Well Hey There!

Talk about being busy for a little while!

Figure I'd give a small update on whats been going on around here for the past few months. I have been sorely lacking in keeping this blog updated. Seems I go in spurts, although I have been updating on Facebook more often than anything.  Look me up over there if you're interested.  I still lead a somewhat boring life in the FB world too! :)

So, Daniel is your typical 6 year old boy.  He is very opinionated and temperamental.  Has his good day and beware of the bad!  But for the most part, he is a happy go lucky kiddo.  He is rocking his AAC device -PRC ECO2 with ECOpoint.  We mix it up a little differently than most families I've heard of.  Some of the user area in his device has 15 cells, others have 60, and them sometimes 45.  It probably isn't recommended, but it seems to work for him.  Gives him practice getting the smaller cells, but he still can get his larger cells without the frustration.

 This has to be one of Daniel's new favorite pages.  Granted its not really working on his language stills, but boy does it give him the independence and freedom he loves.  This screen is programmed to change the channel and turn the TV on/off.  There is also a link from the "movie" cell which goes to a page with 60 cells for all of his movies.  Kid loves the power, and getting a reaction from changing channels on Dad when some sports stuff is on!  I taught him well ;)

Daniel recently had botox and an alcohol block.  We were very iffy on the procedure.  Not really the procedure itself, but they knocked him out to do it this time because of the block and also how many pokes he was getting.  For a brief moment, Daniel was a human pin cushion!  Thankfully he wasn't aware and didn't seem to have any soreness afterwards. He did milk it for most of the day and just crashed on the sofa, spitting out commands for me from his AAC!

Here is a super cute photo of Daniel playing with one of his many games he got for Christmas

And of course, he still loves to do crafty things...Here is the masterpiece of mixed colors of poster paint....we call it "Doo-doo doo with a little blue" off the paper!  See that evil look??  He thinks he's funny....not so much! ;)

Daniel also continues to be a very busy boy.  We are doing a mix of homeschooling with visits from the school district teacher.  We also have home bound services with Speech, PT, OT and adaptive gym class.  We still do his outside therapies also, so make daily trips for our outstanding Speech, OT & PT.  So to give you a quick shot of what we do weekly (does not include any doctor visits or those types of appointments)

Monday- home bound teacher, outside speech

Tuesday - home bound OT/PT (together), outside OT, outside PT

Wednesday - home bound speech & teacher (together), adaptive gym

Thursday - outside speech, outside OT, outside PT, adaptive gym

Friday - home bound teacher, home bound speech, outside speech, adaptive gym

And shoved in between all that we have homeschooling and other fun stuff (like home business I'm trying to launch)

So I'm sure you can see where we have been in the past few months!

Hope everyone out there is well and your children are flourishing and will continue in 2012.

Wonders Will Never Cease...

After over a year of fighting the AAC battle with insurance we have WON!  I can't say THANK YOU enough to our SLP, and the others who helped along the way!!

Can I hear a  Woot Woot?

If you haven't followed or if perhaps I didn't post about it (very likely lately) - we have been trying to get Daniel the EyePoint for his ECO AAC device.  The upgrade came out within a couple months of us getting his original ECO.  Immediately we started the process after seeing Daniel try it out when a rep came to speech one day (see video here).

Well of course the process is usually a few months, but then you have the cases lately with the economy and state cuts they try to make things even harder for you.  So we got "requests" for more documentation showing the Daniel was able to understand what was being asked of him, when his language skills were.  You can read more about that here.  We went through this "request for more documentation" multiple times, which of course gives the insurance company another 45+ days to "review" the new information, or "review" the data that was already in the report sent to them in the first place.  Just a big ol' pile of poop that they serve you to get you to hopefully give up and go away.  Well, they obviously didn't realize that we don't go away. So we keep giving them what they asked for and more.  We had letters from doctors, test results, videos, just about anything you could think of.  Then in October of last year we got the final "DENIED" letter.  

DENIED??  Are you kidding me?  So I wrote in for an appeal (first time I'd ever done one), which had to be done within 30 days of the denial date. My question is here is why do they get to take forever to do it but I only have 30 days?  Anyways, I sent in the paperwork and waited to hear some thing back.  In December I still hadn't heard anything so I called them.  Odd, they couldn't find any paperwork saying that we appealed. 

After a few not so kind words on my part, I immediately faxed to them the original request.  After a long time of getting the run around and repeated calls from me (almost weekly) to check the progress of our appeal, we were pulled to the top of the pile and a date was set.  That office had to be sick of me calling that is all I can think of, or that when I called I would say "Happy Monday!" and end with "Ok I'll talk to you later this week to see how things are going!"

So we had our date this past Monday.  Had to meet at our SLP's office which is normally 25 minutes away but of course we had a blizzard.  YEP a mini blizzard in mid April. Not a good sign.  Took us a little over an hour to get there.  The "mediator" read one letter that our neurologist had sent to them the Friday prior (which can I add was also in the original paperwork that was sent in over a year ago, just re-dated but had the same information in it), and the frickin' insurance lady says "We retract our denial, and approval the upgrade to his device"  

MONTHS AND MONTHS OF FIGHTING, FILLING OUT PAPERWORK, TESTING, STRESSING, SPEECH THERAPIST BUSTING HER ASS AND JUMPING THROUGH HOOPS TO GET WHAT SHE KNOWS DANIEL NEEDS, and you all of a sudden decide to retract?!?!?!

To say that we all sat there with a dumbfounded look on our face would be an understatement.  But oh well - the end result, we got what we wanted.  What I learned; they will keep requesting and denying and hoping that you will go away, just forget about it.  What I hope they learned - Don't mess with Pat (SLP) or Daniel's parents because we DON'T give up!

Now, if you'll excuse us - we are still doing our happy dancin'