On March 25th Ralph started having seizures and was taken to the hospital by ambulance and admitted for 3 days. They ran a whole gamut of tests and everything came back clear. Did I imagine it? Am I just so tired my minds playing tricks on me? No, because he did it again, and again and he’s still doing it- sometimes all day. And then May 3rd Charlie had a seizure and they told us to take him to the ER and have all the same tests as Ralph done. And guess what- 3 days later and all the tests came back clear. What’s even more strange is Charlie had an episode on his EEG and while he had abnormal activity it wasn’t matching a seizure. 2 neurologists, 2 eye drs, and now a referral to Boston Children’s Hospital to their Brain Development and Genetics Clinics later and this is all we know: they have random abnormal brain activity- and while we were starting to think these were infantile spasms- they lack the Hypsarrhythmia waves that are damaging. In fact after 3 eegs each they aren’t even certain any of this is seizure activity- it could be movement and arousal. They have healthy eyes but they aren’t tracking- no one knows to what extent they can see. They have awful acid reflux and are on a special amino acid formula and meds and it still isn’t under control. They are delayed in some areas but likely due to vision and reflux. They don’t cry tears, or laugh (only in their sleep) and rarely smile.
We are waiting on genetics testing and a new MRI which has now been cancelled thanks to covid. A committee in Boston will review and see if anyone will take on their case. Yet, after all these sweet boys have been through in their short 6 months on the outside they are tough as nails and the biggest lovers ever. And after 5.5 months of frustration they both finally got their thumbs. They’ve broken apart from the pacifier gang. IYKYK My family is on a journey none of us were prepared for, determined to keep fighting for answers and hopeful everything is going to be ok. Please keep them in your thoughts and prayers