Unfortunately, Sterling simply wasn't well enough to go. He spent everyday in a haze, constantly seizing. It was like having a newborn baby to care for again. The seizures cause him to fall so often, he's basically stopped walking. When he's able to put food in his mouth, it falls out as he forgets what he's doing mid bite in a seizure, or he begins choking on food he's trying to swallow when a seizure hits. He no longer talks or plays. For the most part he spends everyday in someone's arms or sitting on a couch. It's heartbreaking in the truest sense of the word. Some days I'll optimistically believe he's getting better...his hundreds of seizures slightly reduced. Some days I sit and watch and I'm unable to make it to the count of 60 without a seizure hitting. He drools, a side effect of the trauma to his brain. I never realized how attached I'd become to having "twins" until one of them wasn't able to be with us. Anytime I was in public with only Ella, I'd feel like we were missing an essential component, like walking around without a leg.
Mid February we got snow! A beautiful blanket of white to hide all the flaws.
It's a little hard to look back at these pictures. So many of them, I can tell he's seizing in them. Like this one...
The weekend of Valentine's Michael was released by the Army for a medical emergency to come home to Sterling.
I traversed dangerously icy roads to pick up Michael from the airport. You can imagine how happy Ella and Sterling both were to see their Daddy. And you can imagine how hard this return was for Michael. When he left just over 2 months prior, both his children were happy and healthy. He returned to a very sick little boy, having hundreds upon hundreds of seizures a day. It wasn't exactly a happy homecoming for Michael.
The next Monday we checked back into Children's. This would prove to be our longest stay yet. Upon checking in they placed Sterling on a VEEG. In addition to the usual EEG, he would be video monitored 24/7, in hopes of making sense of some of the seizures he was having. It also meant for several days, he was confined to a hospital room in front of a video camera. He spent days wearing the EEG leads, even as they left little sores on his scalp.
A battery of additional testing was done. DNA and genetics tests, examined by scores of various doctors, a lumbar puncture, ramping up his medications and adding more to the mix.
Eventually he was able to come off the VEEG. It had confirmed what I had already known, he was in fact having hundreds of seizures a day. It wouldn't be an exaggeration to say he was having 500+ seizures everyday. We were still in the hospital, and would remain in the hospital a lot longer, but he was finally able to take trips out of his room, and Ella could come and visit!
It was a loooong hospital stay. After a couple weeks, it felt like the hospital was our second home. Michael and I split out time between the hospital and Grand-mere's house with Ella.
Towards the end of our stay in a last attempt to rule out any causes of seizures, the doctors decided to try an EEG while administer B6. Apparently some children, usually younger than 2-years-old, have seizures due to a defficientsy in B6. So, back on the EEG Sterling went, then mid EEG they administered a mega dose of B6 via IV. That afternoon we saw NO MORE SEIZURES! The next day we all held our breath, but again, NO MORE SEIZURES! The EEG results did not support a B6 deficiency, but for whatever reason, it correlated with the end of the seizures. After 2 days of no seizures we began talking about going home. We were still all holding our breath, and not totally sure what the magic bullet had been that caused this reprieve in seizures, but whatever it was, we'd take it.
After being released from the hospital, it was off to Florence we went! We knew we'd be checking back into the hospital in a week to start the ketogenic diet, so we wanted to take the opportunity to celebrate two very special twin's third birthday!
Even as we hadn't seen any seizures, Sterling was very ataxic from all the medications he was on, and very weak from lack of physical activity for so long. We also couldn't be sure the seizures were gone, so he had to continue to wear his helmet when playing.
What a special birthday it was! We pulled it off with a lot of help from our new and wonderful friends in less than 2 days. Sterling was doing better, and we hoped on the road to recovery, and most importantly we were all together again...as a family.
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