Friday, February 4, 2011

Mail in those cards!

Well...we're off to the races, even if it is a little slow! To give people time to collect those cards we've decided to extend the collection until the end of April. For now - here are the collection details:

Arizona - give your cards to me, Bo Buchanan. I'm still working on places to drop them off - but for now you can mail them to Bo Buchanan, 4410 N. 33rd place, Phoenix Arizona 85018.

Illinois - for now, you can mail them to Sydney Young, 502 61st street, Lisle IL. 60532

Iowa - mail those cards to Megan Ramirez, 21005 277th Ave. LeClaire, IA 52753

As we get new places to drop off the cards or any events scheduled - we'll let you know!

Friday, January 28, 2011

All about Madi and SMA

Madison Maureen Ramirez was born on December 27, 2005. She came into this world eight weeks early and gave us all a little scare! But true to her personality, she was quite stubborn! She was pretty healthy for a 3lb 9oz baby! She was in the NICU for 5 weeks to grow and get big enough to come home. She came home at a mere 4lbs! Over the next two years she was fairly healthy. We had one bout of pneumonia and all the other junk babies get. But at 2 Madison's physical capabilities were lacking. We had been attributing her slow gross motor skills to her being a preemie. Doctors said she would catch up by the age of two. Well at two I went looking for answers. After going to one well known hospital, the doctor there spent all of 15 minutes and diagnosed her with cerebral palsy. She said that many preemies end up being diagnosed with even a slight case. She said Madi would be fine. Well, needless to say I wasn't very happy about that and didn't agree. How could she decide that in 15 minutes? So I went looking elsewhere. A good friend of mine suggested that I go see the Shriners that were coming in town. So I did. They took pictures of Madi and wrote down some health information and said they would let me know if she would be accepted. A few weeks went by and she was accepted and we headed to Chicago for our first visit to Shriner's. The doctors we saw were amazing! They each spent as much time as we needed and asked all the right questions. The neurologist, Dr. Silver, told us about this disease that he wanted to have her tested for. They took 7 viles of blood from her poor little body! It was called Spinal Muscular Atrophy. Just to rule it out, he said. So we went home. I looked it up but didn't read too much and kind of blew it off. It wasn't until 5-6 weeks later that the doctor called us back. It was a Sunday afternoon in April. We were playing outside with the kids when he called and asked me to get Tom and go sit somewhere private so we could talk. My stomach was in knots. I had no idea what he was about to tell us! He went on to give us the worst news of our life! Our daughter was diagnosed a Type II child with Spinal muscular atrophy! He went on to make sure we knew how serious and life threatening this was. It was a disease with NO cure and degenerative. She would progressively get worse! He made sure we understood that Madi would never walk, never crawl more than she was at that point, and she would live a shortened life! We were devastated! I handed the phone to Tom and went to the bathroom to vomit! It didn't seem real. The next few weeks were awful! We both cried ourselves to sleep every night! We held her with all our might and wanted to never let go! After the first stage of depression we both decided that she wasn't going to be the typical Type II and we would do everything in our power to make her walk and be normal. I could go on forever about all the struggles we have faced and all the lessons we have learned along the way but the best part is where we are today! Madi has been re classified a Type III!!!!!!!!!!!!!! She walks with a walker, sometimes without, and lives life to its fullest! She is just as stubborn as the day she was born and is so independent. She wants to do everything her sisters do and more! Madi is just Madi and really doesn't get the fact that she is handicapped! She wants to flip, jump, run, do backwalkovers, cartwheels, and everything else little girls do! We never tell her she can't, I just help her do them the Madi way! Madi is so happy and has such a fun outgoing personality. She is kind and sweet, funny and ornery! She lights up everyone around her every day! We are so blessed to have such a special girl and she is our inspiration every day! If everyone had a little Madi in them this world would be a better place!

Thursday, January 27, 2011

CollectForACure - Feb 1st - March 31st

So...Christmas is gone, the tree is put away and the shopping is over. How many gift cards do you have left laying around? Do they have a few bucks left on them? Do you have cards you will never use? Then donate them to us and help collect for a cure!

Every year, billions of dollars in gift cards go unused. That's right - BILLIONS! Why let that money go to waste when we have a real chance to cure SMA in our lifetime! Since 1984 - FSMA has funded over $50 million dollars in research. Are you ready to collect for a cure?

Starting Feb. 1st and going until the end of March - we are raising money to help Cure SMA. Donate gift cards you'll never use or even those with a few dollars left on them. We'll turn those cards into cash and donate the money to FSMA - Families of Spinal Muscular Atrophy. A portion of those funds will also be used in each state to help sponsor a family attending the annual FSMA Conference.

Monday, April 19, 2010

Mobiles for Madi - Totals are in!!!

Well...just about 3 months after our collection efforts were over - the totals are in! I had a few problems getting checks and tracking some of the shipments, but after sorting it all out - the total money raised comes out to $894.45 . The totals break down as follows: $753.50 collected for 450 cell phones turned in, $$140.95 collected for 274 printer cartridges turned in!

Thank you for everyone who helped collect cell phones & printer cartridges and thanks to those who helped us out with collection locations! I'm hoping we can do this again next year - so if you find yourself with cell phones or printer cartridges to donate I will take them until I have enough to ship in.

Tuesday, April 6, 2010

new facebook page

If you are on facebook we have a new fan page called miracle for madi that you can join. My cousin Jessica set it up. We posted some pictures too. So as for updates, not much new. Madi is continuing to surprise us. She is still taking many steps on her own. She loves her walker now and is finally beginning to ask for it so she can go places. I want her to have independence. I was so sad at Easter when all the kids were running around and playing and she had to stay with the adults. She can't do stairs, the walker isn't so good on grass and if I put her somewhere to play the other kids don't stay too long. I hate it! Don't get me wrong, I am so grateful for the miracles she has shown us already! But the disease is still eating at my heartstrings.
Another thought, why is it that handicapped kids have to go on a totally different bus than all the other kids? Can't they just put that dumb lift on a normal bus? I took Molly to Kindergarten roundup a few weeks ago. They take the kids on a bus ride and all I could think about was next year when they may have to leave Madi behind cuz they can't fit all the kids on the short bus. It just doesn't make sense.
On a positive note, we started with a new nursing agency. For the most part, I love it. Tonight was the first no show. There might have been some confusion in the schedule. Thank goodness Grandma Maureen was here! Our nurses have been great. The only problem is we have had like 8 nurses in one month so that they can fill Madi's shifts and train people. I am hoping by May we will be down to 2 or 3 nurses. It is hard for Madi to form a relationship and trust anyone when there are so many people taking care of her.
The annual SMA conference is coming up in June. They change the location every year and this year it is in California. We have gone the last two years since we found out about Madi. It is such a refreshing weekend for Tom and I. We get to see all these families like us, hear the latest research and just enjoy Madi. As of right now we can not afford to go because of airfare. I am really sad and am hoping something comes through. I am asking if you know of anyone who has airline miles they would like to donate to let me know. We would gladly use them for you! Well if you are on facebook please join our page. I will try to update often. Continue your prayers for Madi! Thanks!

Friday, February 5, 2010

Reality Check!

So I am sitting here having a pity party for myself and Madi tonight! I know my mom will probably call me and tell me to change the title of this post, but nope, it really does suck! I think I have actually been in more denial than I thought about this stupid disease! It gets you when you don't expect it. Madi has been doing so good that it has been easy to be in denial. Well over the last few days she has developed some respiratory infection. And as all of our fellow SMA families know, that is the worst part. So she started with a cough and now it has just developed into thick secretions that she can't cough out! I came home from cheer tonight and the nurse told me that she choked twice. It scares me to death! She has never choked on her secretions before. So now I am scared that this disease is progressing. I hate that I have to be in constant fear! Her oxygen is good and we did the cough assist. Thank Goodness the nurse and Aunt B somehow got her to swallow or whatever happened. I went up to her room, snatched her out of her crib and didn't want to put her back! I just cried and looked at her and can't imagine ever having a night without her! But reality hit me and I realize she really does have SMA and she isn't the exception to the studpid disease! So I got out the suction machine that we have never had to use and made sure I know how to use it and its ready to go in case we need it. We started her on a steroid that the pulmonologist gave us the last time we were there, "just in case", and it is supposed to thin the secretions, I think. She was as happy as a clam tonight and had no idea why I was hugging her and crying and just didn't want to put her down. Say your prayers that she is almost over this illness. Thanks to my friend Clint who set me at a little ease and he is my go to guy because UNFORTUNATELY his daughter has SMA too. Prayers for their Ella who has walking pneumonia right now. Prayers for little Stella who is such a fighter!

Wednesday, January 27, 2010

new video

Well we are staying busy as always! We have a few exciting things going on over the next month or two. Just on Monday night, I gave a speech to some physical therapy students at St. Ambrose about life with SMA and the therapy that we do. Our amazing therapists, Tara and Katie, had given a lecture on SMA earlier in the afternoon. I think it went well. Madi acted like a complete brat. She kept interrupting me to tell me she was hungry or thirsty. Then she was just whining and being bossy. I can't imagine what these young kids thought. Wow, college kids are young kids to me now! I feel so old! Anyway, this Friday we get to attend an appreciation dinner at our therapy center. It will be nice for the kids to play, especially Madi, with some other special needs kids. And for mommy and daddy to interact with some other special needs families. Then next weekend, we get a weekend of spoiling! We were selected to attend a weekend getaway called Up With Families. We get to spend the weekend at a hotel with lots of other special needs families. Everything is paid for. Each girls will be assigned a volunteer and they will do fun stuff all weekend. They may go bowling, get their nails done, go swimming. We get to eat hot meals, get massages, have a free family portrait taken. I can't wait. What a special opportunity for us! There are some amazing people that volunteer their time to make this happen, including my friend Keely. I think once you participate they ask that maybe you volunteer the next year. Sounds fair to me! I am really looking forward to it!
The weekend of the 13th we have a cheer competition in Iowa City. I love watching my girls cheer. I love coaching too but I am so proud of what an amazing tumbler Morgan is and how darn cute Molly is dancing and stunting out there. Molly truly loves it! Then we have 2 competitions the weekend of Feb. 27 & 28th. The 27th is at Pleasant Valley and then that night we leave to Chicago for a competition the next day. I sure hope I am feeling better by then. I have a horrible cough that could be pneumonia. My sister has pneumonia right now and I have been coughing for a few weeks. My dr. has no appointments today and I took the day off, how frustrating! I will probably go to a walk in clinic! I have to keep my distance from Madi which is hard because she is a mommy's girl! It has been a blessing having my mom here to help. She helps get the kids off to school in the morning. Morgan loves to have her pick her up from school so she doesn't have to ride the bus for an hr. She is an amazing laundry lady! Thanks mom! I love you!
Madi got new AFO's yesterday. Those are her braces on her feet that she wears. He also gave us new shoes. I really don't like them. They are very wide and clunky looking. She looks handicapped wearing them and I hate that. I'm sure more attention will go to her feet and she will look weird! I think I may be on the lookout for some other ones.
We have one tough decision to make over the next few weeks. I have been looking into switching nursing agencies. The one we are with now is not very consistent. We have one nurse that we really like but they won't let us have her all the time because she would get overtime. They haven't found us a nurse to fill our time. Madi was sick for a week straight and we didn't have one nurse that week. One nurse we had was just too rough on Madi and actually got mad one time when she pooped her diaper. That made me so mad. We are having trouble potty training but I'm sorry that is part of the job requirement! I have just had a lot of issues and have heard great things about this other company. So I am praying that I will somehow get a message about what the right thing is to do. Well that's it for now. Check the photo gallery for new pics. We also have a new youtube video that my marvelous niece Malorie made. It is called Madi's Miracle. Check it out!
One more thing, I have been talking to a new family that has just recently had their almost 3 year old diagnosed with SMA. She is the cutest little girl. She is a type III and still walks. Her family is grieving over the loss of dreams we all once had. So please keep them in your prayers. They also have a 7 month old little girl that was just tested yesterday and it will take a month to get the results. What a LONG wait! I feel like our families have a lot in common and I can't wait to meet them. Please pray that the Lord does not bless them with 2 SMA children. That must be even harder! Well have a great day!