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Pump, Therapy and Getting the word out!

Today marked the first day of turning Annie's pump down, we talk about our plans every day, and calculate how long we think it will take to turn her pump off! I am sharing this photo of our visit today(with permission from our provider of course!), super cool Annie is showing her pump with the neat machine that reads it and gives it instructions. I cannot believe we will be taking this out and she will live free of muscle relaxers for the first time since she was 2 years old. I am still grasping the depth of just how much is going to be better for this love of my life. She will no longer need regular pump refills. She will no longer wear her sneakers and shoes out in weeks. She will be able to wear flip flops and dress shoes if she chooses. She will have her whole life ahead of her just waiting to find more.

Annie and I at therapy, they even put up a flyer for us! The team at Sacred Heart as been working with Annie since we moved here in 2016. They have be patient with her through all her phases- even when she would refuse to participate...oh what a trouble maker she was.

We made some new donation jars! Annie helped with the glitter and glue, she had so much fun making them and is understanding what it means to be thankful as we go through this process.

Just a reminder, 10 days left to get your T-shirts, we have some big events coming up in the near future and not sure if we will run another T-shirt sale in time for the next big event.

Thank you to everyone who has purchased a t-shirt, bracelet, made donations, shared our page, we truly appreciate all of you. My husband and I will be making contributions toward Annies account and increasing the bar also, keep on the lookout for us to reach our goal :-). PS if you have a business and would like to place a donation jar or help in any other way please let me know, you can send me an email to .

On another note, Annie has been doing significantly better in school this year, I am so proud of her! I will get a video of her one night practicing her spelling and sight words! Dr. Parks web page shares info about how SDR has been proven to increase visual recognition, although unknown how this is actually caused. I hope to see Annie continue to improve in these areas post op. Annie and I have been reading a lot of Shel Silverstein lately, I love his creativity in his writing and it is helping her with reading comprehension. We were talking about this poem the other night-

Listen to the MUSTN'TS, child,

      Listen to the DON'TS

      Listen to the SHOULDN'TS


      Listen to the NEVER HAVES

Then listen close to me-

      Anything can happen, child,


~Shel Silverstein

I never want her to listen to anyone that tries to tell her she cannot accomplish something or should settle for something less. Many times we have been told that she could not do something and we should just accept life the way it is and if I even listened one time she may not be walking today, she may not be able to climb the stairs onto the bus or play outside with her friends. I thought after reading this to her tonight, wow, we should all take a page out of his book, prove the naysayers wrong....because, in the end, anything can happen!

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