Steps aHEAD for Malia: Keeping Up with a Hydro and PMG Warrior

03/22/2026

We took Malia to a local venue featuring Christian music and family-friendly entertainment, where she enjoyed her time dancing and well as imitating others' praise, bringing joy to the community we shared this auditorium with. The warm response of smiles and laughter that those around us shared with us touched our hearts, and we're grateful for these shared experiences.

02/28/2026

Happy Rare Disease Day 2026!!!
While we don’t always keep this page fully updated on our happenings and progress with Malia, this is a day we can’t ignore to commemorate here. We are so grateful that we have had all the great experiences, learning, teaching and even downfalls because of Malia’s rare disease of Polymicrogyria. We find ourselves daily saying “I wonder what is actually going on in that brain of hers” after she will perform some feat that leaves us awe-struck, laughing or nervous as can be!
Today is for the rares. Happy Rare Day to all of our other rare friends!!!

08/05/2025

“Where’s my cheering section?!?!” She asks. Malia invites all her Green Bay Area friends and family out to her final full Miracle League Baseball game Thursday night at Allouez Optimist Park/Miracle Field located at 1680 Libal Street. She plays at 7 and loves showing off her sweet base walking skills, as well as might cut out some dance moves in the outfield with her BFF. If you can’t make it Thursday, she really thinks everyone should go Tuesday or Wednesday evening and check out a game. They are so much fun to watch and very rewarding! Closing day for the season is on Saturday with her game at 2:05. Thank you to those who have made it out this season and we look forward to seeing more of you Thursday!!

05/25/2025

Another Milestone in the books!! Malia is walking on her own!!!
We had noticed a big boost in her confidence at home and at school with walking holding someone’s hand and conquering some long distances doing that. Suddenly a few days ago, so decided to do it without holding any hands and we are so proud!!
Stairs have also been a very tough thing for her confidence to get a good handle on, but she is loving doing them on her own (or with minimal assistance).
These are moments we cherish and can’t wait for a fun summer ahead to keep making more progress, and hopefully hitting some more milestones!!

01/23/2025

Our friends over at Exceptional Equestrians just put out their 2024 Impact Report and featured a great testimonial for the one and only Malia for their Hippotherapy program. She wasn’t too happy with her photo being taken when it was, but believe us when we say she was having a great time on her ride that day!
Having this resource so close to us has been an incredible experience for us, and we love seeing the weekly progress made by Malia in her horseback therapy sessions. We definitely look forward to working more and more with the hard-working team at Exceptional Equestrians for a long time to come!
You can view the whole impact report, and get to know more of what this great organization does here:

https://exceptionalequestrians.us22.list-manage.com/track/click?u=423ad8a3891000fd07b472c0a&id=22aed79d25&e=95a6fa16a3

09/18/2024

We love seeing this event every year! And a big plus this year that one of Malia’s favorite class friends and class aide made the video! We say it every day that this school has been the biggest blessing ever in our lives since 2023!

Nearly 180 special needs students from Syble Hopp School in De Pere were greeted by some budding Packers stars.

09/16/2024

Week 2 of horseback therapy is in the books! Malia absolutely loves her time riding now each week, and goes from very nervous/tired/screaming fit mood to calm and collected as soon as she gets on the horse. While the wait to get into these visits was a lot, it is so well worth it for the work she’s putting in and how happy she is. She’s already excited for the next visit!!!

09/04/2024

Some months ago, I was asked to join in on a podcast to share my/our experience with Ronald McDonald House Charities of Eastern Wisconsin, how we came to be well acquainted with all it has to offer, and how wonderful this organization has been (and forever will be). I was joined by a NICU Mom, Edna, who was ‘celebrating’ 100 days of staying at the house while her daughter was being cared for by the incredible team at Children’s Hospital. The Podcast host, Andy, made us feel right at home and this was an experience I’ll never ever forget! I’m so happy it’s “published” and our stories can be shared, heard, and maybe even related to by others.
Check it out here:

Families don’t plan to receive the news that their child is very sick and that the medical care they need is across the state, the country or maybe even on t...

08/30/2024

It’s SHUNTIVERSARY Day!!!
August 29, 2021 is one day we will never forget. An average Sunday morning turned scary when Malia wouldn’t stay awake and had a series of crying and vomiting episodes. We knew what it was. We had been down this path too many times in her near 22 months of being with us at that time.
It was a shunt problem. 2 long hours later, we arrived at a very busy and wild Children’s Hospital Emergency Room to get checked out. By this time, some of the nurses recognized us all too well. Tests came back to confirm it was a shunt malfunction and her 5th Shunt Revision surgery was needed. Yes, that’s a total of 6 shunt surgeries in 18 months (and only one of those scheduled when she was just 2 months old, the rest emergency visits).
Thankfully, it was the last one she’s needed. After that surgery, every Neurosurgeon at Children’s WI had performed a shunt surgery on her. It’s been quite an adventure. Each year, we celebrate this anniversary of her last Brain/Shunt Surgery, or Shuntiversary. So, Happy 3rd Shuntiversary Malia!!! We kept it low key this year with just the 4 of us, and look forward to celebrating many more of these!!

07/27/2024

Just a Saturday afternoon Pajama Day at the beach in the Wisconsin northwoods…

04/17/2024

She loves getting discharged!!! After a very good night of sleep and a fun morning watching Bluey and playing her favorite electronic games, Malia got to leave West 7 yet again at Children’s Hospital! She got a pretty clean report from the neurology team, and is not having any seizures at this time. These monitoring sessions will continue for a very long time with her, but that’s something that we can definitely deal with. Thank you all for thinking of us and for all the kind words!!

04/16/2024

4ish hours down, 20 more to go!! Malia got checked in early this afternoon for a full 24-hour stay at Children’s Hospital for a Long Term Monitoring visit. After what felt like hours of screaming and fussing, the great staff here were able to get about 25 leads set up around her head, put a long “sock” to cover all the wires and sent her back to her room to hang out in.
Being diagnosed before she was born with one Neurological disorder affecting the outside of the brain (Diffused Bilateral Polymicrogyria), and then being diagnosed at 2 months old with a second Neurological Disorder affecting the inside of the brain (Hydrocephalus), we have always known seizures were a possibility, and highly likely. But, now that this study is here and we will know soon enough if she is actually having them (yes, we brought up some concerns to doctors to have this ordered), we are filled with a nervous/anxious/depressed type state that’s too hard to even explain.
Just as we have every step of this journey we have been on now for nearly 4.5 years, we will take whatever is given to us and make the most of it. We are just beyond elated that even with wires and a giant “sock” connected to her head, she’s still in great spirits and enjoying her alone time with Dad! We will keep everyone posted on what we find out as we continue pushing ahead and watching Malia surprise so many with her progress and personality!!