Author: Rachel Alves

I know we have been so fortunate to not have a lot of medical challenges so far with Audrey’s diagnosis but this no sleep thing is rough! I long for the day that I can say “I can’t wait for bedtime!” Hearing others say these words makes me very envious and sometimes even angry because to me, bedtime is torture and possibly means that I will be up with her in 1 hour then in two hours then possibly for the rest of the night. Every parent knows how awful sleep deprivation can be; That afternoon cup of coffee necessary to get you through the day.  

For my husband and I, this is a nightly battle. Audrey hasn’t slept through the night in over a year. Her constant waking, restlessness and muscle spasms are so hard to manage. Lack of sleep is a nasty thing and makes you act very irrational sometimes. We have tried it all: melatonin, weighted blankets, soft music, rocking, massages before bed… One of my many hopes on this journey is to learn techniques to help her stay asleep longer, more peacefully and teach her to be able to self soothe better (this is a skill she does not have)

Being tired is awful but seeing your little one struggle to sleep is even worse.  

Rest up baby girl, mommy and daddy want to see you thrive. ❤

Hi all! Well, we survived our first big trip and boy did Audrey kick some major CASK booty!  She did amazing. After having a very rough (but pretty typical) night of limited sleep, we hit the road to the airport at 4:30am. We flew from Sacramento, CA to Chicago for a short layover, then Chicago to Roanoke, VA.  What a day! As exhausted as we all are, it was such a smooth and successful trip.  Audrey was entertained by Mickey Mouse clubhouse episodes and some snacks.  But mostly she won everyone over with her happy demeanor and adorable smile!  SHE WAS A CHAMP 

I feel especially lucky to call this sweet girl my own today.  She brings sunshine wherever she goes.

We start her therapy Monday morning so stay tuned! #kickingcask#virginiababy 

On December 3 of 2015, our lives changed forever.  I received a life changing phone call from our genetics doctor… our biggest fear had just become our reality.  We learned that day that our precious 10 month old baby has a very rare genetic disorder.  We were told that she may never speak, never walk and may have severe intellectual disabilities.  It was a shocking phone call to say the least.  Once the immediate shock wore off, I did what anyone these days would do, I searched the web.  Boy was that a big mistake!  The horrible stories, statistics and pictures I was seeing made me feel so helpless and hopeless.

Needless to say, it took me and my husband awhile to grasp the concept.  In fact, one year later we are still working on this.

After finding some other families dealing with the same disorder, I became Audrey’s number one advocate.

She recieves 5 therapies weekly.  Occupational therapy, speech therapy, physical therapy, child development intervention and feeding therapy.  Although it has been a very hard year, Audrey slowly but surely progresses.

We have an amazing opportunity happening next week which is why I started this blog. My mom, Audrey and I will be going to participate in a study being done at Virginia Tech for 3 weeks.  She will receive intense therapy there for 4 hours each day.  We are so excited and fortunate to be able to take part in this   I hope to blog our trip as we go!