1 week down, 2 more to go!

This first week has exceeded my expectations beyond belief. Audrey has gained more control of her body. She’s eating better and even sleeping a little better! Amazing what one week of intense therapy has done! 
The thing that touches me the most about being here though is how much hope they have for Audrey. I am so excited to share what we have learned with her team back home and have already ordered a few of the things they have used with her! 

Although there is no magic remedy to get Audrey sleeping better, I have learned that we have to remember to separate sleep and calm with her which is an unnatural way of thinking. She has a hard time calming all of her body parts, so for now, that is our focus. The hope is that as she gains more motor control, calm body will translate into more restful sleep.

I also was told that it’s good we sometimes do see her sleep soundly. That means she’s capable of it. We just have to train her muscles to not always be going and this has already improved this week!  

We have rented a car for the weekend and are going to explore Roanoke, VA.  

Happy Friday everyone! 

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Author: Rachel Alves

Hi there! I am a special needs mom to a beautiful, sweet girl. Audrey has a mutation on her CASK Gene. This is a rare genetic disorder that effects her globally. It has caused a seizure disorder as well as gross motor, fine motor and speech delays. A Microcephaly diagnosis comes along with it as well. Our last 8 years have been filled with therapy, learning about our daughter's disorder and also learning to cope while finding joy. Thank you for taking the time to read about our journey. For more information on the CASK Gene, please visit my Instagram @alvesmomkickingCASK.

8 thoughts on “1 week down, 2 more to go!”

  5. This is such great news. Can you tell us more about where you are? What therapy center is this? We are 7+ years into our journey & you will be amazed at what she will do. Patience is key.

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    1. We are staying in Roanoke Virginia and she is receiving the therapy through Virginia Tech Carilion Research institute. Dr.Konark works with a woman named Stephanie De Luca here… she is head of the neuro motor department for this clinic. They are all working together to get more federal funding to send more CASK families out so they can learn more and prove that this intense therapy does wonders for our kiddos!

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