A Big Surprise

Sorry it has been so long since my last update. My three monkeys keep me pretty busy. After I put them to bed I pretty much pass out on my bed for the night. We had a huge and great surprise happen to our family on Thursday morning. I was surprised in my classroom by the Royal Neighbors of America gift patrol. My friend, and also fellow Moline school teacher, Julie Bender, nominated me to win a grant to help Madi get her Standing Dani. Well they chose me and came to school and surprised me with balloons, a plant, a TV crew, two newspaper reporters, and a large check for $4000. Wow! It was almost exactly what we needed to get the total of our fundraisers up to what we need to purchase the Standing Dani! Talk about Christmas miracles! It was so exciting. We are so grateful to live in such a supportive community that just keeps on giving and helping our family unexpectedly! We can't wait to order her the pink Standing Dani.
Another great thing happened this week. We had Madi's IEP. For those of you who are not teachers, it means, individualized education plan. Every student with special needs is given one of these to determine what services the school has to offer. Madi will be attending an integrated classroom of 3 and 4 year olds in January, twice a week. She will receive her occupational, physical, and speech therapy during this time and also learning some other things I hope too. She has a special chair that she will sit in, called a Rifton chair. It is just a little more supportive and has sides and a belt for her. She also is going to have something called a crocodile. This is a special walker that my therapist and I just tried last week that Madi could actually walk in. I was so excited! We have literally tried every other walker that is made and this was the last one. Madi couldn't make any of the other ones go, but she took off in this one. It has attachments that catch her if she falls too. I will be sure to post a picture when we get it in the classroom. We went for two different visits last month and Madi seems like she will enjoy it. I think it will definitely tire her out. Her attention span isn't quite there yet but hopefully with a little practice she will increase that time.
In the last month I have been to Iowa City a few times for some routine check ups. We saw the orthopedic doctor and they xrayed her hips. Unfortunately her hip sockets are about 50% covered. This means they can slide out of place and cause some pain. She doesn't seem to be bothered by it yet. He said usually they would do surgery on other kids but he wasn't sure Madi could recover from something like that and she was doing so well he didn't want to damage any progress she has made. He also said she no longer has to wear her hip brace at night. Yeah! It really won't do her any good anymore. She was given a new prescription for her ankle braces. When I ordered those I got her purple and lime green with polka dots. We are waiting for those to come in. On another trip to IA City we had a 3 hour appt to have her evaluated by a psychologist and speech therapist to determine her level of functioning. As we expected, she does have some developmental delay. She is functioning at the level of about a 2 year old. We all assume this is due to her prematurity and not SMA. Most SMA kids are very bright. They did say she was on the verge of some really great skills and she could jump up in range quickly. We'll see. She was kind of a stinker that day too. Nothing unusual there.
Overall Madison is doing great! Knock on wood she is healthy right now. She is looking forward to Christmas. She knows who Santa is and wants Dora for Christmas. Unfortunately her birthday is two days after Christmas and I am all out of ideas. When she has two older sisters there isn't much we don't have. Her favorite saying right now is "Hungry, food" It is pretty funny! Oh and she asked for McDonalds the other day when we drove by it. I wanted to buy it for her so bad because it was so cute but I avoided the urge. That same day she became a candy thief. I had all three of them at the grocery store with me and Molly and Madi were in the front of the little car cart driving away. Well while I was in the check out line Molly yells, "Mom, Madi is eating chocolate!" Sure enough I look down and find a wrapper to a giant Reese's peanut butter cup on the ground! I guess she wanted that huh? It was pretty hysterical! I handed the wrapper to the check out girl and said, "I guess I'm buying that too." Madi really didn't get it! I am so grateful and thank God that my baby will be turning 3 in 6 days! I count every day with her as a blessing! I just know that in her lifetime there will be a cure for this horrible disease! I really hope it is soon! I hope to write again soon. We wish everyone a Merry Christmas and Happy New Year! Love, Megan

Lots of appointments.

Sorry I didn't get to finish my post last week. It was a busy week. I had parent teacher conferences. So on my week off I posted that I visited Madi's preschool. Then on Tuesday I took her to Iowa City for a checkup with Dr. Matthews, her neurologist, and Dr. Starner, her pulmonologist. Things went well. We saw the neurologist first. She was happy with the progress Madi has made physically but she said she should be a little further along in her speech. She suggested more speech therapy and an evaluation by a psychologist to get a good idea of her cognitive age. Then the pulmonary dr. came in and asked about the machines we got and how it was going. I told him I only had to use the pulse oximeter once and not the other two yet. He suggested we start putting the couch assist machine in her face maybe once a day so if she needs it this winter she won't be scared of it. A lot of SMA kids have to have oxygen monitored throughout the night and he said he didn't think Madi would need that anytime soon. So that's good. He thought she looked great and was doing well. Then the MDA representative came in and just talked with us and asked how things were going. She was very nice. I am going to try and sign Madi up to be an MDA ambassador. Then they decided she should get a flu shot. So they only wanted to give her a half dose since she had never had it before and then in six weeks she has to get the other half at home from the pediatrician. Boy was she mad! You should have seen the look on her face. She looked at me like,"How could you have ever let them do that to me mom?" It was awful. Even the nurse said that was the saddest look ever! Then she screamed for about 10 minutes. Poor thing, I can't wait for the next round! I think I am going to get Molly and Morgan one too. That should be a great time! We finally left Iowa City about noon and got something to eat. She charmed everyone in Burger King by smiling and saying hi. She fell asleep on the way home. When we got home it was time for the speech therapist. She said Madi had improved greatly! She thought she was behind but not too significant. She said usually a person can understand about 75% of what a 3 year old says and we can understand Madi about 50% of the time. I suggested more therapy time and she said when she gets in school she will have it once a week. So I guess we have to wait until then. Then immediately after the speech therapist left the physical therapist came. Poor Madi! I never really thought about how exhausted she would be. She was not interested in P.T. at all! So she ended up not staying very long. Miss Madi was a little crabby and had every right to be! The next day was Wednesday and I took all three girls to the dentist. Morgan and Molly did great! They made me send Molly back by herself. It was so sad. She just took Morgan's hand and walked back like a big girl. Then they called me back with Madi and Madi did not want to sit in the dentist chair. I sat with her and she just cried. All he did was check her teeth and gums. It was real quick and painless. She has just seen way too many doctors in her short little life! Then I attended Morgan's Halloween party on Wed. and had her conference. Then on Thurs. was Molly's Halloween party and conference. What a week! Halloween was great! Aunt Brandi spent the day with us and went trick or treating with us in Bettendorf. Morgan was a very cute elegant witch. Molly was an adorable Tigger, and Madi was a little puppy! I will hopefully put some pictures on this post tonight. They got more candy than anyone ever needs. Madi kept eating the candy every time someone handed her a piece. I couldn't get it out of her hand quick enough and she would put it in her mouth wrapper and all. We had to dig the wrapper out of her mouth twice. We are STILL waiting on new of the standing dani and wheelchair. Next Friday we go visit the orthopedic doctor in Iowa City and then on Dec. 4 we go back for the evaluation that the neurologist ordered! I hope everyone had a great weekend! My cheer team got 1st in St. Louis. Yeah! Happy Veteran's Day to all of you military vets out there!
Love, Megan

Our busy weekend!

Okay so it has been a week since I last posted. We had a very busy weekend. Friday night we went to Frank's Pizza with some friends. It was fun.Then on Sunday we had Molly's last soccer game. After a rough start, she didn't want the season to end. Madi cheered her on. Then we we to the pumpkin patch with the Lewis' and their friends Aaron and Nancy. The first patch was kind of a bust, it was expensive and the kids only went on the straw castle. Which Madi couldn't do because it was too small for me to fit in with her so she had to watch. It wasn't easy pushing the stroller through the hay either. So then we went to the Camp Abe Lincoln patch and we had fun. The girls all sat on a horse for the first time. Morgan loved it, Molly cried and wouldn't go for a ride, and they let me ride with Madi. She loved it. I hope that means she will like therapeutic riding when the time comes. Madi also loved the jump house. She just sat on the edge and yelled, "Bump, Bump!" which means jump in Madi language. Then we did a little archery where Madi just cried the whole time cuz she wanted me while I tried to have some fun. I hit the target both times. I was pretty good! Watch out Ted Nugent! HaHa! Then we went to get snacks and it took what felt like forever! Cuz Madi just cried the whole time until I gave her a snack. I had carried her around the whole place because the stroller didn't really work in the grass or on the trails. My arm was exhausted and so was my patience by the time we got to the snacks. She refused hot dogs and just ate the snack mix. She drank like half a bottle of apple juice and I was worried cuz I forgot the diapers. Man I hope potty training is in the near future!. Then we finally went home. Madi crashed on the way home. She got a pretty good nap. Then we went to our neighbor's bonfire. It was fun until Madi got crabby. Then we went home and woke up Sunday ready to go! I made the girls clean, clean, clean! Then we went to Grandma Rita's. All the way there Madi said,"Carmie,Carmie" THat is my mother in law's dog and Madi loves her. WE ate dinner on the beautiful new patio that Todd and Tom made and then the girls stayed while I went to cheer practice. Grandma did pedicures and Madi had her cute toes painted too. Sunday night we went to bed early! Today Madi got some new shoes. She needed some easy shoes to put over her AFO's. I think these are better than the tie up ones I had. I am starting to put her ankle braces on all day cuz I am worried about how her ankles cave in right now. Every time she stands she puts the inside of her foot down so her ankle almost touches the grounds and that is how she gets to a standing position. So I hope having her AFOs on will help. I spent the entire day today on the phone making appts. for Madi and trying to figure out the standing dani. We are working with the Davis Made people to get her a standing dani. I am frustrated because my therapist isn't sure if she wants to write a letter for it or not cuz she isn't confident that Madi can operate it. I just don't think people understand. THere were so many LITTLE kids at the conference and I have seen many kids on blogs that learn and operate this thing very quickly. I have no doubt in my mind that Madi will pick it up quickly. She tried it at the conference and knew what the joystick was for. So on Friday we have to go to this medical equipment place and have her try a power chair so our therapist can see if she has potential for it. Tom was super mad! He thinks they misunderstand her mental capacity or something. I know the therapist is trying to be safe but I don't think she understands! If she won't write the letter we have a used one that we can purchase if we have to, but then we wont get the warranty. So, I know I have written a book here but just wanted to update for those that care. I will post when we find something out.Have a great week! Don't forget to check out my care page miracle for madi. See the exact address in my last post. I can post a lot more pictures on that site. And I should have pics on my facebook soon too.

SMA awareness on TV

We are so lucky to have had ABC's Extreme Makeover help a fellow SMA family. It was so neat to watch the show on Sunday night and meet such a beautiful, mature, and intelligent little girl. I am so happy that now so many people in the world saw what SMA is and how it affects everyday life. I have such a positive outlook on the future and I am only hoping that when Madi is 8 or 9 there will be a cure out there. I had many tears while watching it and lots of people called me and shared their feelings about the show.
On another note, Madi is still doing great. She has a bit of a cold right now and we are hoping that it doesn't turn into anything serious. Unfortunately I was sick, still am, all last week and I think she got it from me. She woke up a few days ago really hoarse. She sounded so cute, but it really isn't cuz she can get pretty sick. Last night she woke up crying and I couldn't figure out what was wrong. She still doesn't tell me when something is wrong. I tried out our new pulse oximeter and it said she was at 99% for her oxygen levels so all was good. She wears a hip brace at night and lately she has been telling me, "It hurts" It is so sad but I don't know if she has learned that I feel bad for her and take it off or if it really hurts.
We continue our weekly therapy sessions. Our water therapist just had her baby! Congrats Tara. She has a baby boy named Griffin. One of our best friends, the Dykstras had baby number 4, a girl, named Abigail. And last week our friends the Osborne's had a baby girl named Natalie! Lots of new healthy babies to be thankful for.
We are waiting to hear from the Standing Dani people. They have to come give us a quote and measure Madi. We are also awaiting our wheelchair. I will be going to Madi's preschool in a few weeks to check it out. Thank goodness her preschool teacher was thinking ahead and saved a morning spot. I think Madi will really like school. I hope we have her standing dani by then.
I am still in awe over the generous people that we have in our life. I don't feel like I have thanked enough people for all the donations and time they spent helping us with the benefit.There are so many people to thank individually we would not have been so successful with out you! We are truly indebted to each and everyone who helped out in any way. Whether it was just going because you are a friend of a friend, going to help, just wanted to say hey, came from out of town, whatever the case thank you!! But most importantly please know that from the bottom of our hearts- we are truly and deeply appreciative of each and everyone of you and what you have done for us. Thank you! I also keep a similar blog on www.carepages.com/carepages/MiracleForMadi If you go there and sign up you can get an email that will let you know each time I post an update.

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!

Donations pouring in!

I am so grateful and humbled by all of our support from our family and friends. We are so truly blessed to have so many wonderful people in our lives! We have so many donations for the silent auction coming in. I hope we are as lucky when it comes time for bidding on these items. I bet we have over a hundred auction items right now. We have an authentic football signed by Walter Payton! Wooo HOOOO! That is soooo cool! We have pizza for a year, Bears tickets, Iowa tickets, gift cards! I hope everyone can come to our fun event! I can't wait. I am already stressing about what Madi is going to wear! We went to Morgan's school's PTA meeting tonight and they are donating money to Madi. I feel so lucky and guilty at the same time for the wonderful people and organizations that want to help us. Madi is one loved and prayed for little girl. I really think that is why God is granting us the miracle of the little walking that Madi is doing. I can't wait for Sharon to see her tomorrow! All the girls are doing great! They are adjusting to school better now. Molly started preschool today and boy was she cute! She wanted Madi's hair like hers today, in pigtails. They were adoreable!

Miracles do happen!

Well I hope everyone is in for some exciting news! Madi is a living miracle as far as I'm concerned! Her daddy helped miracles come true! Tom invented some parallel bars out of PVC pipes. They sit about a foot or so off the ground. They are about 5 feet long. We place Madi in between the two bars and she puts most of her weight in her hands and Madi can walk from one end to the other. It is something I didn't think I would ever see! I still can't believe it! She is VERY slow but she does it completely by herself. We have had water therapy and physical therapy this week. At her PT yesterday the therapist got her a reverse walker with wheels and Sharon supported her hips a little but Madi took 3-5 steps with that. The therapist,Sharon, said, " This is every therapist's dream!" Oh believe me, beyond my dreams! I can't stop thanking God. I told Madi to thank God for her miracle tonight and she looked up to heaven and said "Thank you God!" I swear she did! Molly likes to do tricks on the new bars. Tom even painted them pink and purple. As soon as I can figure out how to upload pictures I will put a picture of her walking on this website!
Morgan has started first grade! She is enjoying it and doing very well. She is very smart and a very good reader! We have all had a rough time adjusting to the new school year. I hope things can improve over the next week! Molly starts school at St. John Vianney next week. I am sad I won't get to go her first day, but Daddy will be taking her. They both had tumbling tonight. Molly loved every bit of it! She does flip flops with the teachers and thinks she is soooo cool! Morgan has mastered her flip flop very nicely on the tumble trak! She has almost got her round off flip flop down. Tonight she started working on back tucks! Pretty amazing! Please continue to pray for our little miracle Madi. All of your prayers are working. She is living proof! I hope to have pics up ASAP. Talk to all of you soon! God Bless!

Madi's new trick!

Well I have been trying to keep this blog updated but my computer has been giving me fits. We have been blessed with many prayers that seem to be working for Madi right now. She continues to amaze us everyday! She has a new trick that I never expected her to do. My mom bought her this cute little pink chair that sits close to the ground. We have been working with her on getting in and out of the chair in hopes that she can do this herself. Well on Saturday morning she showed Tom what she has really been up to. She pulled herself to a stand. She puts her little hands on the arms of the chair, gets her legs out behind her, then slowly moves them in step by step. She has done this many times now and even gets fancy and lets go with one hand. We all clap and give her praise. She smiles sooooo big and is so proud of herself. She can stand there for 3-5 minutes! I can't wait to show our therapist! She will be just as excited as we are. We know that all of these little miracles are because of so many prayers! Please continue to keep Madison in your prayers and our spunky little Madi will continue to shock us all!

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.