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