What a month! 

September has been a busy month! Since we have been back from San Mateo, a few major things have happened: 

*We were chosen as the “featured family/story” for Childrens therapy center’s big auction dinner! We were interviewed and a slide show with video clips and pictures will be played at the dinner this Friday! Matt and I get to attend as well. 

*Audrey is almost standing! She can stand against something like a table for up to almost a minute without needing my help! 

*I spoke for the 2nd year at Sac City College in a child development class that focuses on children with exceptional needs. I got great feedback and love advocating for Audrey any chance I get! 

*we had a big assessment through our insurance that gave us tons of new information on resources and potential therapies for Audrey. We will know more about this once she is referred closer to her 3rd birthday. We met with some really great specialists and a social worker that cleared up a lot of questions we were having about the system with medi-cal along with other options our future may hold. 

*sleep is the thing we are still struggling with the most. Working with specialists constantly to try to make it more manageable 

*I reached out to a STEPS program done at Sac State that does assisted treadmill training. A spot opened up and we got to start today. It will be more therapy 2x a week that I get to take her to. We were also recommended for a research PT clinic starting next month for 5 consecutive Tuesday’s that Audrey gets to be a part of as well. The director we met today thought she would be an amazing candidate.  

*Coming up this October, I will have Audrey’s transition meeting with the school district to talk about placement options available to us. Audrey also has an ABR sedation scheduled to figure out what’s really going on with her hearing… so on October 5th be thinking positive thoughts for us.  

All of this can be so overwhelming some days but knowledge is power and I strive to be the best advocate I can for my little girl. This road isn’t easy but each day we all get a little bit stronger. #kickingcask 

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. View all posts by Rachel Alves