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.

I wrote this blog back in April - I thought I had posted it but I hadn’t sorry!

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 exactly a year ago Maliyah was life-flighted over to Oahu and from there its been a roller coaster of insane proportions…

Ever since Maliyah’s hospitalization in August things have settled down and we feel like we are living life again. We’ve had almost 5 months without any infections, blood clots, or bloating episodes!

I read something a few weeks ago that parenting a special needs child has it’s incredibly challenging moments but it makes the “ordinary” moments extraordinary. The lows are lower but the highs are also higher. A few points in this journey we thought that we were going to lose Maliyah.