Lennyn update: Good news: her eeg has improved since she was hospitalized. Leaving the LGS diagnosis in her chart so she is approved for certain meds, but she doesn’t have a concrete diagnosis YET. Bad news: her eeg still looks messy and she could further progress to a concrete diagnosis. Good news: there’s a lot […]
Read More EEG Results
Big EEG day for Lennyn. Prayers in overdrive that she doesn’t have LGS and her amplified seizures were a horrible side effect of a medication she is now off of! #LennynStrong! 💪🏻💪🏻💪🏻♥️
Read More Big Day!
Lots of messages for a Lennyn update. I don’t have an update but she’s getting lots of rest and is currently super cozy with Mr. Sloth napping. Hoping to have a nighttime nurse in the next week or two so we can get cozy and rest, too. Please keep the prayers coming. LennynStrong
Lennyn update: Just got the smallest bit of hope from neurology and we are freaking CLINGING to it. Keep the prayers and manifestations coming because we’re getting somewhere. When Lennyns seizures started increasing, she was started on Trileptal. It’s a great drug for focal seizures. It is very rare, but in some patients, trileptal will […]
Read More Hope!
MRI in: Fine in the mysterious cyst department. Didn’t even see one in the detailed MRI. Got to see Haridas (Lenn’s Neurosurgeon)! He’s down with the CBD. Brought it up himself. He said he’s supportive of anything that will potentially keep her off his OR table. He said he’s seen it work, he’s seen it […]
Read More MRI/ Neurology update
Not much of an update but Lennyns LTM (long term eeg) continues to look like shit. It’s not one area of the brain that is spiking, it’s her entire brain. Abnormalities are coming from everywhere. Tomorrow we have a rep coming to train us at the hospital on portable oxygen, full size oxygen, and a […]
Read More More monitoring
Lots of messages I haven’t been able to respond to so figured I’d update here: It looks like Lennyn is developing Lennox-Gastaut Syndrome which is a progressive epilepsy syndrome that causes tonic and atypical absence seizures and intellectual disability. It is common in kids with brain injuries like she sustained at birth. 90 percent of […]
Read More Hospital update
Please pray for our poor baby. Back in the hospital as she had her first convulsive seizure and a six minute window of hypoxemia. I just don’t understand why she can’t catch a break and why she can’t just be a kid. My heart is breaking for her. I would do anything to trade places […]
Read More Please pray