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!

Wow, God is good!

Chearing on Conner at T-Ball w/ Uncle Tony and Aunt Angi

This week, Arizona Long-Term care came out to evaluate Madi (she does not qualify yet), and they asked if she had been in the hospital for 24 hours or longer this past year.  For the first time ever, I got to say NO!  It felt so wonderful.  I still remember feeling so scared when we kept having to go back, wondering what all the surgeries would do to her tiny, developing brain, wondering how her brother, only two at the time, was doing at home without me, and not ever knowing when we will be going back.  Though Madi's surgery journey is far from over, it feels so good to have been out of the hospital for so long.  They say once you have a shunt that works without failing for two years, you are good to go.  We are now over half way there!  I am very thankful that God has been so very good to us.  He takes care of us, always. 

Psalm 45: 1-7

God is our refuge and strength, an ever-present help in trouble.

Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea,

though its waters roar and foam and the mountains quake with their surging.

Selah
There is a river whose streams make glad the city of God, the holy place where the Most High dwells.

God is within her, she will not fall; God will help her at break of day.
Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts.

The LORD Almighty is with us; the God of Jacob is our fortress.

Selah

YEAH!! I am SO relieved!

 I talked to Dr. Moss's office today and Dr. Moss has changed where he sees his patience, however, he still has rights at Phoenix Children's Hospital. So basically, we can see him for our regular appointments in his new office, but still request him in case of an emergency at PCH. YEAH!! I am so happy! All that worrying for nothing. I know it's all in God's hands, and worrying does nothing, but I still give it a go from time to time ;).

Not so fond of the birds at the Ostrich farm

I am so hearbroken over this

Dr. Moss, Madi's neurosurgeon, is apparently no longer at Phoenix Children's Hospital. On Friday, I got a letter saying that as of March 10th (and the letter came mid April), Dr. Moss was no longer in the practice. My mind is swarming with questions... Where did he go? Why did he leave? Was it voluntary? If he knew it was coming, why did he not tell us at our last appointment? Is he at a new practice? The two most important things for Madi, I feel, are her physical therapist and her neurosurgeon. Of course, her neurologist, urologist, orthopedic surgeon, and other caregivers are extremely important, but the neurosurgeon does all the big, tough, scary operations. Dr. Moss has been there for us from the beginning. He fought for us to have a vaginal birth, to breastfeed right after her surgery, to wear her in a (good supportive, not Bjorn-ish) baby carrier, and so much more!  He has been AMAZING!!  What will we do?!?!?

* UPDATE BELOW ;)

I do have some good news to share.  Madi's very awesome great-Aunt is sending her some money for an Amtryke.  When we add that to her Amazon.com associates account money, as well as the money from her Human Tribe Project necklaces ... ... we have enough to purchase her an Amtryke!!!!!  WOOOO HOOOOO!!!  I think this is such a big important step for both her physical and emotional well-being.  I am going to have Tami, her physical therapist, help me order it on Tuesday.  I cannot even tell you how excited I am!  Thank you to everyone who purchases through her link. I know it seems like such a small thing, but it is HUGE!!!!  THANK YOU!

 

Update... Turns out that due to some politics, Dr. Moss chose to leave Phoenix Children's Hospital and is now at Cardigan Children's hospital, where we now see him.  Turns out we didn't lose him after all!!

Sometimes no news is good news!

Things have been pretty quiet around the Veprek household, other than the business of trying to move in with our normal doctor's appointments, therapies, and well, life! We still have MANY boxes to unpack but we are slowly getting there. Madi seems to be doing very well. Her fontenelle feels good, her shunt and shunt tubing feels good, her urine has been nice and clear when we cath her, and she is doing great in her stander. We have a few appointments next week, but they are just routine things. We also found some errors in a medical bill for $1,200 that brought it down to about $590, so hey, that's always great! We submitted Madi's paperwork in for an Amtryke (hand-cycled tricycle) and we cannot wait to get that. Walks are difficult because Madi wants to be on her brother's tricycle, and just is not happy in her push car, stroller, or even in mom's arms. She is ready to go, go go! In May, Madi and I head to Shriner's of Las Angeles to get her evaluated there. We will be flying over and staying at the Ronald McDonald house. It will just be her and I, and I have to bring her car seat, so that should be interesting, but we'll make it work. All in all, things are going great!

A Whole New World

As you can imagine, standing is amazing for Madi, physically. It helps her bladder and bowels work correctly, it helps her circulation, it helps her muscles and bones, but it also helps something else, equally as important. It helps her socialization and self-esteem. Madi wants so badly to do what other children her age are doing, and it's hard sometimes to make that happen, though we do absolutely anything we can. Since Madi has gotten her stander, a whole new world has opened up for her. She loves getting in to cupboards, playing with her friends, and helping mommy. She isn't moving around in her stander yet, but we're working on that. For now, I just play with her and move her around wherever she wants to go. She is such a curious little girl and loves getting in to things. She takes things apart, puts them back together, bangs them together, and has a wonderful time. I love watching her play! She's also growing very quickly now that she is upright more. I already brought her stander back for one adjustment, and it just about needs another! Wow! Our next step is to teach Madi how to move around in her stander (see photo below) so we are working on that. I'm just so excited that she loves it so much! I have a picture of her playing 't-ball' in it too, I'll have to find it. One of her favorite things to do in it is golf... we may have a future professional golfer on our hands!