#FighttheMadness 2018 edition

January has been such a crazy month! I’m thankful to each and every one of you who reach out with words of encouragement and prayers for Maddi and our family. I can promise you, they are felt! I wanted to take a second and give an update on Maddi’s health and some things that will…

2017: A year in review

This time last year, I was very ready to kick 2016 to the curb. It had been a year of heartache, stress, and constant worry. Going into 2017 seemed promising for Maddi’s wellness. She had been doing very well for several months on a combination of Plasmapheresis, Rituximab, & oral steroids. As 2016 closed, she…

Sometimes it’s bad, but then sometimes it’s good, too.

We are crazy prepping for Hurricane Irma here in Florida. Having a child with a chronic medical condition has me extra anxious, so we are staying put & hunkering down, so we can be close to our hospital (just in case!) Maddi has been battling an abscessed tooth for the last several weeks that just…

The use of Bortezomib in Autoimmune Encephalitis

In late 2016, when Maddi developed a central line infection, it was discovered that her IgG levels were bottoming out each week following plasmapheresis. Her health was at a very crucial point, and she was dangerously close to a scary place where even a small infection could mean live or death. It was then our…

Navigating an Autoimmune Encephalitis diagnosis

You’ve likely found this blog because you, or your child have just been given a diagnosis of Autoimmune Encephalitis. Welcome! I’m glad you found us, although I wish it were on different terms. Autoimmune Encephalitis- what in the world is that?!? If you are anything like my husband and I, ¬†you did exactly what we…

Happy Year One, Baby Girl.

My Maddilyn, It’s been one year. One year since we rushed you to the hospital in the middle of the night. Daddy held you in his arms in the backseat. I could hear him telling you that it was going to be “ok,” he was trying to keep his voice calm, I was crying, Daddy…

One year later

I consider April 28th, 2016 to be the “official” start of this journey, although Maddi had been sick for many months before. On April 28th, 2016, Maddi casually stepped on the scale in my bathroom as I got ready for work: “38.5 Mommy” Wait? 38.5lbs, that’s not possible- I thought to myself. Just weeks previously…

EEG

Maddi is getting a follow-up EEG this morning, as her last one was about 6 months ago. NMDA-R Encephalitis makes Maddi susceptible to continued seizures, and its unclear how long this will be an issue, which is why her Neurologist will keep her on anticonvulsants for a minimum of two years. At the onset of…

February 2017 update

When we went for our surgical consultation last week, the surgeon asked if we wanted to keep the caths once he removes them. Maddi: “eww, that’d be gross!!” Surgeon: “some kids are really attached to their lines!” I laughed with my best friend about this later on; what an odd thing to have sentimental value….

Surgery Day

Today Maddi had her external catheters replaced with an internal port. The internal port will allow long term vessel access without having to fish for, or damage a vein. The surgery itself was very brief, and the doctor’s reported that the placement of the new line went off without a hitch. Due to the irritation…

Florence Fourth Road Race

This past weekend, Jason, Maddi, Jaxon, & myself, made the 500 mile journey to Durham, North Carolina to participate in the 5th annual Florence Fourth Road Race. This was the first time our family had ever traveled out of state, let alone with Maddi and all of her special needs. Jason and I prepped months…