Well we are staying busy as always! We have a few exciting things going on over the next month or two. Just on Monday night, I gave a speech to some physical therapy students at St. Ambrose about life with SMA and the therapy that we do. Our amazing therapists, Tara and Katie, had given a lecture on SMA earlier in the afternoon. I think it went well. Madi acted like a complete brat. She kept interrupting me to tell me she was hungry or thirsty. Then she was just whining and being bossy. I can't imagine what these young kids thought. Wow, college kids are young kids to me now! I feel so old! Anyway, this Friday we get to attend an appreciation dinner at our therapy center. It will be nice for the kids to play, especially Madi, with some other special needs kids. And for mommy and daddy to interact with some other special needs families. Then next weekend, we get a weekend of spoiling! We were selected to attend a weekend getaway called Up With Families. We get to spend the weekend at a hotel with lots of other special needs families. Everything is paid for. Each girls will be assigned a volunteer and they will do fun stuff all weekend. They may go bowling, get their nails done, go swimming. We get to eat hot meals, get massages, have a free family portrait taken. I can't wait. What a special opportunity for us! There are some amazing people that volunteer their time to make this happen, including my friend Keely. I think once you participate they ask that maybe you volunteer the next year. Sounds fair to me! I am really looking forward to it!
The weekend of the 13th we have a cheer competition in Iowa City. I love watching my girls cheer. I love coaching too but I am so proud of what an amazing tumbler Morgan is and how darn cute Molly is dancing and stunting out there. Molly truly loves it! Then we have 2 competitions the weekend of Feb. 27 & 28th. The 27th is at Pleasant Valley and then that night we leave to Chicago for a competition the next day. I sure hope I am feeling better by then. I have a horrible cough that could be pneumonia. My sister has pneumonia right now and I have been coughing for a few weeks. My dr. has no appointments today and I took the day off, how frustrating! I will probably go to a walk in clinic! I have to keep my distance from Madi which is hard because she is a mommy's girl! It has been a blessing having my mom here to help. She helps get the kids off to school in the morning. Morgan loves to have her pick her up from school so she doesn't have to ride the bus for an hr. She is an amazing laundry lady! Thanks mom! I love you!
Madi got new AFO's yesterday. Those are her braces on her feet that she wears. He also gave us new shoes. I really don't like them. They are very wide and clunky looking. She looks handicapped wearing them and I hate that. I'm sure more attention will go to her feet and she will look weird! I think I may be on the lookout for some other ones.
We have one tough decision to make over the next few weeks. I have been looking into switching nursing agencies. The one we are with now is not very consistent. We have one nurse that we really like but they won't let us have her all the time because she would get overtime. They haven't found us a nurse to fill our time. Madi was sick for a week straight and we didn't have one nurse that week. One nurse we had was just too rough on Madi and actually got mad one time when she pooped her diaper. That made me so mad. We are having trouble potty training but I'm sorry that is part of the job requirement! I have just had a lot of issues and have heard great things about this other company. So I am praying that I will somehow get a message about what the right thing is to do. Well that's it for now. Check the photo gallery for new pics. We also have a new youtube video that my marvelous niece Malorie made. It is called Madi's Miracle. Check it out!
One more thing, I have been talking to a new family that has just recently had their almost 3 year old diagnosed with SMA. She is the cutest little girl. She is a type III and still walks. Her family is grieving over the loss of dreams we all once had. So please keep them in your prayers. They also have a 7 month old little girl that was just tested yesterday and it will take a month to get the results. What a LONG wait! I feel like our families have a lot in common and I can't wait to meet them. Please pray that the Lord does not bless them with 2 SMA children. That must be even harder! Well have a great day!
