Just Keep Swimming

Everything with Lu sort of calmed down after the MRI. Her symptoms are still there, but they are stable and we still don’t know what’s behind them so we can’t really be proactive. There likely won’t be any new, big information until we start talking about eye surgery in the … Continue reading

Three Months

Lu’s fall and the knee fracture may not necessarily be connected to her subsequent symptoms, but it seems like the starting point of the health concerns and doctor visit merry go round we have gotten trapped on. She fell on December 27. Her eye crossed January 6. The third issue … Continue reading

Fatigue

Sigh. Last week, Neurologist called with the MRI report and seemed convinced that the excess spinal fluid was the cause of at least some of Lu’s issues if not all. Unfortunately, after he spoke with Neurosurgeon, he rescinded that answer. Our Neurosurgeon visit today offered no further illumination; the pineal … Continue reading

An answer

Our amazing neurologist called yesterday morning and while he had not personally seen the scan yet, he had spoken to the radiologist and there is something there. #NOTATUMOR, but there IS extra fluid on her spinal cord – pretty much all over, from her neck down to the lower spine. He has referred us to … Continue reading

MRI Day

Mission accomplished! We made it the required 3 weeks of cold and fever symptom free time and got toLu’s appointment early today – no traffic heading into the city. She changed into hospital jammies and calmly played and colored while they took her vitals and we waited for her turn. … Continue reading

Progress

Last Thursday was really hard and it pushed me right over some kind of edge where I had been teetering for the preceding few weeks. I had been barely holding on and that was a breaking point. I have since regrouped and just keep putting one foot ahead of the other. … Continue reading

Holding Pattern

Today was… disappointing. And stressful. AGAIN, I banked on making some progress and having a Plan and we got nothing. I update here because not everyone is on Facebook and so many people love Lulu that it is overwhelming to have individual conversations with everyone; it is easier to put … Continue reading

Maybe MRI?

Everyone has asked us 853 times what we need. And really, aside from cloning me and/or providing more hours in a day, there isn’t much. But we absolutely could use some good juju around here. Please send some misheberachs or positive vibes or whatever prayers you’ve got our way. Sending Love … Continue reading