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

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!