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!