Author: Rachel Alves

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 

It was a Long flight home and I seemed to be much more jet lag than I was when we got there! All my emotions set in realizing that we really were back to our life. All I was thinking of was all the work I am going to have to put in to making sure Audrey continues to progress. We started playing with Daddy in her room showing off her skills and to my surprise she was already playing so much better with HER toys! She was dropping balls into a toy ramp that her therapist didn’t use in VA, she was able to clean up all of those 4 balls into a plastic bag when asked, and she sat on step stool to play with a toy too! She even was sitting stabilized on her little toy motor bike as well! These are all things Audrey couldn’t do before our trip! As my husband beamed with joy, I thought “yes!” Generalization of toys CHECK! 😊

Can’t thank Dory (her OT) enough for all that she has done for our family. It’s not going to be easy but knowing she has retained those skills enough to continue at home leaves me with a lot of hope! #kickingcask back in California already!

Tuesday Audrey came down with a cold so Wednesday’s therapy was a bit modified. She still worked hard but wasn’t pushed as much because of her not feeling well. 

But we did get to meet one of VTCRI’s neuro motor early childhood learning specialists who does a lot of their speech assessments at the clinic. She came to watch Audrey. It was very hopeful to hear her say that Audrey was making lots of word approximations. She said that she wouldn’t doubt that she would be saying some words in the next year. Very reassuring to hear such positive news because language is such a slow process for most of our CASK kiddos. I know my baby has a lot to say, we just have to build up her muscles to do it! 

I will be given the home program today as well which the therapist will go over with me tomorrow at our last assessment. Still can’t believe our time here is over. Love all the connections we have made and feel the support from them all! We love you VTCRI! Very thankful for this amazing opportunity and hopeful that we will be back in a few years.  

Can’t wait to share the news stories once they have them up and running. Stay tuned on Audrey continuing to #kickcask 

Our wonderful therapist Dory!  We love you! 

The communications director from VTCRI (Virginia Tech Carilion Research Institute) contacted me on Monday asking if I would do an interview with the Roanoke Times! They wanted to hear our story and are interested in the fact that VTCRI is the only research team in the world that is exploring CASK’s role in neurological disorders.  We had quite a group in our hotel room but Audrey loved it! They got some of her therapy on video and she often stopped to pose for the nice camera lady 😊 Both camera crews did interviews, video and pictures! 

VTCRI also will be printing the story on their website and paper as well. As soon as we have the clips and articles, I will share the link. 

The reporter said he knows someone at Sacramento Bee too so he was going to see if they would run it as well! 

It is pretty cool to know that us being here is not only making a difference for Audrey but we are helping to raise awareness and getting the word out which could potentially help other CASK families. Such great exposure! 

Audrey continues to progress with therapy and is still so so close to crawling. Today she has started to pull her knees in along with her hands! One more full therapy session tomorrow followed by post assessment on Thursday. I can’t believe our time here is almost done. A very bittersweet feeling. I will miss her therapist so much but I know that everyone here has given me so many tools to use at home. 

I couldn’t of asked for a more productive and informative trip. I see Audrey becoming a little toddler for the first time which brings me so much joy. I will forever be her number one advocate. #kickingcask always! 
  

After our last weekend here in VA, I’m feeling anxious for this week of therapy. Starting to get a bit homesick and done with hotel living but I don’t want to leave in fear that Audrey’s progress won’t continue. I did some work with her this weekend and followed the therapist’s suggested “homework”. 

Audrey did okay but doesn’t respond to me the same way. She is not as compliant and doesn’t work as hard for me. As a mom, it is hard to put that “therapy” hat on when all you want to do is play, cuddle and laugh with your baby. 

I am so fortunate to have so many family and friends that support and love us. But it’s not easy. It’s not easy seeing them get to be parents and watch their children thrive. It’s not easy knowing that everything is going to be hard work for my baby.  

Seeing your child struggle with anything is so hard as a parent, let alone seeing them struggle with everyday tasks.  

I know I am the luckiest mom to have this beautiful sweet girl and I can’t imagine my life without her. But I do wish for her to have a childhood where she gets to just be a child. 

This is a battle I know I will always fight. I have been told by other special needs moms that each year you accept a little more, your reality adjusts. So that is what I will focus on.                                                 On to week 3 of #kickingcask 👊🏻

Week 2 wrap up: Audrey made huge strides towards crawling this week! She is so very close and I think in a few days she will have it. Her therapist has really broken down the steps of crawling for her which I think is key with Audrey’s motor planning and processing. Moving left arm, right arm, then knee, other knee is what she has been doing with her.  

We have 5 full therapy days followed by a post assessment before we head home next Friday. I can’t believe it’s already been 2 weeks here. (On Saturday). So very fortunate for this opportunity. It feels good to know that Audrey has made progress and knowing I have more tools to take home in order to further that progress is worth everything. 

The amount of new textures, sounds and toys has been endless here. It’s amazing to see how well she has adapted to it all.

New things Audrey is doing:

*Transitioning to all 4s and starting to rock in the crawl position

*Transitioning to non dominant side to sit up 

*Signing “more” much more consistently 

*Putting 2 hands down to pull up into tall knees 

*Using her right hand as well as her left which is something we have been working on for a year since she favors her left. 

*Putting toys “in” appropriately instead of just taking “out” 

*Tolerated lots of toys with sounds 

New textures: 

*Bean bin play

*Shaving cream play 

*Playdough play 

*Moon sand play 

*Prickly balls in bean bin and rubber animals 

*Touching soft pop up animal in farm book

*Tried M&Ms 

We are continuing to have inconsistent sleep but I think the more she learns, the better it will get. It may be something we struggle with for quite some time though. 

Can’t wait to see what she does during week 3! 

Both Saturday and Sunday night Audrey was more restless going to sleep than she had been during the week… I can’t help but think this is directly correlated to her therapy. Her body didn’t work as hard on the weekend but first day back to the grind and she slept better last night. This is good to know and see but also means I have to have her working all the time, which isn’t realistic. Finding a balance is something I will have to work on.  It does amaze me though that as hard as she works, she still only takes her short 50 min cat nap each day! Her little body works differently than most. 

Lots of hard work today (week 2, day 2) Crawling practice ended with lots of tears. That was very hard to hear and see. But just like everyone else, she has to learn to be mad/frustrated when something is hard and be able to move on! 

A very hard thing for a mom to accept though but I know it’s for the best. She’s becoming so much more independent and even ate cherrios off of a fork today for the first time!! 

She is so much more engaged in the toys shes play with and is actually playing appropriately with them! Putting her pacifier in her mouth is something they have been doing to keep her from mouthing toys and it is allowing her to focus on playing.  Such a win!

Every day I’m so proud of the work she puts in. My little fighter ❤

Monday-Friday while here in VA, Audrey is receiving almost a YEARS worth of therapy in 3 weeks compared to what we get at home. I wish that wasn’t the case but it is. One of the things this research is trying to prove is that these kiddos need more… more intensive therapy and more time to develop the motor planning piece of it all.

My priority once we get back home is to try and seek out as much therapy and exposure as possible for Audrey but my fear is that it will all be up to me to keep the momentum going. 

The good news is that I know what she is capable of! I always believed in her but seeing it develop so quickly is magical.  

We had a fun weekend with a science museum visit, zoo adventures and some down time but bring it on week number 2! 

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! 

Day 1 of therapy Assessment day: Our occupational therapist working with Audrey is amazing! Kind, patient and so good with her! Today was a 3 hour assessment. Audrey did really well. Fussy at times but powered through! We discussed concerns and goals at the end. Can’t wait for tomorrow! 

Day 2: lots of working! sensory beads and bean bucket she loved. They used a small step stool for tons of activities including her getting herself dressed which was amazing to see some independence. I learned so much today! We need to Isolate Audrey’s muscle that we want her to use because what’s happening is her whole body “fires” (this means she extends her muscles) and its too much for her, causing them not to work properly. With CASK diagnosis, we know that motor planning is very delayed and therefore we have to break down each and every step of a skill. We don’t go from crawling to walking with our kiddos! I have to train the way I think as a parent as well . Im learning so much from the wonderful therapists and they even said it’s okay to be just “mom.” This is something I struggle with on the daily so to hear it from them was huge!

Day 3: SO much progress is happening! Today Audrey dropped the ball in a toy 3 times, reached and planted her hands then pushed up to stand with little support and has even started to sign “more” when prompted! Makes me want to never leave!  

We were taken to their research facility today to do some imaging and met the main researcher. Such an amazing experience 

Due to lack of federal funding, Audrey is only the 3rd CASK child to receive this treatment so far… it’s ground breaking research and we are so fortunate to have this opportunity. Being here gives me so much hope for Audrey’s future but is also so mind boggling  to know that no one else is studying this rare disorder. Dr. Konark is very passionate about the work he does and says spreading the word is the best thing we can do. 

Please go to http://www.caskmutation.org for more information on the research that is being done and if you are able, please donate! 

​​​​​