One week before I went into labor, I found out my husband was using hard drugs. He entered a recovery program, but it wasn’t enough. At about 4 weeks old, Penelope developed involunatary eye movements. Her eyes bounced rapidly up and down, independent of any control. On the same day my husband left for his inpatient program, I had to rush Penelope, now 6 weeks old, to CHOP (Children’s Hospital of Philadelphia). We were there for a week, where Penelope underwent several days of pokes, prods, a long term monitored EEG, and an MRI of her brain. This first stay in Children’s Hospital of Philadelphia showed a clear MRI (thankfully), and since she had no episode on the EEG, we had nothing to go on from there. After that stay, we saw the leading Neuro-opthomologist in the country who diagnosed her with upbeat nystagmus, a condition that can have horrifying pathology associated with it (you can sort of get an idea of what it looks like on this video here: https://www.youtube.com/watch?v=b8j3LcwY2ZM
). Not too long after our first stay at CHOP, Penelope was admitted again for another week. This time she had an even longer long-term-monitor EEG, alone with an MRI of her chest, abdomen and pelvis. Thankfully, the MRI was clear. She had several episodes on the EEG, and we were able to rule out seizures. Around this time Penelope’s father relapsed with drugs, and was no longer welcome in our home. He is currently in recovery and trying to get sober. This has left me as a single parent, pretty much from the start, with a single yoga instructor's income. At this moment Penelope is under the continued care of her pediatrician, opthomologist, a neuro-opthomologist, and a physical therapist. We are grateful for their help. We are continuing to search for answers for Penelope, as well as looking to meet others with this condition. Upbeat nystagmus being different from horizontal nystagmus. Unfortunately, the medical bills from Penelope’s care have built up, and are more than I am able to pay. We are grateful for any help. Penelope is a loving, unbelievably sweet baby. I look forward to sharing her progress. Thank you so much!