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!