2017 was a year of “firsts” for Miguel and our family.
Miguel had his first surgery (getting his G-tube). We finally decided to get the tube because all our attempts to increase his weight through oral feeding seemed to fail. We spent two weeks in the hospital.
Miguel had his first major seizure. It was the first of a series of seizures. That first one lasted for 20 minutes which caused him to have respiratory distress. We were told he stopped breathing on his own for 40 minutes.
Miguel’s first time in the ICU because of respiratory distress and seizures. His anti-seizure medicine didn’t seem to be working in putting his seizures under control.
Miguel’s first time to be admitted to the hospital three times for a week each. We spent more days in the hospital than at home during this month. I started feeling depressed and it was my first time to feel so helpless.
Miguel’s first time to be seizure-free for a month (thanks to Topiramate!). Though he got sick with flu, he didn’t have any seizures.
Our family’s first time to experience some normalcy in our routine. Miguel’s been gaining weight steadily and he’s not had seizures for two months.
The past year truly tested our faith and conviction. But thanks to all our loving friends and spiritual family, we were able to pull through. One Bible text that guided us was what’s written on Psalm 55:22: “Throw your burden on Jehovah (God) and he will sustain you…”
We’re on to 2018. We are hoping for beautiful “firsts” this time for Miguel and our family.
Today, Miguel gave us smiles. Lots of them.
It’s been over a month now since his last seizure and a week since his last hospitalization. He’s much better now although still recovering from the flu he had recently.
Throughout those ordeals, he rarely smiled. It may be because of the discomfort he was feeling. He was not crying all the time but he just had this expressionless look in his face, sometimes with a slight grimace. In those weeks, I missed his smile and laughter. I never knew how much I would miss them.
But today, while his Dad was holding him and talking to him, he smiled. It was the kind of smile that he gives whenever he’s amused. I could then tell that he’s feeling much better.
For us parents, it is our child’s smile that keeps us going. No matter what we’re going through and no matter how helpless we feel, it is that smile which keeps us hoping. When our child smiles, it is as if he’s saying everything’s going to be alright.
For my Miguel, his smile tells me that I have to keep believing that he’s going to be fine.
We spent last night in the hospital. Miguel has been sick with fever, cough and cold for three days now. When I saw that his temperature rose to 39.8 C, I knew we had to rush him to emergency before he seizes.
At about 10:30 pm, I bundled up Miguel and we rushed him to the Children’s Hospital. On our way there, he was coughing so hard and I could tell that he had difficulty catching every breath. Continue reading
The one lesson I learned from having Miguel is appreciating little things.
Today, we’re celebrating one of Miguel’s small victories. Yes, I call them “victories” because he’s always coming out winning amidst seemingly insurmountable challenges.
Miguel has hypotonia so movements which come natural with other growing babies such as head balancing, crawling, and sitting up are difficult tasks for him. This is why when he’s able to do one of those things, we celebrate. Continue reading
I’ve recently been actively looking for support groups in Facebook and I found this grandmother of a boy with special needs. So, I joined her group as I did with the other Facebook pages I visited. What caught my attention was the story of how she was able to influence Marks & Spencer to design clothing for children with special needs. What a determined woman she is! And what a loving grandma, too!
Here is where I came across the term “adaptive clothing.” What a brilliant term, I thought. Continue reading
Just wanted to share with you Miguel’s favorite part of the day: bathtime!
It used to be a challenge for us every time he’s taking a bath but since we’ve gotten Continue reading
This morning, I woke up and saw Miguel kneeling upright and looked like he was gauging how high the side of his crib is. I was surprised to see him Continue reading
I would say that the first year was the worst with a lot of confusion, shock, anguish and tears.
We were told that Miguel has microcephaly when he was two months old. A doctor in the emergency noticed his small head and referred us to a pediatrician who confirmed that he really has microcephaly. I was sad, shocked and angry at the same time. Continue reading