WOOOO HOOOO! Great News for Madi!

Madi has an Amtryke at home, which she LOVES and rides often, but I was hoping for one for her to have at preschool as well.  The preschool Madi goes to on Thursdays, and will soon be attending twice a week, always has tricycles out for the kids to ride.  Madi can never ride them, though, because she needs a trike she can work with her arms, not her legs.  Whenever I've gone to help, Madi has really wanted to ride them, but it just doesn't work.  Since I can't very well tote her, her chair, her supplies, AND her Amtryke to and from preschool when she goes (since she has about 2 1/2 years of preschool ahead).   I decided to write up a "Wish" for Madi on the Amtryke site, stating that it would be used for preschool for her.  Our wish was granted in FULL!!  They are sending Madi a trike for preschool!  It will have hand petals, foot blocks, a little strap to keep her knees in, a helmet, and a seat belt, just like she needs!  We are SO excited!!  Now Madi will be able to cruise with all of her friends!  YEAH!

A HUGE HUGE thank-you to the Texas Ambucs Chapter, who donated this trike for Madi.  We are so thankful for you!

If anyone would like to donate to this very cool program, or would like to submit a wish for their child, you can go to www.ambucs.org, or e-mail ambucs.@ambucs.org

Loving Our Amtryke, a Few Funnies, and a Few Updates

The weather has been beautiful outside so we have been spending as much time as we can enjoying it.  Madilynn has been really loving her Amtryke and, in fact, loves it so much sometimes she refuses to get out of it to eat, so I have to set up a make-shift table on the chair.  If I have to put away laundry, I pop her in and push her around with me.  Because her feet cycle when I push her or she uses the hand petals, it is amazing for her circulation.  I had to take a picture because it's just too cute!  In this picture I had tried to take her out and had already taken off her shoes and unstrapped her, but I put her back in when she started breaking down, which is why her feet are undone.  Normally her feet are strapped in as well.

And a few recent funnies from our house....

#1:

Me- Madi, how old are you?

Madi- (holds up 5 fingers and shouts) 3!

Me- Madi, you are not 3, you are 2.

Madi- No!  Madi 3!

Great, she's already trying to be older than she really is! 

#2- I was roasting a chicken on the rotisserie.  I already feel morbid enough while I do this and don't enjoy.  Then you add in Madi shouting, "Mmmmm, baby chicken!  YUM!  Baby chicken!  Cute chicken!" as I do it.  After I took it out to serve, I was cutting it in pieces and Conner kept pretending to make it talk saying "Ouch!  You are cutting me!  I don't like this!".  Thanks for the help, kiddos ;). 

Updates:

- We get our grass in TOMORROW!

- Our first homestudy is in two weeks!  I guess we need 4 because we are trying for International.

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.

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!

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!!

Woo Hoo, we found something COOL and AFFORDABLE!

Today when Tami, Madi's physical therapist, was over, I was telling her about a tandem tricycle I had found and was wanting to get.  It is $350, though, so it was going to take a while to save up for it.  She told me about a very cool tandem attachment for the Kettler Trike, which Conner already has, and helped me find it.  We already have enough Amazon Associate money saved up to buy it, and I am so very excited!  I am going to request her Amazon money so that we can purchase it for her.  Here is the insert and the harness that we will be getting....

We still want to save up for a Tumble Form Ready Racer or an AmTryke, which are both little bikes she can operate by herself and are made for children ages 18 months and up, but this will be a great option for her in the meantime.  Conner and Madi can ride together for walks, in the back yard, etc... and Madi can feel like a big girl, doing what her brother does.  She ALWAYS wants to be like her big brother, which is awesome but also challenging when the equipment to help her be independent like she wants to is so darn expensive.  We are trying to search for a place that lends out AmTrykes or Ready Racers, or a used one to purchase, and hope to find one that way. 

Be on the lookout for pictures of Madi cruising around with Conner, I just know she's going to love it!  Kettler Tandem Insert, $70.  Kettler Seatbelt, $18.  Seeing Madi and Conner play and laugh together.... PRICELESS!