"It's a Marathon.....not a sprint."
It is so easy to get focused on the future. For me, that has always been something that consumed me. Always looking ahead. I am a worrier, I am a positive thinker, but sometimes when it comes to myself and my family the worry and need for someone to tell me what's in that "crystal ball" overcomes me. Our little family has been through so much in the past six months and it has been a true challenge for me to be mindful, live in the present, and take one day at a time.
Maybe that is why God gave me Anthony. To give me the opportunity to truly live IN the moment, enjoy each day to the fullest and stop focusing on what the future may hold.
This journey started in late October. I had noticed some different behaviors coming from Anthony (3 months old.) He was flinching, pulling his arms up and his eyes looked to the side--kind of looked like a reflex. I asked Brad, my mom and even my brother, but they all seemed to think it looked normal. As the week went on this would occasionally happen some more-I asked my friend who is a baby nurse and she again reassured me. But in my gut, I just knew it wasn't right.
The next day (Saturday) Anthony was making these movements one right after another-more in a pattern. So we called the doctor and had an appointment set for Monday. On Sunday we decided to call the on call doctor. Explained to him what we were noticing and he sent us to Strong Peds ER. Ten minutes away from the hospital in the car was Anthony's first "episode" He awoke from his nap in the car and his eye were bugging out of his body. We spent most of the day in the ER insisting on an EEG for our son. Finally, we were admitted for the night at the Golisano Children's Hospital and EEG scheduled for the morning.
On Monday November 9th Anthony was monitored on EEG, 27 probes on his little head, he was smiling through it all. He had some episodes while being monitored.
At around 4pm, a team of neurologist entered our room. They told us that what we had suspected (infantile spasms) was what is happening to Anthony. Infantile spasms are little seizures that babies between the ages of 4-8 months can experience. Sometimes they are seizures the babies grow out of, sometimes they are a result of lesions in the brain, mutations or other complications going on. They assured us that this is something that he was born with and predisposed too, assured us it isn't anything we did or didn't do.
We were happy to know that there was a name associated with what we were observing but with this news came more questions. I asked the doctors if he would have a good quality of life. They told me they couldn't answer that. Obviously, I crumbled. Nothing else they said to me mattered. I remember hearing the words autism spectrum, epilepsy, moderate to severe learning disabilities etc.
Anthony needed an MRI to rule out brain tumors, folds in the brain, any abnormalities that were causing the spasms from that end.
So Tuesday morning we would trade our tickets to Florida (yes, did I mention we were planning to surprise my brother in Florida on Tuesday?) for an MRI scan. Sending my baby off to be put on anesthesia was another weakening moment, but an hour and half later he was in my arms and finally able to nurse again. Shortly after that the same team of neurologist enters our room with SMILES on their faces--MRI looks completely NORMAL and HEALTHY!! PRAISE GOD!!!! We celebrated!!
At that point I hung on to the hope that Anthony would be in the 25% of children who walk away from an infantile spams diagnosis with NO long term effects. Hoping it would be idiopathic and no reason for why it happened. We were communicating with two families in the area who went through this and their children are perfectly healthy now. Why wouldn't that happen for us?
We were hopeful that with the ACTH Hormone we learn to inject would cease the spasms and he will continue to live a normal life.
That's what I pictured in my crystal ball anyway.
After our stay at the hospital we talked with the neurologists one last time before heading home to navigate this curve in the road on our own. As I jumped ahead in conversation to the "what ifs" the doctors reminded me....
This is not a sprint... it is a marathon.
So here we are with our sneakers laced up. Ready(or not) for the difficult hills and steep slopes this course will give us. With a huge cheering squad at our backs, we will keep our eyes on the prize....
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