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Saturday, July 31, 2010

We're just 2-3 weeks away!

Madi's fitting for her HKFO's went great!  First they casted her legs individually, then her torso.  They take the casting, pour molding in them to re-create her legs, then form the material around that to make the HKFO's.  Madi was a great sport and enjoyed all the extra attention.  She showed off how she knew to point to each body part, her eyebrows, her eyelashes, etc... and threw a few signs in there too.  Ron said it is normally about a 3 week wait, but he is hoping to have them done sooner.  Have I mentioned how much we love Ron?  We were not having good experiences at Hanger until Tami told us about Ron and we started seeing him.  He builds all of her equipment himself, by hand, and does an amazing job!  Here are a few pictures of Madi during the casting. 

And the Winner IS.....

Comment #14

Congratulations!  I will e-mail you now!  Check back Monday for another fun giveaway :)

Thursday, July 29, 2010

I feel like a kid in a candy store!

Tomorrow is the big day!  I take Madi at 11 to get casted for her HKAFOs (or maybe its HKFOs.....) and I am so excited, I feel like a kid in a candy store!  I had a dream about Madi walking, and I cannot wait to give her that oportunity.  I think she is going to love it once she gets the hang of it.  We already talked all about the appointment and about how they would help her "run" so she is very excited.  I will be back tomorrow with pictures, but this will give you a rough idea of what they will look like...

They will be made of AFO material, but will also have metal at the joints.  I actually do not think the above picture is very acurate, but it was all I could find.  I am hopiong they will also have a locking mechanism so that she can lock them in place to help her stabalize when she is standing still (like when she helps me cook).  I will keep you all updated!

Tuesday, July 27, 2010

Our Latest Amazon Purchase

We have been saving up the money we get from Madi's Amazon Associates account and are so thankful to have it!!  We have not bought much with it, because thankfully we haven't needed to, but we just purchased this for Madi...


Madi's physical therapist, Tami, wants Madi to practice climbing, since it will be important for her to learn to climb on and off of things.  It also makes her toddler bed accessable to her, as she will be able to get on and off of it independently using these stairs (if she ever chooses to sleep in it :)).  She can use them to help her crawl/climb on and off of the couch, our bed, her little table and chair set in the homeschool room, etc....  It is good for upper body strength too, which can't hurt.  We were stacking up stools, overturned bins, and other things, but it wasn't working very well.  I felt like they were either not stable enough, not wide enough, or she was banging her legs on them and they were too hard.  These were the cheapest, but also the tallest and most stable looking ones we could find.  Of course, insurance does not cover foam steps and things like that, so we got this with her Amazon money.  Thank you so much to each and every one of you who purchase through her link.  I know it seems small, but it is huge to us!!  I'll post some action photos and a video once we get them and Madi starts using them.  I'm pretty sure Conner will find them fun and entertaining too ;).

Does it get any cuter than this?!?!?!?!?

We entered a contest to win a Beco Baby Carrier but sadly did not win.  Beco did, however, send us this super cute kid's carrier, which is made for kids to carry their dolls around in.  Madi loves carrying her baby doll around in it, and it couldn't be more perfect since she needs to be hands-free when she is walking.  Conner tried it with the cat, and amazingly, the cat LOVED it.  He would not stop purring and was really mad when Conner made him get out!! Here is a link if anyone is interested at all... .  I also wanted to share a funny picture of Conner and Madi dressed up like spiderman.  We have lots of fun around here :).  Oh, and before I forget, Madi gets fitted for her first set of HKFO's on Friday!!!  Her orthopedic surgeon and physical therapist were both on board with getting them sooner than 2 years, and Ron at Hanger got us in super fast!  They had made us an appointment, which they said was his first available, in mid August, but called me back and said Ron wanted us in sooner and could get us in Friday!!!!  WOOOOO HOOOOOO!!!!

Wednesday, July 21, 2010

Win Something Fun..... A Kidco Frozen Treat Tray!

I've been wanting to do a fun giveaway for a while, and it never occured to me to offer up one of my new in the package frozen treat trays!  I have a few of these I stocked up on when Franklin Goose was offering credits for reviews and have an extra.  My kids LOVE homemade popsicles!  I love that I can put anything healthy in them, and they will eat it, just because it's frozen!  Today's mixture consisted of organic yogurt, blueberries, bananas, ground flax seed, and coconut oil.  Both the kids went crazy for them, and I love that they are getting something that is not only delicious, but also nutritious!  It's nice to say, "Sure, have a popsicle!" because you know what they are getting is good.  You can enter to win one treat tray, new in the box, for free.  I will even ship it to you for free, if you do not live in locally.  All you have to do is comment once below with why you want one.  Make sure to include your name and your e-mail address, and I will pick a winner and e-mail that person.  I'll give you until Friday, July 30th at midnight to enter and will pick a winner on Saturday the 31st using a random number generator.  Good luck!

Tuesday, July 20, 2010

My 100th Post!

Wow, this is my 100th post on Madi's blog!  I started this blog in hopes to provide support and inspiration for other families with similar experiences.  I hope that I have shown just how absolutely wonderful Madi's life is, and that while it is different in some aspects, it is still so much like yours and mine.  Madi is such a beautiful little blessing in all of our lives.  Here is a video I took of Madi today (pardon the poor quality, it was with my camera phone).  She is so ready to be running!  She doesn't let anything stand in her way!  It is amazing to get to witness her strength and determination every day!


I got this in an e-mail today from Hope Kids and thought it may encourage someone out there.  Enjoy!

A Daily Inspirational Message From Rob Cottrell


Hope is knowing that a positive outcome awaits and being okay that it might look different than you thought.

Hope is not only expecting a dream to come true, but having a deep assurance that it's within your reach.

Hope is knowing that you can't, but that God can.

Hope is knowing that God loves you more than you could ever imagine.

Hope is realizing that you don't need to know all the answers, God already does.

Hope is looking to the future with joy and having expectations of better things to come.

Hope is knowing that miracles still happen everyday.

Hope is something that never abandons you. Even when your life is filled with sadness and disappointment, Hope is a spark remains inside to help you get through the rough times.

Hope is often beyond our understanding but always real and true.

Hope is one of God's greatest gifts to you, because it's the magic that inspires you to keep living.

Hope is a very powerful medicine.

Copyright 2010. All rights reserved. All trademarks are properties of HopeKids

Friday, July 16, 2010

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. 

Tuesday, July 6, 2010

Hoping she's just normal baby sick.....

Madi's been a bit off for the last few days. She has a stuffy nose and has had a few puking incidents. During the day, she seems ok, but at nap time and at night, she just is not doing well. She wakes up unhappy and does not even want to nurse some of the times. Her fontanel and shunt line feel good and her urine output looks good, but whenever she is off, I get nervous!! She also kept tapping her head, like she was trying to tell me it hurt. She does not have a fever, so that part is good, though she never has when she had shunt problems (even when she had the infection, but I think it was because we caught it so early). We are supposed to go out of town for a wedding this weekend and the wedding is in a smaller town. I have not looked at how close the closest children's hospital is yet but I need to. I know that we most likely will not need it, but it is something I like to do before we go on vacation anywhere, just to be sure. It's something Dr. Moss told me I should always do, and it makes sense, so I'm sticking to it, even if it does make me one of those crazy over-protective moms :). When you say your prayers tonight, please keep my Madi in them.... we covet those prayers!