Sarah’s Story

Site created on April 21, 2023

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Newest Update

Journal entry by Sarah McFarlen

Kylo Asher had his 10 month birthday a couple weeks ago!
He continues to be our mover and is crawling and starting to cruise along things that are the right height for him. He usually gets stuck in standing and just starts yelling…then mom helps him transition down and he gets real mad 🤣 He yells when he sees food and doesn’t have any like all his siblings and loves his straw cup! He loves clapping and is starting to wave and put his arms up for “so big”! He’s mostly worried about being with everyone else a good majority of the time, but he continues to be our chill go with the flow baby, while being determined to move and do all the things which is so nice for mom! 

Kylo turned 10 months the same day mom had her (early) 8 month Echocardiogram and didn’t need a biopsy or heart cath! 
I told my nurse she forgot to schedule it…I kinda thought she was losing her mind, and she said “you graduated!”!
I think my next biopsy will be at my annual in May as long as I’m healthy and feeling good. It’s so surreal especially this fall and holiday seasons because I remember for sure last year, being so tired and exhausted, not having energy for the holiday things I love, being behind on everything, and just not doing so much because I just couldn’t. I can remember walking outside and it being so cold it hurt to breathe and thinking it was because it was just that cold (granted last year was awful), but in reality it was my heart having to work so hard and it just couldn’t.
I also had a neurology follow up a few weeks ago, the neurologist was very happy with my hands improvement, that I didn’t have to do the big nerve testing so I was Super grateful for that! 
I keep myself busy during the week with hand therapy still a couple times a week, and consistent arm workouts. I graduated from cardiac rehab a while back so I’ve been trying to keep Consistent walking a couple miles a few times a week, pushing the stroller with a 1 or 2 toddler weight resistance, and encouraging the 1 or 2 little walkers to keep up with me! 
We were walking between labs and therapy the other day and I started running to be funny and have Maggie keep up with me…a few steps in I thought to myself holy cow…I haven’t done this in a long time! 
So thankful to have this holiday season together no matter how busy it it! Thank you for everyone’s continued prayers for my strength and health! ❤️
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