Alyvia's Arteriovenous Malformation- AVM Journey

12/03/2025

hope everyone has had a wonderful thanksgiving this past week! it's been a good while since being on here. wanted to give an update on how our sweet Alyvia is doing. since our last post, Alyvia has since started homeschooling and is thriving on that! we are so blessed to be able to keep her home to do her school work and also able to take her to work with me (her mama) on a daily basis. therapy is going great! we are still working on some different expectations for her to meet soon. overall, this time we have been off has been much needed for her and I to focus on many different things. we love all of y'all and wish nothing but the best for each of you!! i will be posting up some improvements she has had over the summer and fall, so keep an eye out soon

How has everyone been???

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05/12/2025

Worked on an area that's really tough and still pretty weak today. She struggled pretty hard at first but we found her motivation to keep pushing through. Her AVM affected her left side all the way down, from her arm to her foot. Now, she has a very hard time moving her left foot, which is why we will be getting her brace in a couple weeks to help with that.
This bear crawl going sideways pushed a lot of limits with her. There's always a new stretch that works on a different area of her body.
I can't wait to see how much she'll change in a few months after having her brace to help her ankle/foot.
This kid has pushed through so much and is doing great! Just 2 years ago she had to relearn how to sit up and walk and everything that she's doing now. In 2023 the brain bleed/seizure she had from her AVM growing back gave a her a 25% chance of making it through and she went through 11 days of being on life support. It took her a month before she could take her first steps by herself again. She still has some other issues, but Alyvia is such a trooper and I'm so proud of who she has become even after all these obstacles she's gone through!

04/29/2025

This is today. The band that's on her leg has 20lbs of pressure that can be put on it. It's stretched out pretty far and with her lifting her leg makes it about 30 lbs of pressure she's lifting. That leg has got some serious power, she just doesn't realize it yet. Should be getting her AFO brace in a week or so, hopefully sooner.

04/29/2025

This is when Alyvia started doing therapy after her brain bleed back in February 2023. She still needed help sitting up as well as needing help with standing and couldn't walk yet. She struggled so much but pushed through and did the best she could!

04/28/2025

Alyvia still struggles with being weaker in her left leg/foot. We've been working with her on that. Here she's raising herself up with help from the bars. The trampoline, of course, makes it a little more difficult on her. She still powers through!

With summer coming up and her having her new AFO, she'll improve so much more with that AFO for her ankle/foot. She should have a new AFO in a couple weeks. Hopefully, before we go back to Nashville for another MRI.

No matter how hard life hits her, she stays tough but still keeps that heart so sweet ♥️

03/21/2025

Still trying to work on the balance but here she is trying to balance on her own on these. Going forward, she was able to go without holding onto anything. She needed help walking backwards though. Most of the problem is her lack of confidence in succeeding. Also, a little nervousness. She's doing great, otherwise!

02/14/2025

Happy Valentines Day from our sweet Alyvia!

01/19/2025

This was during her therapy session on Friday. Look how well her stride is! Also, notice how her left foot steps down heel, toe? She hasn't been able to walk like that probably since she was 2 and before her brain surgery 6 years ago. She still has a hitch on her left side because her left glute and hip are pretty tight. We have been working on that. It will go away eventually and she'll be walking and running like she's never had any problem!

01/17/2025

Chilling for the night at the hotel after her dr appointment for her elevated BP. The dr isn't too worried about it but would like for her to be back on February 14 to check again.
Right now her and dad are having fun playing Mario 😆 nothing beats having fun time with family even if it's staying inside and enjoying the evening together ❤️

12/28/2024

She's been begging for her own pet for so long (she really wants a dog but we dont have room for one) but was still so happy and humble with this little fella here. Meet Reddy the new member of our family 😄

12/21/2024

Got a referral for a cardiologist sent out from her rehabilitation doctor to Vanderbilt. I don't think we wanna stick to any doctor here in Knoxville. Most of her doctors are there anyways, so it should hopefully work for the best. Blood pressure is still crazy. Thankfully tonight it's not so bad.
Had to go to the store tonight and get a new blood pressure/pulse machine and this one is good, it inflates and deflates on its own, so helpful.

12/20/2024

Got an issue that's just popped up over the last week. For some reason Alyvia's blood pressure is sky rocketing. Her school nurse and therapists at school have been keeping a close eye on it all week. She had an appointment with her pediatrician this afternoon and he is referring her to a cardiologist for them to do better testing on her. Should hear back soon about the dr. She seems to be doing alright, but this blood pressure going really high is very worrisome and could cause the AVM to grow back. We definitely do NOT want it to come back.
Keep her in your thoughts and prayers, please. Thank you 😊