I started this blog a while back as an inspiration for other families as well as for myself. I wanted a way to keep track of all of the little details of Luca’s progress so I wouldn’t forget over time. Well, life happened and I just stopped for a while…a long while.
Let me backtrack a bit! A couple years ago,Greg and I had planned to start a Non-Profit called Loving Luca. We did a ton of research, wrote a mission statement and started the process. However, it’s A LOT of work and we ultimately decided to shelf the idea.
That all changed on July 16, 2020….
I had a gym class at 6:15am that morning. Luca is typically up before I leave, but he wasn’t that morning. Usually when he sleeps in (yes, 6:15 is sleeping in for him!!!), it’s a sign that he’s not feeling well. I went to my class, but forgot my phone at home for the first time ever. I can’t take anything in with me except my keys due to COVID-19 restrictions, but I always leave it in the car and I check it as soon as I get back in. Something wasn’t right when I walked out of class, I could feel it. I even forgot my keys on the table at the gym and got all the way to my car before I realized and had to go back in. I couldn’t shake that something felt off, but I didn’t know what it was. That answer came as soon I turned the corner onto my street. There was a firetruck and a rescue truck in front of my house and an EMT was walking in the front door. I don’t even remember putting my car in park and jumping out; my whole body was trembling and I wanted to vomit. I walked in the door to find my little Luca laying on the ground with Greg next to him and about 6-7 firefighters and paramedics. Landon (3) was standing behind them just looking utterly terrified. The look on that little boy’s face forced me to pull myself together and not panic. He was already terrified and he needed his mom. I picked him up and snuggled while while I got details of what happened.
Luca had had a seizure. Not like his normal focal seizures the last around 15-30 seconds; no, this one was different. Luca actually stopped breathing during this seizure and it lasted over five minutes. Luca started to come out and then he stopped breathing and started seizing again. Greg panicked (rightfully so!) and he called 911. In the meantime, Landon witnessed all of it 😦 I have never seen my husband so emotional, ever. He was a mess, just as I would have been had I been the one at home. As I was sitting down with Landon getting these details, my Apple Watch went off with texts from Greg telling me to come home right away because Luca had a massive seizure and he had called 911. He tried to warn me and to save me from walking into the unknown, but that nice delay of text transmission was a total failure (thanks AT&T for slow data). Greg carried Luca to the ambulance and I took Landon outside to watch the scene. One of the firemen offered to let him sit in the truck, but he was so scared. He lasted 15 seconds max.
The ambulance left for the ER with Greg and Luca. I stayed with Landon to keep him calm. We watched cartoons for a few minutes and then I took him to school. I didn’t have any other care options for him and I NEEDED to go see my little Luca. Plus, I thought maybe a normal day of distractions would be helpful for him. When I got to the ER, I learned Luca had another seizure there and needed Ativan to stop it. He was definitely super medicated and out of it by the time I arrived. The doctors admitted him to the hospital and got him hooked up to an EEG to see what changed in his brain to cause these new seizures. It turns out, he was having tonic clonic seizures, which were definitely new. (Tonic clonic is the updated medical term for what most of us know as grand mal seizures.)
We had been controlling Luca’s seizures with natural supplements for two-years prior to this day. Our neuro added one new med to our plan called Depakote. Luca received his meds via IV to get them right into his bloodstream and we went home the next day thanks to COVID-19. The hospitals were discharging everyone as fast as they could due to the risks.
We were fine through the weekend and thought that we were on the right track. Luca had a small seizure on Sunday night, but we didn’t think much of it. However, Monday morning brought a new change. Luca had 6 seizures that day and we decided it was to go back to the ER since something wasn’t right. While these were his quick and typical focal seizures, 6 is the amount he has in one year – NOT one day. Something just wasn’t right and we didn’t want a repeat of the tonic clonic seizures. While in the ER, he had two more seizures and got yet another dose of Ativan to stop them. This time, we pushed to get an MRI to see what going on. The plan was for Luca to be admitted and monitored for 2-3 days while getting IV meds, so we were going to be at the hospital anyways. The neurologist thought he likely didn’t have enough meds in his system yet and that was the cause of the breakthrough seizures. Apparently, they take around 2 weeks to really go into full effect….
The MRI showed that Luca has an asymmetry of his two temporal lobes and that he has Lennox-Gastaut Syndrome. This asymmetry is difficult to detect in infants, which is why it wasn’t noticed when he had his MRI at 8 months old. However, it’s likely what caused his Infantile Spasms (see previous post), which was the onset of his epilepsy as an infant. This tells us that his seizures will likely be difficult to control moving forward and it’s recommended that he be on two anti-epileptic meds. For now, we will add Keppra to the Depakote and will try to wean off eventually. Keppra is a nightmare and gives Luca horrible mood swings, so fingers crossed it’s not long term.
Are you wondering what my point is yet?! After a rough two weeks of getting Luca’s brain back to “normal”, we decided there is no better time to go back to our original goal of starting a non-profit. Our goal is to help other families like ours and fund research. We are now moving full speed ahead with the Loving Luca Foundation! At this time, we will be using funding for Luca, research and development and grants for families with unique children like Luca. Once the details are finalized with an attorney, I’ll be back with updates! For now, we are officially registered with the US Treasury and Illinois. Our 501c3 is pending approval at this time.
For now, we are onto out next adventure! I can only hope that LLF will grow tremendously and that we will able to make a huge impact in the special needs community. At least that’s my long term goal for us 😉