Cell Phone Collection Drive!

Donate Cell Phones & printer cartridges Nov. 1st - Jan. 15th!

We're getting ready to launch a cell phone collection drive November 1st to January 15th. We'll have drop off points in both Illinois and Iowa. We'll be mostly be collecting cell phones and inkjet cartridges but we can also accept ipods, some digital cameras, pda's and laptops.

Stay Tuned for deatils!!!

Thanks

Well I was lucky enough to go out with some friends tonight and I was so happy. Our new nurse came over and Madi gave her quite a hard time. If I'm around Madi wants nothing to do with her. She told her, "I want to cook dinner with mommy!" She is funny! Getting anything done one handed isn't easy. I feel very comfortable leaving Madi with our nurse already! It is such a joy to have help, even if Madi is reluctant!
One big stressor in my day today was that tomorrow our sitter has a vacation day and for a few weeks I had been planning on a new nurse coming to the house to train and then be here tomorrow. Well, I kept waiting! I called several times to remind them that I needed someone tomorrow. Well today came and she still didn't have anyone! I was very upset and frustrated! The nursing scheduler didn't even call me I had to call them. They finally found someone but I'm not too happy that we have never met the person before. Thank goodness our friend Todd will be home all afternoon too. Madi loves Todd!I am really nervous that this person hasn't met Madi or been to our house before! I am extremely frustrated that these people don't put themselves in my shoes! I am so grateful for the help, but not when it causing me so much stress! Hopefully I can post tomorrow that all was wonderful!
I can't wait for summer to be here so I can be home with my girls! I feel guilty leaving every day! I constantly think I should be spending every minute I get with Madi and pray that God keeps giving me one more day! How do I spread my time equally when I have a handicapped child? I haven't figured that out yet! It is coming down to the end of the school year and stress is taking over! I am very emotional and will probably cry every day now until it is over! I have such a controversy in my conscience! Should I give up all we have and spend time with my beautiful girls or continue life as normal and "pretend" Madi isn't so fragile and give them everything I want to! I just don't know! I do know that I need to continue to pray on it and hopefully God will send me some sort of message to help me figure it all out!
The benefit is this weekend! If you don't know about it you can check out madipokerrun.com I am so lucky to have so many wonderful people in my life! I can't wait to see all of you, those I know, and those I don't. Thanks for all your continued prayers and support! My family is lucky to have you in our lives!

Busy Spring

Well you know things are going well when I don't post for awhile. We have had a very busy spring so far! May is keeping us on our toes! We are so excited to have begun nursing services for Madison. We have now qualified to receive some respite and nursing hours every week. We just started last week, so we are still trying to figure out the schedule. We started with one nurse, who is fabulous but we will be training a few so that we have back ups. The nurse comes to the house and helps Madi with therapy types of things. She helps Madi with the parrallel bars, does foot exercises, does some respiratory therapy type of stuff with her, gives her a bath, and plays. This is such a huge help for me! Especially on baseball nights. When Morgan plays baseball there is no where for Madi to play. She still doesn't like to stay in her wheelchair for extended periods of time, she hasn't quite figured out the standing dani, and she wants to be held all the time. It is frustrating. I am hoping that having a nurse there will help with figuring out the standing dani. We use it everyday to go down the driveway and get the mail. She doesn't know how to steer yet and is quite dangerous in that thing. I hope she learns. It is such a great piece of equipment that will help her be able to play more and be more independent. She just gets frustrated so quickly. She is such a little independent 3 yr old. She doesn't want help with anything and so she gets mad when I try to help her steer or stop her from running me over.
She still loves school. Her teachers are absolutely fabulous! She is talking up a storm, can count to 12 and sings her ABC'S all the time! She is so funny. Okay, funny story! I had all the girls in bed and it was getting late, like 9:00. I was reading Molly a story in her room and Madi has been quiet and I thought she was sleeping. All of the sudden we hear her yell, "Molly McButterbutt!" We all started cracking up! The babysitter's husband calls Molly that! Thanks Tim! Then she continued for about 10 minutes because we were all laughing at her. She loves a good laugh! She is so silly these days! I thank God every day that I see her smile! I will try and post some recent pictures late on tonight! Please keep some of our SMA friends in your prayers for I know at least one who has become an angel this week!
We are really looking forward to attending the annual SMA conference in Ohio this summer. It gives us a chance to feel "normal" for a few days. I can't wait to let my emotions go this year. Last year it was all so new and shocking to us. I hope I can be a little bit of a shoulder for another family to lean on this year. I'm really wanting to get Madi involved in something other than therapy. If anyone has any ideas I would love to hear them. I feel bad, Molly and Morgan have baseball and tumbling, and Madi just goes to therapy 2-3 times a week. I have been a little more emotional lately when I'm out in public and people stare. I guess because Madi is growing so much and looking older people stare more. I find myself staring at all normal 2 and 3 year olds lately and think about how unfair it is. But God would not have given me a cross to bear if he didn't think we could handle it. SMA is our cross. I have met so many wonderful people and been filled with the kindness from lots of family and friends. Thanks to all of you who actually read this and listen to me complaining. Sometimes it is my only outlet because I don't want to call and complain to people. I hope to see all of you at Madi's benefit on May 23rd. It begins at Overtime and is a pokerrun. It will be fun!

Do you believe in miracles?

Well I sure do! Today has been a miraculous day everywhere! The day began with the best news we, as parents of an SMA child, could hear! Obama overturned the Bush ban on embryonic stem cell research! This means that science can move ahead to what other countries are already doing! This may mean a cure for SMA! I've said it before, I can picture the party in my head! More big news! Madi got her Standing Dani! We have been very anxious for her to try it! We put her in it for a short time tonight. She liked it but it needs adjustments to fit her. I am taking it to our equipment man, Brian, tomorrow to get her fitted! She drove it for a little bit in the garage but the fit was beginning to bother her. We only got one picture but I will get more when it fits her better. The real MIRACLE! Are you ready? Well, I was sitting on the couch and Madi was standing in front of me, like she usually does, holding on to me or the couch. She wanted to be really fancy and decided to clap her hands. She stood there for quite some time swinging and clapping her hands, completely standing on her own! Then she looked like any other kid and she took a step without holding on to anything! I swear! She then lost her balance but she did it! Amazing! I was crying! We had treadmill therapy tonight and maybe that helped her! Then I started to call people to tell them and she stood there talking to Kim and I counted slowly to 20 and she stood there the entire time, free standing!!!! I still can't believe how stubborn and strong this little girl is! According to scientists and genetics she should be a type one SMA, but she is obviously beating all odds! What a day! Keep posted for more pics!

Standing Dani

You should know that if I don't post all is going well and we are just leading our very busy lives! This is a picture of Madi driving her red car her Uncle Bob and Uncle Tommy picked out for her birthday. Daddy made it Madi accessible by adding PVC piping all around to form somewhat of a cage so she can't fall out of it. She loves to drive it around the house but needs constant help cuz she runs into stuff and then whines! On another note, Big news though! We are going to pick up our standing dani this coming weekend! I am sooo excited to see how Madison will like it! She doesn't really like to sit at all anymore. She wants to stand all the time! It is a little frustrating because no matter how many times she falls and gets hurt she still wants to stand! I am very blessed to have an SMA daughter who is so strong so I am thankful for her stubbornness! I just worry that she doesn't know her threshold and will really hurt herself one of these times! She is so cute though everytime she does fall she will whine a little and say, "I need ice pack" We laugh at her and then give her one which usually ends up in her mouth. She is pretty tricky these days and thinks she is really fancy! When she is strong, usually in the mornings or after naps she even walks around the house holding on to the walls or kitchen cabinets! I am so truly blessed and feel sad for all of our SMA friends who aren't this strong! Madi is truly a miracle! Her ankles really roll in when she isn't using her AFO braces but our orthopedic doctor said we didn't need to worry about it! We tried the walker that she uses at school, at home, but it didn't really work that well. I'm kind of frustrated with equipment right now so I hope the Standing Dani will be something she really likes. I'm not sure if we are going to practice "driving" it in the garage or outside. I will get a picture up as soon as we can!
We managed to stay away from most sicknesses until this last few weeks. All of us had strep and then we got the respiratory flu. I think Madi is just getting rid of her wet cough. I seemed to have gotten the worst of it this past weekend and have a horrendous cough and am trying to stay away from Madi as much as possible. That is a very hard thing to do when I don't see her all day and then she really wants me at bed time. Thanks goodness spring is almost here. I really want to air out the house!
We tried to send Madi to a new daycare but it didn't work out! We are really looking for a place where she can be independent and use some of her equipment. We want her to be stimulated and with peers. She is loving school and really seems to be soaring since starting in January! We started her at a daycare that is for special needs children and integrated with regular kids, but we never really had the same comfort level as we did with our sitter. We ended up pulling her out after one week and she is back with our same sitter we have had since they were all babies. The first day I called to check on her the phone line was busy for over an hour. The next day Tom picked her up and she was outside in her wheelchair and her coat wasn't zipped, the third day I picked her up and her shoes were on the wrong feet and her AFO's weren't on correctly, and then the final kicker was when Tom stopped in to check on her he saw an outlet in the middle of the play area with no outlet cover. Not just a plug but no plate, exposed wires! They said that the person who waxed the floor must have forgot to put it back on! I'm sorry in a daycare you don't forget things like that! He took her and left. It was a hard decision because the people there really do care and were really nice but we just didn't feel it was the best place for Madi! So we may look into one other place for next year, but for the rest of the school year we will just keep her at our babysitter's. She loves it there and is a little spoiled!
The other two girls are doing great and as always are fabulous big sisters! They love to give Madi what she wants and Morgan loves to carry her around. Mollly has taught Madi to sing Happy Birthday with the cha cha cha at the end. It is pretty funny! With the stress that everyday life brings, especially with a handicapped child, I do remember how blessed and lucky we are to have Madi as perfect as she is. Morgan and Molly are truly good girls but test my every nerve at the end of a long day! Please keep in your prayers all the other SMA kiddos who aren't as strong as Madi and pray for a cure in the near near future! I'm already envisioning the party and celebration that will occur when that miracle happens. I don't say if, I say when, because I truly know in my heart, it will!

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