It’s been over a month since Harper’s last major seizure.
I’m thankful. However, the last month has brought significant changes. We began noticing a regression again… repetitive questions, confusion, needing more help in daily activities, and academic struggles. Her mood swings have been violent at times, and she fatigues so easily again. Some changes have been small while others have been bigger (such as certain academic skills suddenly being lost completely), and we’ve gone back to sleeping right next to her so we can monitor her more closely.
Just over a week ago we completed another in-home EEG study. A couple of days ago I received a copy of the report, but I haven’t been ready to share.
The last EEG was abnormal, but at a low percentage (spikes and waves less than 10% of the time). There was talk of decreasing meds because it was the best EEG she’s ever had. We were hopeful that she had outgrown the disease that had caused so much damage and regression.
This EEG was also abnormal, but at an alarmingly high percentage (over 90%). That means that although she isn’t have full-blown seizures, her brain is misfiring almost all the time again.
Not the news we wanted to hear.
We’ve only read the report, and still have a couple of weeks until we speak with the neurologist to see what exactly this means. One report says this is not ESES, while another makes no claims. We know these numbers can indicate a few different possibilities in terms of diagnosis, and looking those up will bring a mama to her knees. I know because I made that mistake and I saw the words such as cognitive deterioration, poor prognosis, and increased risk of SUDEP (Sudden Unexpected Death in Epilepsy), words that do not have a place in my girl’s story.
So, I am banning myself from Google, patiently waiting to see what the doctors propose next, and refusing to let fear and anxiety have a place at my table as we enter into Thanksgiving week. Instead, I will be thankful.
- Thankful for every day I don’t witness a seizure.
- Thankful for every morning ablaze with new mercies.
- Thankful for life.
- Thankful for the sound of my child’s voice.
- Thankful for every hug she has to give.
- Thankful I get to answer her questions, even when they get asked over and over.
- Thankful for her extended innocence.
- Thankful for laughter.
- Thankful that I get to hold her hand one more day.
- Thankful for her strength and courage.
- Thankful for her joy that overflows.
- Thankful for the One who holds her future.
- Thankful for hope.
O give thanks to the Lord, for He is good; for His steadfast love endures forever. -1 Chronicles 16:34