New Equipment

  Well Friday we finally received some of Madi's equipment. The medical equipment place sent out someone to show up how to use 3 new pieces that I hope we won't need to use this winter. One was her pulse oximeter that shows us her oxygen levels when she is sick. We can determine if we need to take her to the hospital or not. We also got a cough assist machine. When Madi gets respiratory infections the cough assist machine forces air into her lungs and then makes her cough. After a few times of the air pushed in and she coughs then we use the other machine, called the suction machine. Hopefully when she coughs she coughs something up and the suction machine can suck the junk out of her mouth. So we are still waiting for the wheelchair. The bad news with all of this was the insurance company. We will need these machines forever and they decided to rent to own to us for 10 months, ultimately saving them money! I would have met my out of pocket deductible by ordering this stuff but since they are making us rent we will have to start over come January! It is 1050 a month. I hope to complain to the insurance and have that changed. Then Morgan had a sleepover and we went to Subway. Madi was smiling away at everyone and waving hi. She was funny! She has decided that she loves chips! Saturday morning we went to Molly's soccer game. Madi was a good cheerleader and yelled for Molly! Saturday night we went to my school carnival. We had our friend Emily as a helper. I had to go in the dunk tank for 15 minutes and poor Madi cried when she saw me go under. She did not like it! I had to tell Emily to take her somewhere else while I was in. She played the dig in the rice game and the pick a duck game. It was fun! Yes I did get dunked several times. On Sunday morning Madi stayed home and slept in with Daddy while the rest of us went to cheer on the runners at the Quad City Marathon. Later we went to Grandma Rita's for lunch. Madi loved playing with Carmie and she got her pretty toe nails painted. She loves to stand up now and she always says, "I big girl" She is so cute! I am starting to worry about the preschool transition. I hope she gets in the morning session or else I don't think I will send her. Her teacher mentioned the afternoon session to the babysitter but that wouldn't work. That would mean Madi would have lunch at 10:45 and not get a nap. Definitely not an option. So pray that it all works out! I am also worried about her speech. I have been around a few 2 year olds lately and she seems more behind than she should be. I don't know if she will have other problems on top of her SMA because she was a preemie or not. I hate to think that she will be cognitively behind as well. SMA kids are supposed to bright and get along fine in a normal classroom with some physical accomodations. I hope that holds true for Madi. We are also trying to make the decision on the Standing Dani so pray too that we can make that decision and get the funds to pay for it. There may even be a used one on Craig's List or something! We are still getting donations and counting our blessings everyday for so many supportive friends and family. Madi continues to show progress and we just pray to keep her healthy through the cold and flu season. Her standing is amazing and she is starting to pull herself up on about anything. I hope to get a picture of her with her walker up soon. Have a great day!

WOW! Amazing Weekend!

First of all, I can't even express in words how grateful my family is for the support and outpouring of generosity that we saw this weekend! Our fundraiser was more than we could have ever asked for! Thank you to all who attended and those who just dropped off a donation or even prayed for the beautiful weather! Thank you just isn't enough! On Sunday I couldn't think of anything else except the fact that I felt like God was looking down on our family and we were surrounded in light! It wasn 't just small rays but huge ones! It was so weird because I had never pictured such a thing before! I felt like the whole community was being enveloped from the heavens. Sorry I know it sounds a little corny but it is the only way I can describe what my head was picturing and my heart was feeling! I hope I got to thank everyone and say hello. If I didn't I am so sorry and know that I am so thankful you came to show Madi and our family you care! For those of you who had other commitments or couldn't make it I know we were in your thoughts and prayers! The bands were amazing! Thank you to them for your generous gift and talent of music and your donation of your time! My husband did a great job organizing them. The Kids Zone was a big hit, thanks to Megan Graham and all the volunteers. The silent auction was huge and had so many fabulous baskets. Thanks to my mom, sister, and Kim! Thanks to my sister in law Brandi and my brother Bob for keeping the day running smoothly! All of my family who traveled from the Chicago area and Tom's family all came to show support as well. Like I said, I just can't even believe how many people came out and were soooooo generous! Our preliminary numbers say we raised about $12,000. We plan on paying off her wheelchair, paying off some existing medical bills for Madi, and then seeing if we have a huge down payment for the Standing Dani. I hope to add some pictures to this blog tonight but I wanted to get something up for everyone to read! I will have more to read and pictures to look at later! (Okay a few pics were sent to me and I wish someone would have told me to put on makeup! I think I aged 10 years in the last few months. I better get more sleep!) Please pray for a fellow SMA family the Turnbull's who are going through some really difficult times right now. Their daughter Stella is a type I and not doing well. They are in Iowa City, mom is Way pregnant with #3 and having to go through really tough times right now. May God be with them and give Stella some healing! THANKS again and God Bless, we sure are!

Okay one of the coolest things ever happened to me today! If you have been reading my posts I mentioned a really touching song called, "I'll Walk". Well my friend Kim has been fielding calls for me about the benefit and she called me and said I got a call from some guy about Bucky Covington or something. She is so clueless! Sorry, I love ya Kim! Well, the writer of the song actually had some kind of google alert out and got wind of my blog. He read it and felt moved so he called to talk to me! Can you believe it? Me? OMG I am still soooo excited!!!!!!!!!!!!! So I called him, his name is Brent Wilson, and I talked to him for like 1/2 and hour. He was the nicest guy ever! He told me that he was praying for my family. He has a little girl too and can't imagine what we are going through. Weird that my crazy life now seems routine! Anyway his wife is a teacher too! He is sending me autographed CD's and posters for the benefit! It's amazing how the singers get all the glory when the writer made it happen! O'well I guess it's a team effort! Bucky is pretty good! I can't wait to tell Madi about this someday! I am planning on her dancing to this song on her wedding day! I hope I make it that long! If you haven't heard it yet you better have some kleenex near! Go out and find it and listen. It is a great song!!!!! So that is the most exciting news today!
We are still getting donations in for the silent auction. I can't wait to see what kind of turn out we are going to have. If anyone still wants to help we can use baked goods for the bake sale. Anyone who wants to donate their time I have some time slots available. Let me know what time you want to work and I will let you know what you are doing. 3 more days! Crazy!

What a Weekend!

This picture was from Labor Day Weekend when we stopped at a State Park. Madi and Daddy!
This weekend was very busy getting ready for the exciting event next Saturday. My mom and sister came in town to help me organize and prepare all the items for the silent auction. We have over 60 baskets/items. Isn't that amazing! What generous friends we have! Madi was very excited that her Aunt Kelley, Grandma, and cousin Caroline were here to visit! Saturday we got a good start to the morning and headed to the cheer gym. Madi just jumped right in and crawled up, down, sideways and every which way that she can on the mats. What good therapy going to the gym is for her. Then we left and picked up Bailey and Taylor to entertain Molly, Madi, and Caroline for the day so we could accomplish something. Morgan was at cheer. We bought the last needed items, checked out hotels for the family, and then enjoyed lunch without children at Panera. We got home around 3 and worked until well past midnight putting basket items together and making them look presentable. My best friend Kim and her adoreable niece Elise spent their Saturday working on the baskets too.
Madi wanted to help quite a bit by getting right in the middle of all our stuff and saying, "I help you." Her favorite part of helping was the garbage. She would pick something up and say garbage and then crawl over to the garbage can. She loves to stand up holding on to everything now. She stood up on the floor holding on to the recliner and almost let go with both hands but still isn't quite sure. This morning she crawled up the first step and then turned around and sat down all by herself. Her smile was sooo big. She was soo proud of herself. When it was bedtime I layed her down and she rolled over and said, "Wake up!" It was funny but after the 2nd attempt she finally gave in and fell asleep.
Sunday morning she was so happy that Grandma went to the store and bought her waffles. Then she played with her cousin and sisters for quite some time. We had a friend stop by with her 7 month old baby and Madi really liked her. She would pet her and kept saying, "I want baby!" Then Molly said the FUNNIEST thing! She said, "Awww mom, she is sooo cute! Can we buy one of these babies?" She was totally serious! It was pretty funny! Another great thing happened tonight. It was bathtime and everytime I get her naked before the tub I put her on the little potty. She never did anything until tonght. I sat her on it then I told her to go pee pee and she pushed out and peed in the potty! Hooray! We all clapped and cheered for her. Oh wouldn't life be grand without diapers!
One final note! I heard the most amazing song the other day! It is called, "I'll walk" by Bucky Covington. OMG I cried the whole song. A girl ends up in a wheelchair and she says she'll walk and then on her wedding day it goes that she tells her dad, I'll walk and she gets up from her wheelchair. I can only dream for Madi. It just really touched my heart and I really want to buy that CD now. I guess so I can cry? Oh well I do that anyway! Please pray for nice weather on Saturday and that I keep my sanity until then. It will be a stressful week! Don't forget to leave comments on this blog page. I look to see who has visited and I am always sad that few people comment on my entries. I'd love to hear from all of you! Thanks to all my family, friends, even people I don't know who have dontated to the silent auction. I can't wait to report back to you how well we do. God Bless! Have a wonderful week!

On the road to mobility

    Well yesterday we met with the equipment guy to get some things ordered for Madi. We are pretty sure that insurance is going to help pay for the wheelchair. So we ordered one that is just her size. It is in pearl pink. We'll see if it gets approved or not. We are also ordering a cough assist machine that helps Madi cough when she is sick. This will hopefully prevent the pneumonia that is so common in SMA kids. We have to order a stander and a walker. We are very hopeful that she will be able to use the walker someday. The most expensive thing that we would like Madi to have is something called a Standing Dani. It is a stander that is powerized. She gets in the standing position and can move a joystick to travel while getting her standing time in. She needs to stand about 2 hours a day to build bone density. This is not considered a necessity to the insurance company, but wouldn't you say having a 2 year old stay in one spot for 2 hours is torture? The estimated cost for one of these items is $14,000.  

    I haven't heard from any of the celebs yet. I did invite John McCain and Sarah Palin in addition to the celebs I mentioned the other day too. I can't believe I'm not at the top of their priority list! Haha! 

    Breaking News again! Madi has  mastered crawling up a few stairs all by herself! She did it at home and at the sitter. Now I need to be following her! Believe me I am grateful for that! I bet she will be getting upstairs in no time. Well 8 days and counting until the benefit. Good Luck to all our fellow SMA families who are enduring the Beaver Dash next weekend. Wish we could join you! Have fun! Thanks for all your support. God Bless all of those remembering the horrific events of September 11, 2001. All who were adversely affected are in my prayers.

I invited the celebs!

Well guess what I did? I think it is so cool! It was Tom's idea but I had a lot of fun doing it. I invited Oprah Winfrey, John McCain, and Barack Obama to Madi's benefit. Ha! Isn't that funny? Ya never know unless you ask, right? I sent them both emails so I we just have to wait and see.
Not much new on our scene. I was so sick over the weekend and so they had more daddy time. Madi is definitely in her two stage. She keeps hitting or pulling her sister's hair if they get remotely close. She still loves the bars. She will say, "I stand up!" or "Wak, Wak" which translated means, walk walk. She really thinks she is fancy now when she goes over the back plastic piece at the end of the walk. She makes me nervous! She even tried going from the bars to her pink chair. She is getting quite brave. She also LOVES to ride the John Deere with her daddy. As soon as she heard the mower start up on Sunday she whined until Aunt B. took her out to get on the mower with him. She smiled the whole time! Then her sisters followed and had a ride of their own.
Today we began our weekly therapy schedule! Today was O.T. She is getting really good at her lacing cards. Tomorrow water therapy, and Wed. we are meeting with the equipment guy to talk about a wheelchair. I will let you know if I get a response from either of the celebs I invited. Wouldn't that be cool?
This picture is from our family outing on Labor Day weeekend. On the way home from the wedding we stopped at a state park and then at the Field of Dreams. It was a lot of fun!

New things everyday!

Madison is continuing to surprise us all.  She is still getting stronger. For a little girl who was never supposed to walk or get any stronger she is defying all odds. Last night she pulled herself to a stand on the parallel bars at home and then walked down them. We had physical therapy on Tues. and Wed. On Tues. she tried a manual wheelchair and she knew how to do it instantly. She chased Molly across the room. I had tears in my eyes! It was so exciting that she could get where she wanted to go! She also went on this little double seater sit and spin and made it go by herself. I couldn't believe she didn't fall off. Her trunk control has improved a ton! Then on Wed. She took a few steps in her walker again. She just has to figure out how to move the wheels on the walker and then her feet. We are counting down the days until the benefit. I hope all of you can make it. Please keep our friend Sergio in your prayers. He is fighting leukemia!  God Bless!

Making Madi Mobile Fundraiser!

Megan has been working hard putting together a fundraiser that is just 3 weeks away! Proceeds from the fundraiser will help purchase the Standing Dani to help Madi stand upright .

Making Madi Mobile

September 20, 2008

Noon - Midnight

Overtime Bar & Restaurant

Kids $10/Adults $20

Kids Zone Noon - 3:00pm

"Myers Brother" Live Band for Kids

Carnival Games

Sno-Cones

Cotton Candy

Popcorn

Adult Fun 3:00pm - Midnight

Live Bands, Silent Auction & More

Please spread the word and help make this even a success! Feel free to click here for the flyer and pass it out to friends & family!