Back at it 

It has been two full weeks since we landed back in California. Real life has resumed and although being overwhelmed gets the best of me quite often, these last two weeks have been pretty positive. 

Since we have been back, our CASK Carilion Research article has circulated to another paper. The Richmond Times in Virginia! I have even had a few special needs moms reach out to me about it. So happy my story can bring comfort to other moms out there struggling with similar issues.  

My husband started a new job with a new schedule this week so it’s just myself and Audrey until 7:30 each night. It’s been exhausting but I have tried to keep a good schedule going to get us through each day. Between our therapy schedule and the additional classes I have Audrey in, we have stayed pretty busy! 

New things Audrey has done this week: 

*Audrey went to story time in our neighborhood and squealed with excitement for the whole 30 minutes pretty much!  

*She tried a Hershey kiss for the first time (she was a fan) and also ate yogurt and applesauce successfully this week which before she hated! 

*Continues to play with new toys in all therapy sessions without hesitation 

*Continues to sign for “more” consistently and working on “eat” and “all done” 

*Crawling is the same she is SO very close! 

*New show obsession “paw patrol” (she loves dogs!) nice switch up from Mickey Mouse clubhouse 

*Sleep has not improved but I don’t even expect it to anymore! 

I am getting back into the swing of things and am constantly trying to maximize learn time for Audrey. We are using a big diaper box for “high knees” practice. It is the perfect makeshift bench for her height! I have reached out to a few people in regards to finding more therapy hours for Audrey. Not sure when or how this will happen but I will keep fighting! 

Some days I read articles, see pictures or videos of typical kids, hear my friends daily activities and feel so very sad for what we may never get to see Audrey experience. But I know that she is on her own journey and although I will never understand quite why, I am learning to accept our reality . We truly are so lucky to have such an amazingly hard working, happy, beautiful baby girl who every day puts a smile on my face. #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