet and ruined his life. It will come back to haunt you.

    Ben

     
  • At 10:42 PM, Anonymous Wendy ftfs said…

    I truly think that Jon wishes with all his heart that Zaavan will give him a hard time about that pic some day ...

    He's adorable ... poopy pants and all.

     
  • At 3:44 AM, Blogger jON said…

    i'm sorry, but i had to have witnesses. the first thing i thought besides, 'where the fuck do i even begin?' was that i needed to capture this on film because no one will ever believe how massive this thing is. not to mention the fact that you can't see the other side of his back to see it going all the way up to his shoulder blades! it was everywhere!!!!!!

    but not quite as bad as the one diaper he had on the way home from des moines when he was still an infant. the shit was in his armpits. a truckstop men's room changing table and thirty seven wipes. enough said.

     
  • At 12:10 PM, Blogger Tyler Dawn said…

    Oh my goodness, that looks just like Andy's diapers (sometimes we have to give him potassium citrate, because of the spina bifida, his intestines don't do a very good job and getting things through). Nothing like carrying a dripping 50 lb child to let you know that carpets and special needs kids aren't a good combination.

     

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