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.