Following the ever changing life of Maliyah and her family.
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Its not every day that we ponder the “normal” or actually take a full account of an uneventful weekend. But as anyone that follows our blog or even stays loosely updated with our journey knows, normal is somewhat spectacular.
Almost every day that is sunny we are outside catching butterflies. Maliyah has gotten pretty good at catching and releasing them.
During this holiday season Adam and I miss the mountains of Colorado, so this trip up to the mountains helped us get up to some cooler weather and some mountain views.
This past week we were invited by my good friend/sister to ride horses! It was Maliyah’s first time on a horse and she loved it! Thank you Aunty Keani for an amazing time!
This video is about Maliyah's Broviac surgery on October 6, 2020. We flew over from Kauai to Oahu the day before and flew back the same day of surgery. Maliyah did amazingly well and seemed to bounce back rather quickly.
Touring our 400 sqft home that we are staying in while our home in Eleele is being remodeled. It's in an amazing location and Adam has done an amazing job at gutting and remodeling this place in exchange for rent. As nice at it is we're busting at the seams with 3 humans and a dog, and we can't wait to move into our new place!
A day in the life of Maliyah who was born with a very rare disease called MMIHS. This video shows the day in and out of a life with TPN.
After almost two weeks in the hospital I was induced and 12 hours later Maliyah Eunmi Caswell was born… Little did we know the roller coaster ride were about to embark on.
Adam called and told me that the genetic test was positive. Maliyah had MMIHS. It was like the world stopped moving for a moment and things just felt fuzzy.
Join us as we navigate out of state care at the University of Nebraska Medical Center. We are in search of solutions to help Maliyah’s symptoms of MMIHS.