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Reagan's first library card and iPad August 23, 2010
Today was a big day...Reagan got her very first library card and we picked up her iPad for school. Uncle Josh came on over and helped us get all set up with the iPad and select apps for it. She really enjoys drawing and playing music on it. For the most part we have a pretty relaxing week ahead of us, a trip to the zoo with friends and Reagan's healthcare meeting at school with all of the new teachers/aides/ principals and Open House as well.
Getting some support for the SMA Treatment Acceleration Act August 20, 2010 Thanks to MDA, this past Friday Reagan and I had the opportunity to meet with Senator Kohl's (Rebecca) and Senator Feingold's (Hope) legislative staff to discuss and ask for their support of the SMA Treatment Acceleration Act. Both offices were very receptive and we had a great dialogue. If you could now please take a moment and send an email to both senators about your personal story with SMA and ask for their support of the SMA TAA that would be great! Here is the link to send that email http://www.senate.gov/general/contact_information/senators_cfm.cfm?State=WI. Also, send the link to your family and friends asking them to do the same. It doesn’t have to be long, and if you can include a picture that would be great! We just need them to know how many of us they represent are affected by SMA and want them to support this legislation. They have yet to sign and support this bill. Until this past Friday neither office had even heard of SMA nor was aware of the importance of this bill for our children and families. Let’s strike while the iron is hot! Princess Luncheon, School Pics, Doc Appointments August 19, 2010
We are certainly keeping busy until school starts, trying to pack in lots of fun. Monday Reagan and Alexandra had a princess tea luncheon. I decorated the dining room and playroom all princessey. The girls enjoyed tea (lemonade) and royal sandwiches, then made and decorated crown, castle and glass slipper shaped cookies. They finished up their royal party decorating frames and taking pictures to put in them. Tuesday was Reagan's Kindergarten screening and school pictures in the morning and dinner with Uncle Josh and Nicole, we had a make your own pizza night! Wednesday was the dentist and PT, Thursday was Speech, Dr. Dan (5 yr immunizations included), an MDA Lock-up and then OT. Busy week and it's not even Friday!
SMA Education Day August 14, 2010
Reagan and I had a great weekend in Madison. Friday we started the day in the pool with Sue and after lunch made our way out to visit four different engines doing Fill the Boot to say hi and bring them some water. At least today was cloudy with a slight breeze. After our visits Reagan and I headed to Madison and had dinner with a bunch of SMA families at Denny's. We seriously took over half the place with all of us the wheelchairs and Easy Max strollers. The service was great and super nice just letting us hang out and chat. Dr. Schroth even came by and ate with us. Reagan ate dinner and played with Avery and Treyton...too funny. I had promised Reagan that when we got back to the hotel I'd take her swimming, so at 9:00 we went swimming. Saturday we were at SMA Education Day bright and early. It was great, they had childcare while I sat in the seminar so Reagan got to play with Treyton and Avery some more and she also got to see Jerika and Parker.
Fill the Boot for MDA August 9, 2010
We had a very busy, but fun morning. We started off the day at the Milwaukee IFA Union Hall for the Fill the Boot kick off press conference. Reagan was front and center with the Chief, Kevin, Dave and Michelle smiling away. Here is one of the news segments from the press conference http://www.cbs58.com/index.php?aid=13548. Reagan also had lots of fun sneaking up on Brian, he's the camera guy for CBS 58 that we've gotten to know over the past few years, and yelling "boo" or having him chase her. After the press conference we went to a park with Brian and Shari Dunn who interview Reagan and I for a profile piece they will air during the MDA Labor Day Telethon. Reagan did so well we had a special picnic lunch, a nap , and the watched a new Tinkerbell movie!
SMA Awareness Month...yes, it's August already
I can't believe it's August already. Just a few more weeks of summer and my lovebug will be in Kindergarten. Last week I took Reagan school supply shopping and she was very excited to pick out her folders and all that fun stuff. Joe asked me how I felt about Reagan going to school all day long? I'm so torn...I am excited for her and all of the fun she will have and friends she will make, I'm nervous about her eating lunch at school and letting someone else care for her, and I don't know what to do with myself while she's at school all day long? I went from teaching full-time and coaching two sports to staying at home running all around and caring for Reagan, it seems weird to think I will have 6 hours a day that's not filled?! Well, until that time even comes we have plenty of things on the calendar. Yesterday Reagan and I went around with Michelle from MDA to say hi to the Milwaukee Firefighters and wish them luck with their Fill-the Boot starting next Thursday. Monday is the Fill-the-boot press conference and then Reagan and I will do her Profile Interview. Wednesday is Zoo Class with Alexandra, and Thursday we are heading to Madison to check in with Dr. Schroth. Reagan still has her weekly therapies and Saturday piano lessons in addition to everything else!
Team Up! camp July 30, 2010
This week Reagan got to attend Team Up! camp at Raspberry Hill Farm in Sullivan. It is a camp for differently-abled kids and their siblings. The theme was Ancient Egypt, and Reagan was in the purple group (thanks Lois). There were speakers and musicians, they did crafts, danced, sang, and even went horseback riding. Reagan has been wanting to go horseback riding for a long time and was so excited to finally get the chance to. They wouldn't let me or Reagan's therapist get up on the horse with her, it had to be there person, who was very nice, but just not familiar with someone like Reagan who is so weak and can't even sit up on her own anymore. It was very difficult and I walk along side and held/supported Reagan for the entire ride, but at least she got to try it. The smile on her face was when she got down was well worth it!
What a great vacation July 24, 2010
We had a wonderful time with Mike, April and Gianna, what a great vacation. It was nice and lazy and relaxing, just what we needed. We relaxed outside, went swimming, I tried wind sailing, Reagan got to drive the boat, play ping pong and pool and Auntie April even hosted a Princess Tea Party for us girls. We were sad to leave, Reagan was even crying and wanted to stay another day. We did make a stop in Hershey, PA on our way home to break up the trip. We all made our very own chocolate bars went on a tour and then made our way over to the Hershey Hotel and gardens. It was beautiful and Reagan really enjoyed the butterfly garden. We made it home late Friday night and had the weekend to unpack, do laundry and get Reagan all ready for Team Up! camp this week.
July 17, 2010
Happy 35th birthday to the best Daddy and Hubby in the world. We love you very much Joe! xoxo, your girls
Meeting with a new renal doctor and our Superstar's photo shoot July 16, 2010
Yesterday we meet with a new renal doctor for a second opinion regarding all of Reagan's kidney stones and other renal issues. She went through all of Reagan's records and tests over the past year and explained to us that while Reagan's case appears to be perplexing and complex she will work with us to hopefully prevent Reagan from passing anymore kidney stones and get the calcuria and proteria under control. She switched Reagan's medications, is having us keep a voiding diary and also banished lemonade for the time being. Of all things the lemonade banishment was the most distressing to Reagan. She started all out crying right in front of the doctor, who hadn't realized that Reagan's oral intake is so small that taking away lemonade would be such a big deal to her. Later that afternoon Reagan had a photo shoot for a new national campaign that MDA is doing, the Muscle Walk, and they asked if Reagan would be on all of the promotional materials for it. A group from MDA, Kelly Lasky (a fantastic photographer) and Brian from CBS 58 to get footage of the shoot for a profile piece they are doing on Reagan for the MDA Labor Day Telethon. Both Joe and I were also part of the shoot and boy was it HOT outside. Reagan had fun and really hammed it up for the camera. Tomorrow we are leaving for our vacation out east to see Mike, April and Gianna. We are getting up at 3:00am so we can be on the road by 4:00 and get through Chicago before traffic!
A successful surgery July 7, 2010
Reagan just got out of surgery and did great! Now we have to get her tummy up and running and we should be home by the end of the week!
Time for another rod lengthening July 6, 2010
We are headed to Madison to have Reagan's next rod lengthening done, as well as a VCUG (attempt two) and another DXA scan. Reagan is a bit nervous, more so about having the IV placed than anything else. She is excited to see Dr. Schroth and watch the new movies we got her.
Summer fun and Fairy Princess Camp July 4, 2010
What an exciting summer it has been so far. I know it has been a long time since I have updated things, but I will be back at it on a regular basis. We have all been well and busy this summer. Joe spent a week in Prague and Dublin for work and Reagan has already had two zoo classes and best of all Fairy Princess Camp! She LOVED it. It was so wonderfully over the top with fairy princess delight and Reagan along with her two friends sent went with, Alexandra and Samantha just ate it up. We had a wonderful 4th of July weekend with Carrie, Eric, Evan and Bella, as well as Steven and my mom and dad. The only damper in our summer so far has been the unfortunate water in the basement issue which came to a head while Joe was in Prague and has resulted in us having to have some major excavation work done. I guess it could always be worse?!
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August 4, 2010
Happy
Birthday Daddy