Wow, that was fast!

First a few pictures, of course :)

4th of July

Conner is so sweet with his 'sissy'

Madi loves her papa!

Daddy's Girl

Grammy is very special to Madi too!

Conner and Madi were in David's brother's wedding

Momma is so proud of her little girl!

Madi loves Uma and Umpa too!

Madi and her granddad

I talked to Ron Whiteside from Hanger, who makes Madi's AFO's and her parapodium, and he said he officially cannot make her parapodium any taller.  He thinks she has about 3 months left of wear, and then she will be too big for it!  Dr. Segal was going to write a prescription for Madi's HKFO's when she turns two, but I'm going to call and see if we can go ahead and bump that up.  She is mentally ready to walk, and wants to be "up" so badly.  She tries so very hard, too, but cannot get her body to do what she wants it to.  I feel that she is ready, and hope he agrees!  It feels like we JUST got her stander, though I suppose it was only back in February.  We are still waiting on her wheelchair and hope to have that soon.  I have been getting Madi prepared telling her how much fun she's going to have going "zoom zoom".  We even read the book Zoom by Robert Munch., which both she and Conner thought was hilarious!  When I met Robert Munch at a teaching convention the school I worked at sent me to, I had him dedicate the book to my students.  Who knew I would be getting someone so wonderful he could have dedicated it to!  I think I may write him, explain the situation, and ask if he can sign another copy for me. 

Go Madi Go!

I just had to share my amazing little girl with you!  Here is a video of Madi riding her NEW Amtryke.  She LOVES it!  When I showed it to her and told her it was hers, she got very excited and shouted, "Mine, mine, mine!".  It was really cute.  As you can see in the video below, Madi petals the handlebars with her hands to propell the tricycle.  I can also push to help her.  She cannot push with her legs, but we got her one where her legs move also when she petals with her hands.  She has a leg strap to help keep her knees/legs in, and the foot petals have straps to hold her feet in.  The movement of her legs helps with her bone development, circulation, and all of that good stuff, even though she's not 'pushing'.  She still needs some help to make herself go, but she is learning very quickly.  She is doing so awesome!

 

And speaking of how Madi gets around, here she is in her stander/parapodium with her walker.  We are teaching her to use her walker to get around.  Eventually she will get RGO's (reciprocating gate orthotic- pardon my spelling on that) to "walk" but this is getting her ready.  

P.S.  Sorry for the crummy videos. I can't find my camera and had to use my dumb camera phone.

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!

What a wonderful day!

We started the day with letting Madi be "up" and playing.  She LOVED standing up with her brother and had so much fun!  Next I put her in our Little Partners Learning Tower, which I got the kids last year for Christmas.  I bought it for both kids, but was really hoping that we would be able to use it with Madi so she could be at counter-height and help mommy cook.  It works PERFECT and I couldn't be more excited!  Madi and Conner helped me make oatmeal cookies today.  Here are a bunch of adorable pictures for your viewing pleasure.

(Yes, that is a breastpump part.  The kids think it's the best toy ever)

A good view of how the stander works to hold her up

Playing with a cool toy

Cute shoes

Playing by mommy

So excited about cookies!

YUM!

And for our last good news of the night.... we got the house we wanted!  We found out at 8:30pm and I was so excited I actually teared up, which I NEVER do!  It takes a lot to make my cry!  I cannot wait to have our own home again.  Put March 26th on your calendars.  I'm sure we'll be hitting you up to help us move ;).  We have been really praying that if God wanted us in this house, everything would work out and they would not come back asking for more money (which we couldn't do anyway).  We really feel like God is giving us a tremendous blessing!  God is good, all the time!

Up, Up, and Away!

Today was a very big day for us!  Madi finally got her stander, after a very long wait.  She had it custom made by Ron at Hanger, who is amazing!  He doesn't measure and ship things off to be made like most people, but instead he actually custom forms and makes each item himself.  He has worked with tons of children with spina bifida and was the best man for the job.  It took a long time due to some miscommuncations and the fact that they do not normally make standers/parapodiums for kids, so all the parts had to be custom ordered and it was hand created.  It was well worth the wait, though!  Madi loves Ron and did quite well during her long appointment.  We were intially told the stander would cost $2,800.  Later they told us that because they were contracted with our insurance company, it would be $1,800.  When we showed up today, though, it was just under $1,400.  All of this, of course, is applied to our deductible through insurance, which is $2,500.  Though the $1,400 was much more than we origionally planned on spending, we would have had to eventually pay that much in the form of our deductible anyway.  It is worth every penny to see Madi standing up and smiling!  Tami, Madi's Physical Therapist, will start working with Madi on how to "walk" with the stander.  Basically she will teach her how to sway her hips and scoot around.  There are no wheels on the bottom, but it is smooth and will slide along an even surface.  I cannot believe how big she looks when she is standing up!  She is no longer my little baby, but a little girl (Well, she'll always be my baby, no matter what.  I always tell Conner that when he is 50, he will still be my baby and there is just nothing he can do about that :))!  We had a busy day today and are looking forward to spending more time in the stander tomorrow.  Watch out world, here comes Madi!

There always has to be a glitch...

(Sorry this is sideways. I took it with my phone and can't figure out how to edit it to turn it! GAH! It is mighty cute, though ;))

Today I called to check on Madi's stander and got some not-so-good news. The stander was finished, however, they were waiting on approval from CRS to be able to give it to me. CRS stands for Children's Rehabilitative Services, and it is the local clinic where all the doctors go to help children with special needs. It's like your one-stop-doctor-shop. They had already tried to get CRS's approval once and the stander was denied. They said this happens every time they try to approve something like this and that eventually they will accept it because they have to. So, because of some technicality, it sits there and we do not get to use it yet. Here's the kicker, though. We are self-pay through CRS because we are not on AHCCCS or Arizona Long-Term Care. All this means is we pay the discounted AHCCCS rate for our care instead of the standard rate. We still pay for all of her care, though. It goes to insurance first, then the rest comes to us. We also have our $35 co-pays (which let me tell you, those add up fast at 1-4 times a week, plus prescriptions and/or natural remedies), so it's not like this is coming to us free from CRS. That is not the case at all. The reason they deny it infuriates me in itself. It is assumed that Madi will need a wheel chair. It's cheaper, in the short-term, to stick madi in a chair than it is to give her the adaptive equipment to walk and the chair. In the long run, though, Madi walking will cost a substantial amount less. It is better for her muscles, circulation, self-esteem, cognitive development, etc..... to be standing. I think the hardest part of all is waiting while another person gets to decide my child's quality of life and what she "can" do. So, for now, we wait. I know it's all God's timing (but hurry up already!!) and will update you when it finally comes. Oh, and you may want to pray for a dash of patience for me ;).

Standing, here we come!!

Today was an appointment I am VERY excited about! Madi wants to be standing and upright so badly, but she just cannot make her little body do it. Because she does not have any movement below the hips, she is unable to support herself. Today we went in to get fitted for a parapodium, which is a device that will help her hold her body upright so that she can stand. She will also be able to move around with it. She won't be given a walker yet, since that would limit her ability to twist her body from side to side, but will be given a walking-stick type of device instead. Tami, her physical therapist, will work with me and teach me how to help her get around in it. Ron, from Hanger, is hand-making her parapodium for her. Don't ask me what it's going to cost because I don't even want to know ;). Tami and Ron talked so that he would know just how to design it. Unfortunately, it is not something Hanger normally makes, so he will have to order some supplies and we will not have the stander until right around Christmas time. I am so excited for her to finally get to be at her peer's level, though, and it is well worth the wait!!!. Watch out world, here comes Madi!!!

P.S. In case you are wondering about the photos... the first one is the mold they made of Madi's torso. I couldn't take a picture while they made it because I was helping to hold her and keep her happy. The second photo is of her getting measurements done.