All the words and acronyms make my brain swim at times!
We’ve been at Duke this week for another round of IV steroid infusions. After today, Harper will have had a total of 8 infusions… but no progress yet.
We met with the doctor yesterday to discuss this, and he decided that it is time to move to the next plan of attack. And I say plan of attack because that’s exactly what it is- an attack. We are attacking this disorder with all we’ve got, but unfortunately this disorder and these treatments attack my girl’s body at the same time. We are experiencing loss, and battling side effects that are physical, behavioral, emotional, and mental.
The next weapon they’re pulling out is called IVIG infusions (immunoglobulin therapy). Basically she will get pumped with antibodies from other people, a treatment that is used for a wide range of diseases and is quite expensive (thank goodness for great insurance!). It has to be done in-hospital initially, so we won’t be trying for a home-health nurse now. If she proves that she can tolerate the treatment and they go long-term with it and put a PICC line in, we may revisit that in a few months.
The side effects of IVIG are pretty intense… dehydration, migraines, and flu-like symptoms, and we were taught about something called aseptic meningitis. It will be an all day process, and will be done in conjunction with the three-day pulse steroids that she’s already receiving. We have decided to wait and start this the first week of January.
While all of this can be a bit overwhelming (okay, a lot overwhelming!), we did learn from the neuropsychologist that while Harper is not currently able to learn and retain new information, she has not fully lost her cognitive skills as of yet, which is a huge blessing in the midst of this crazy ESES stuff! She is struggling with short term memory loss and a general sense of confusion and lack of awareness, but with enough prompting and one on one attention those previously learned skills can be pulled out. It’s like she has a box locked up inside her brain and we just have to help her find the right key to open it right now- some days the key is right there, and other days it’s jumbled up in a big drawer full of keys!
I would be lying if I said I never worry about what lies ahead for this little warrior of mine. I am aware of what this disease can take from her. I’ve seen the kids who lose their ability to learn or walk or talk. And I know all too well that it only takes one seizure to lose her this side of eternity.
That’s why I don’t take one minute with her for granted. I am learning every day to be grateful and praise God for every moment, and to make the moments count. We don’t live in fear but in gratitude for all He has done and all He has yet to do. Every moment of hers and every moment of mine is in His hands, and we’ll live those moments to the fullest, striving to bring glory to Him in the process. 💜