Summer was HARD.
Summer was full of ups and downs. We had some fun with family mixed with some rough days at home.
A consistent routine is a game changer to Audrey’s happiness. My self care pretty much goes out the window when she is on a long break. I’m working on this all the time and realize it’s an unhealthy cycle but we made it through and so we are pressing on! I say we survived but didn’t thrive😆
Audrey built her strength with a few weeks of intensive PT sessions at a clinic in Sacramento and her and I had a lot of time together.
We are now officially into the first full week of school as a second grader. Transitions are rough and due to an extreme staffing shortage, it’s been a bit hectic. I’m hopeful that with some new team members added we will get back into a good flow by the end of the month!
Some exciting things coming this fall:
⁃ I am attending my first in person summit: the global genes rare advocacy patient summit next month. I’m getting out of my comfort zone and going to it alone in San Diego California. I’m thrilled and excited to learn and network! It will be 2.5 days filled with trainings and speakers with so much insight into this rare diagnosis world!
⁃ I’m also getting to do some fun activities with friends and family so I’m very much looking forward to September.
⁃ Audrey will continue horse therapy after school once a week. I’m excited for her but hoping she has the stamina to work hard after a full day of school. We will adjust as needed.
⁃ Feeding assessments for feeding therapy and neurology check ups will also happen this month.
⁃ I have big plans of working on advocating for our city to be more inclusive. It may take time but we will get there!
⁃ September 30th is Microcephaly awareness day! Check out http://www.caskgene.org for info on why our CASK warriors and loved ones rock the yellow on this special day!
We will continue #KickingCASK as we make our way into the last half of 2022
Kicking CASK 
Love these updates! You all are amazing!
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