Indy's SCA Journey.

🚨Listen to our past webinar!🚨

Check out the valuable resources we discussed last year, from informative infographics to engaging posters, this short watch will make you prepared and confident to use all our specially made resources to raise awareness within your own communities!🌟

Click the link here:https://www.youtube.com/watch?v=a-ojnuwL5gE to immerse yourself in the insights and be part of the change we're championing! Don't miss out – join us in expanding awareness and making a difference today!

Indy is doing well. Obviously, she is LOVING having a baby sister. She is such a good big sister.
She growing and learning and making friends. It’s hard to believe we’re coming up on the 5 year anniversary of her diagnosis. We’ve learned A LOT in these 5 years!
Merry Christmas and Happy New Year everyone. We hope 2024 is overflowing with good things for you. You deserve it. ❤️💕

Today was Indy's last swim practice of the season with Special Olympics. ❤️💗

Please pray for our friend James.

James is very lethargic. Please pray 🙏

Indy swims with Special Olympics Mat-Su, and although she's still too young to compete she has so much fun. 💓

Please consider donating to the Torch Run this Saturday!

Thanks to a very kind anonymous donor, Indy is already over halfway to her goal. 💙

Fundraising for Special Olympics Alaska A fundraising page benefiting Special Olympics Alaska

Tomorrow we meet with neurology to talk about a treatment plan for Indy's central sleep apnea. We also just learned that Ms. Indy gets to participate in Special Olympics training! She is too young to compete, but she's finally old enough to train. She is so excited!

We don't want to update on here much unless we've got good news, and our good news today is that Indy is getting ANOTHER baby brother or sister, coming this fall. If you know Indy, you know she loves nothing more than babies.

If you've been here for any length of time, you know that sleep is a serious issue for Ms. Indy. She recently had another sleep study, and this morning we received the results. India has severe central sleep apnea. She stops breathing on average, 26 times a night (I mistakenly wrote per hour, had to correct). This is a neurological issue and I think it's safe to assume it's due to her condition. Central sleep apnea is not like obstructive sleep apnea (this article will explain it better). Please keep Indy in your prayers, it explains a lot. It will probably be a few months before we're on a treatment plan, there's a whole lot of waiting.
https://www.mayoclinic.org/diseases-conditions/central-sleep-apnea/symptoms-causes/syc-20352109 #:~:text=Central%20sleep%20apnea%20is%20a,muscles%20that%20control%20your%20breathing.

Mom got some shots of Boo's larger-than-life personality.
Valentine's day is just 10 days away!
Happy Valentin's day from our family to yours.

On October 12th India received an official diagnosis of IDD. An Intellectual Developmental Disability. This isn't usually part of having SCA, but there are a few people with similar mutations that also have IDD. Everyone who has SCA experiences it differently.

Developmentally, she is around 18-28 months. Indy is almost 6. We already knew, but it explains a lot. Having an "official" diagnosis will help Indy get access to services now and as she gets older. Now we know where and what we should be working on in homeschool, too.

We will probably be taking a big step back with her curriculum. It's OK to push a child to do their best, but it's not OK to push an already struggling child to do things they're not ready for or don't understand. All this does is frustrate everyone! We're just going to slow down and back up and meet Indy where she's at.

Anyway, thank you all for your continued support. We don't share much here anymore, and will probably continue to only update every few months.

Sweetest little girl.

Indy is doing well. She's just getting over a pretty bad upper respiratory infection but seems to feel fine.

Tomorrow we visit the developmental behavior pediatric specialist, and on the 12th we FINALLY get the results of Indy's neuropsych to see where she is at developmentally. Having developmental disabilities isn't bad, we're not dreading the results, but we do need to know where she is at in order to meet and teach her there. Pretending that she is able to do everything the way a "typical" or the average kindergartener can do won't help her, that will only frustrate her and us. Indy is unique, how and when she learns is unique too, and that's ok. Indy marches to the beat of a different drummer, and that drummer playing Rush's Tom Sawyer. Plus, we need to adequately plan for her future.

She is in therapy Monday through Thursday, she's in Awana (she's a Sparky) and she's even been welcomed as a Pathfinder in American Heritage Girls; a faith based alternative to girl scouts. Needless to say, she's a busy girl.

https://gofund.me/c24b8b63

#Loveforliam Liams medical and other, organized by Mary Matheson Hi everyone as you know Liam has had very serious medical issues since he was born.… Mary Matheson needs your support for Liams medical and other

August is AT Awareness Month!

Help us spread the word about this awful disease! Awareness means more research & more studies, more trials, so hopefully one day a treatment or a CURE can be found!

Playing in the rain is her favorite.

-SAVE THE DATE-
We hope you can join us to premiere four all new adventure films at the Bear Tooth Theatrepub & Grill on November 12th.

We'll be hosting a silent auction to help raise funds for next years adventures. If you're interested in donating to this please email us. Thank you and look forward to seeing everyone!

The progress on Indys arm.... really isn't supposed to look like that. We should have gone with pins from day 1.

Sometimes the best adventure isn't an exotic far away place but a familiar trail. Last year we had the chance to serve the Sivils family. When asked where they wanted their memories captured the answer was a trail close to home.

Watch their adventure here:
https://www.facebook.com/watch/?v=552509405871486&extid=NS-UNK-UNK-UNK-IOS_GK0T-GK1C&ref=sharing

Did you see the Wasilla Parade today? Miss Indy & Eilie were in the parade with their American Heritage Girls Troop. Eilie joined late last school year and this will be Indy's first year. We really love this organization!