It's almost midnight...

... and everyone has been asleep for hours.  I HAD to stay up, though, and build Madi's Amtryke tonight.  I just could not wait another day.  I am so exicted, it's like Christmas for me :).  Be on the lookout for some action pictures.  Here comes Madi!!  I am so excited!

And for your viewing pleasure, a few photos from the zoo today:

Three little words...

Yesterday, Madi said the most amazing three little words to me... "I love you".  I had just told her "Madi, I love you" and she looked at me, patted me on the back, and said "I love you".  It was the first time she had ever put three words together like that, and even though she was just repeating me, I could not help but feel proud!  She still signs most of her words and does occasionally put two words or signs together, but this was a first.   Go Madi!!

In other news, it seems Madi made it in to long term care, which is just totally because of God.  They told us she was too far off and would not make it in, yet, she did!  I do not know the extent that they help with medical bills, but I know they do help.   The biggest part of AZLTC that I am most excited about is that if budgets get cut again, they will not be able to cut Madi's therapy.  Every time budgets have been cut, the kids who do NOT have AZLTC are those affected.  By getting Madi on long-term care, she is protected from the cuts.  Yeah!!

While I have your attention, please go vote for 100 children to get Amtryke tricycles at http://www.refresheverything.com/amtrykesforchildren.  It would be so amazing for 100 kids to get their wish!

Thought I'd share my video

I made a little video to try and win a new Beco carrier and thought I'd share.  I don't know if it will win me the carrier or not, but hey, it's worth a try!  As you all know, I am a baby carrier fanatic.  I found them to be very useful when Conner had really bad reflux, and use them all the time with Madi.  The Beco is my favorite brand to use because it evenly distributes the weight of carrying around your child and has nicely padded shoulder straps so that it is also very comfortable.  I use mine in the grocery store, on walks, when I'm working around the house, so that Madi can nap when we are out and about, and lots of other ways too.  I plan to use them even longer with Madi, so that I can carry her everywhere we go and she is never limited.  I want her to be able to go hiking with us and other places a wheelchair or a walker and leg braces can't take her.  It's nothing amazing, but someone out there may like it or find it useful.  Enjoy!

http://www.youtube.com/watch?v=2clOMnIKHEs

So THAT'S where our money has gone....

I try to post about what it costs to raise a child with special needs every once and awhile.  I do not do this to get sympathy, but to raise awareness.  I really do not think people understand how much it costs.  As we speak, our state is in a healthcare crisis.  Budgets are getting cut left and right.  Now they are looking to cut KidsCare and have already made huge cuts to the services offered through the Department of Developmental Disabilities.  Did you know (taken from an e-mail put out by Raising Arizona Special Kids)...

Since December 1st, state budget cuts caused 4,091 children with serious health conditions to be dropped from Children's Rehabilitative Services (CRS).
For most, this was their primary healthcare insurance.


Children with CRS conditions are generally not covered under most private health insurance plans.
Only 234 have qualified for the AHCCCS program.


If KidsCare coverage ends, another 900 children with special health conditions will be dropped from CRS.


This is their only healthcare insurance.


We do not qualify for AHCCCS, which also booted us out of CRS, so I feel for these families.  So far this year, we have spent $1538.04 on our private health insurance and $2840.09 on other medical expenses, for a grand total of $4,378.13.  This is actually a low number, since I know I paid cash for a few appointments (at least $200 worth) and wrote checks for quite a few before switching to credit card, and it does not include Madi's Amtryke, since we are using a generous donation from her great-Aunt and her Amazon.com associates money for that.  I know there are MANY families out there who have it worse off than we do.  I am very thankful we are able to pay her bills, even if it means we live a bit differently, and that we have insurance.  We are also very lucky that we have not had any big hospital stays this year, like we did last, that would have increased this number exponentially.  I would spend a million times that on her, because she is worth every penny.  My point, though, is this....  If you ever get a chance to have your voice heard, please stand up for our children.

"Any society, any nation, is judged on the basis of how it treats its weakest members ; the last, the least, the littlest."  Cardinal Roger Mahony

Would anyone like to see.....

How many insurance claims we have had so far on Madi since her birth?  Let's just say, our insurance company probably doesn't love us too much (we have private insurance we pay for ourselves).  Yes, this stack is JUST Madi, and some claims have multiple dates/claims on one page, or it would be bigger.  Thank God we have insurance, huh?!?!?

And, just because it's cute (even though it's not related), here is a picture of Madi in her very first pigtails :)

Guess what is on the way to our house???

WOOOOO HOOOOO!!!!  Madi's Amtryke is officially ordered!  Thank you everyone who made it possible.  I couldn't be more excited for her!  I know that she is going to love it.  Watch out world, here comes Madi!

Thank You Hope Kids, Next Coffee and the Arizona Cardinals

Today we went to a Hope Kids event at Next Coffee for an event with the Phoenix Cardinals.  Big Red and # 89, Ben Patric, entertained the kids and read them books.  They also gave them shirts, signed kid's footballs, and cardinals backpacks.  Next Coffee provided milk and cookies for the kids (of course one book they read was If You Give a Mouse a Cookie... one of my favorites!!) too.  It was so much fun!  Thanks to everyone who put the event on for our kiddos!  If anyone needs a WONDERFUL organization to donate to, Hope Kids is it!