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!

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!

Last week for phones!!!

It's finally here - we're pushing into our last week of cell phone collection! Donation boxes are still out and we're still collecting phones. If you received a new phone for christmas - we'd love to have your old one. Drop off your old cell phone at any of our drop locations - or just leave a comment and we'll find a way to connect.

Madi makes the front page!

Yesterday Megan and Madi had the opportunity to speak to Royal Neigbhors, an organization that helped fund the Standing Dani. Megan did an awesome job speaking in front of a large crowd - and madi won them over with her smile! Read all about it at the QC Times.

Special Thanks to the Ecology Club at Martinez Middle School!

I just wanted to send a special thanks out to the Ecology Club at Martinez middle school in Romeoville, IL. As part of America Recyles Day on November 15th, the ecology club held an awareness & recyling event at Martinez middle school. Madi's aunt Holly, who lives in Romeoville, stopped by and picked up the printer cartridges yesterday. The ecology club donated 175 printer cartridges collected during America Recycles day. Thanks go out to all the members of the club as well as Carolyn Morelos who helped coordinate the collection.

America Recycles Day - Sat, Nov. 15th

This Saturday is America Recycles Day - Coordinated by www.americarecyclesday.org Check out the website to find local recycling efforts. I sent a few emails to those nearby asking if they received any cell phones or printer cartridges that I'd be happy to pick them up for our MobilesForMadi.com collection efforts.

Sick

Hey everyone, say a prayer that Madi can get over this one quickly. Sunday she started coughing and by late Sunday evening she had a 102 fever and a really bad cough. I stayed home with her today and took her to the doctor. Her white blood cell counts were at 11,000. He said this is right at the beginning of being high. He thinks she may have walking pneumonia. As for now we are just to watch her. Keep giving her the decongestant and fever/pain relief for her temp. She was in quite a good mood today and the cough didn't seem too bad. The cough got worse as the night progressed. She is sleeping now with no fever. If she gets worse the Dr. will check her counts again and then maybe start her on a steroid. He doesn't like to start her on it yet because the steroid breaks down the immune system and she is susceptible to more illnesses. So we will pray she can fight it. We used her couch assist and checked her oxygen. Her oxygen was actually at 100% surprisingly. She was a beast and very crabby for our nurse tonight.
On another note, I got to watch Oprah today. She had Ellen DeGeneres on and Ellen was apparently on a quest to get on the cover of O magazine and she kept at it until Oprah answered her and she will be on the cover next week. So I thought why not try that tactic with Ellen. I emailed the Ellen show and told them about our mobilesformadi fundraiser and asked Ellen for help. I suggested she collect them from audience members or maybe all the people she knew. I said she could help us reach our goal of 10,000 phones. I also said that she inspired me not to give up and that she would continue to hear from me. Hee hee! I plan to write every other day, call any number I can find for her studio, and hopefully video my efforts and youtube them. I am going to video Madi saying something too. What the heck. Ya never know until you try. I tried Oprah last year and she didn't respond. I plan on being a little more forceful this time.
Prayers to the Turnbull family as they are fighting some sickness at their house too. Please keep our friend Sergio in your prayers as he is fighing leukemia for the second time. We love you Serg!