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!