AbiliDad

26/04/2024

.kastudios keeps telling me that April 25th is the perfect day… looking through our memories tonight I have to agree!
2013 - I took the day off and we went to the with Lia, where one of our most favorite videos was created.
2016 - I got to take Lia out on a daddy-daughter date eating ice cream and picking flowers. We only needed a light jacket.
2022 - Hazel got to leave after more than a month of being confined in her hospital bed! Her gene therapy had finally progressed enough that she could move back to the hotel with grandma and Mandi, and also go outside occasionally! Just a few more months left before she could come home.
2023 - Because of Covid and Hazel’s gene therapy, she went almost four years of her life without ever experiencing a playplace. 😞 on this day I took her down and let her give it a try! She was pretty nervous at first about climbing the stairs, but we eventually got her up to the top and down the slide. We went to McDonald’s last night and she’s now a playplace pro!

01/04/2024

This little girl got back home in the wee hours of Easter morning! and .kastudios traveled with her this past week for her biannual gene therapy checkup in Milan, Italy. Her sisters missed her so much that I thought they might be happy to wake up with her sandwiched between them.
We got some great news from this trip! Previously, Hazel’s brain had shown signs of scarring from the MLD (the photo is just an example) but this time around it showed that the scars were actually healing!!!❤️‍🩹 Her gall bladder had also shown damage and hardening, but now it’s showing signs of recovery as well.
Dedicating a month of our lives every year for these checkups is a huge sacrifice, but we’re so happy that the wonderful doctors, researchers, and nurses have given our little girl a chance at a full and MLD-free life!

24/02/2024

We just got some amazing news this week!

As you might know, Lia was diagnosed with metachromatic leukodystrophy in August 2021. We quickly raced the clock to get her a bone marrow transplant in November of that year. MLD is nasty- once it starts showing symptoms you have months before your previously healthy child is immobile, non-verbal and eating dinner through a tube.

During the time it took for her new immune system to kick in, she lost a lot- but we also were able to save some crucial parts of who she is. The doctors told us that even though she got a BMT, it would likely only slow down the disease. Lia would always test positive for sulfatides because her new immune system wouldn’t be able to completely meet the demand.

We had her annual checkup a few weeks ago and the doctors hadn’t ordered a sulfatide check. We asked to do one so they agreed and got it done.

Well guess what… Lia’s sulfatide levels are NEGATIVE! Her new immune system is working so well that it has eliminated the cause of her MLD! This means that as long as it keeps preforming at this level, Lia shouldn’t see any more loss and decline. ❤️😭

Can Lia’s nervous system and brain heal? It’s possible that some healing can now take place now that her nervous system is no longer under attack. She’s young enough that some of the myelin could regrow. We’ve also been keeping up on various studies and non-traditional options that appear to be helping.

Lia is talking more, and talking LOUDER. She’s more interactive with others. Her toes aren’t dragging nearly as much as they were. Did months ago, she avoided writing letters that had circles- now they’re her favorite thing to write. Every few weeks it seems like we see a little more light in her eyes. Getting back to where she was years ago isn’t in the cards, but we’re happy to embrace EVERY small bit she is able to recover of herself.

05/11/2023

04/11/2023

30/09/2023

How do you motivate yourself when you’re suffering with depression, anxiety or any other struggles that knock us down? Sometimes realistic goals are going to be basic things that others accomplish every day: getting out of bed, taking a shower, brushing teeth or feeding yourself.

Think about where you are and set goals that are challenging, but not so much that you become overwhelmed and fail.

06/09/2023

One of our family traditions is to spend a few days at Bear Lake every year. If you’ve ever been there, you know that it can be a long walk from the car to the waterline.
Lia did an amazing job walking the 1/4 mile with her walker. We got to the point that we had to abandon the walker and she continued with me holding onto her arm.
By the time we reached the water, she was too tired to stand and there was nowhere to sit, so I held onto her while we watched her sisters play.
I’m so proud of her and how much she pushes herself to do the things she wants to do!