Crazy summer!

Well we have been so busy this summer and Madi is getting so active. She loves to play and will say "I play." She really loves her new chair that Grandma Maureen bought her. It is pink and fuzzy and low to the ground. She is learning to get in and out of it by herself. She spent last weekend with one of her favorite people, Daddy. I guess she even snuggled with dad for a few hours each morning in our bed. Mommy went out of town and she had fun. Big sister Morgan read her a night night story too. How cute! She was very excited to see me when I got home on Sunday. Today she woke up at the normal 7:00 time. She called for all of us a few times and her sisters finally went in her room, crawled in her bed, and read her books; a morning ritual to give me a few minutes to wake up. She gets over them after a few and really wants mommy. We had breakfast and played with her shoes for awhile. She loves to put her AFO shoes on and off all by herself. Then we had to go to my dress fitting. While there the lady told us they were the cutest girls to ever come into her store. How sweet and it must be true, right? I also got my first silent auction donation while we were there. Yeah for me! Then we went home and had the all american lunch, hot dogs and mac n cheese. Madi took a nap and then our friends the Lewis' came over for play time. Madi wanted her beep beep (her car) and a popsicle. She was good to go for a little while. After they went home we played until dinner. Aunt B and Grandma brought dinner, our typical Monday. Then B watched Madi until we got home from volleyball. Sometimes I wonder if I would win over B, when it comes to Madi it would be a close race.
Our first water therapy went great last week. We have it again on Wed. God works in mysterious ways. When we got into the office, our friend Annie and her dad Darren were there for therapy too. He showed us where the pool was and to our surprise our good friend Maggie and mommy Keely were in the pool doing therapy. What a nice support group for our first visit. Madi did great. I had to get in with her but we had fun. She worked on walking, kicking, standing and some other fun stuff. Our therapist is wonderful. We look forward to this Wed.
We are going swimming tomorrow and have a rainforest party at Kim's on Thurs. I will write after our eventful week. God Bless you all and thank you for the support you give our family. Please add a prayer to your list for our friends the Waugaman's. Their little boy has been diagnosed with leukemia.

Madi's therapy

Today is Friday, June 19, 2008. Madi had a busy therapy day on Wednesday. Her physical therapist and occupational therapist came at noon. They were very impressed with Madi's strength. She is crawling strong right now and consistently pushing herself up to a tent position. She worked on going up a stair several times and then wore out. Her OT brought her some new toys to hopefully help her when it becomes wheelchair time. One is an energizer bunny that plays music. She pushes a button which triggers the bunny to dance and play the drums. The other is a button with recorded voices that she presses and then hears the words or song. I recorded itsy bitsy spider, which she likes and later Morgan had already discovered how to record her own voice and recorded over me. Then later that day we saw our AEA teacher. She played with blocks, balls, puzzles, and looked at some pictures to identify. We are trying to help Madi make a transition in January to preschool. Her final appt for the day was at Genesis for an evaluation so that she can begin water therapy. We met her therapist and had fun playing with toys there too. She was exhausted on our way home. On Friday the whole gang came to watch me play vball and then we were going to see a movie playing outside, but unfortunately the rain ruined our fun. So we went to our friend Erin's house and played with her niece and nephew. Madi had a great time playing with large Duplo blocks. Malorie and I got the flyer done for Madi's benefit on September 20. I am excited to have the planning underway. Today was another crazy day. Madi was so happy to see Grandma Maureen coming to visit. Of course we went to the mall. On the way there Molly was asking for gum. When I said we would buy some somewhere Madi yelled out,"Yeah Gum!" It was hilarious! Then we went to our best friends' Nana's wedding and it was a lot of fun! We took lots of pictures with our best friends, Cade and McKenna. Then Nana, who looked so beautiful, took a picture with the Ramirez girls too. After that we went to our friends the Dekeyzer's house. We had lots of fun at the cookout and playing. Madi ate a little sand but all is well. Of course before bedtime, as always, she stated "I hungry!" That seems to be her attempt to avoid bedtime lately. Now all is well and the house is quiet, FOR NOW! Thanks for keeping Madi in your prayers. God Bless!

My first blog

Well this is the very first blog I have ever written. I am excited to have the opportunity to share with all of you our busy lives. I wanted a way to update everyone on Madi's appointments and experiences in her life. Thanks to my brother Bob I can now do this on our very own website. Today was a busy day! Madi stayed home with babysitter Rachel and then met her mom and sisters at the gym. Then we all went to the pool with our best friends, the Lewis family. We had a blast. Madi loved trying to stand. Every time she would stand, with my assistance, she would say, "I did it!" It was sooo cute! She absolutely loves the water. She went right to sleep on the way home in the car. But as always, she wouldn't have anything to do with sleep when we got home. Her cat nap was enough. She doesn't like to miss out on much. She had dinner and played. She has a busy day ahead of her tomorrow. The poor thing has physical therapy at noon, a meeting with her "teacher" at 2:30, and water therapy at 4:00. I'm sure she will go to bed early tomorrow. I will post again tomorrow to let you all know how our day went. I have to go get Madi, as always, she doesn't want to be in bed if her sisters aren't.

StandingDani.com

Thanks to cousin Kathy - we have a link to the standing Dani! Of course - I was spelling it wrong. The device Madi needs to help her stand is located at StandingDani.com

Standing Devices for Kids

One of the things Madi will need soon is standing "Danny". Because of the weakened muscles caused by SMA, Madi cannot stand. By using a device that helps her stand, her muscles will grow and she may have a chance of learning to stand on her own. I found a case study on the benefits of standing for children. In the article, Ginny Paleg- a physical therapist, talks about both the phsycial and emotional benefits of children learning to stand.

I also found a site called OttoBock that makes a variety of standing devices for children. I can't seem to find a standing "Danny" but they have a standing "Charly". I'm trying to find out if these are the same thing.

KidsMobility.org - The Kids Mobility Network is a cool organization in Colorado that finds Durable Medical Equipment (DME) like wheelchairs, standing devices, etc. that are no longer being used by the current owners. They re-condition the equipment and then donate it to under-insured or un-insured families in need.

InfinitecDME.org - DME stands for Durable Medical Equipment. InfinitecDME.org is an Illinois organization that provides equipment for children and adults with disabilities. Individuals can donate or sell DME at this site.

IowaCompass.org - is a used equipment referral service, similar to the one in Illinois. Individuals post classifieds here with used medical equipment they are selling.

I spent a lot of time tonight just researching where you can find the kinds of medical devices Madi will need - hopefully some of these resources will help!!!

Garage sale was a success!!!!

What an amazing sale! A few weeks ago we held a garage sale to help raise money for Madison so she could get a "Standing Danny" - a machine that will help her stand and develop leg muscles. Sydney Young, Madi's cousin, was really the driving force behind the garage sale and worked hard to raise money. When all was said and done - everyone raised nearly $1300 dollars!

Items to sell at the sale, as well as cash, were donated by friends, family, neighbors and shoppers! We'd like to thank everyone who contributed; Sean Crossley, Jeff & Kathleen Grange, Bruce Aronson, Amy Buchanan, Mr. & Mrs. Tom Grange, Eileen McShea, Mary Kozlowski, Christine Remmes, The O'connell Family, Mr & Mrs Beano, Nicole Goyette, Kathy Casey, Brad & Valerie Wolf, Lilia Gonzalez, Jim & Nancy Marino, Dan Reuland, The Deleon Family and all the shoppers & those who donated money above and beyond their purchases!

On Sunday, July 6th the garage sale story was reported by the Naperville Sun. Thanks to Barb who took the photos and Marie Wilson who wrote the story.

Welcome to MiracleForMadi.com

Madison Ramirez was born in December of 2005, the third of three girls. A few months after her second birthday, Madison was diagnosed with SMA - Spinal Muscular Atrophy.


Spinal Muscular Atrophy is the leading genetic killer of children under 2 years old. It has only been 2 months since Madi was diagnosed with SMA and we are working hard to understand this disease and find ways to help Madi.
Various members of the family will be contributing to this blog. I am Madi's Uncle Bob (Bo) Buchanan, and Madi's mother, Megan Ramirez, will also be contributing.