Posted in MEDICAL, MIGUEL'S JOURNAL

The brain is an amazing thing

Miguel suffered from multiple seizures again. He had to be hospitalized because his oxygen level dropped too low and he seized in his sleep. This seizure while sleeping is something new to us. So, the doctors wanted to monitor his vitals closely.

We spent the night in the hospital with no seizures. The doctors decided to let us go home the following day. It was a relief for both me and Miguel since we weren’t able to sleep in the hospital that night.

When we came home, Miguel refused to be fed through his g-tube. I knew he didn’t want it because when I was putting his mic-key extension on, he pushed my hand away. I did it again and he responded the same way. So, I figured he didn’t want me to touch his g-tube.

I thought, he would starve. The g-tube was there because he couldn’t feed by mouth without aspirating. So, reluctantly, I tried giving him his formula through a sippy cup. He took one sip, then another and another. He didn’t stop until he finished all 250 ml! He didn’t aspirate or throw up. And just like that, we said goodbye to g-tube feeding. Just like that.

This scenario is all too familiar for me. Last year, he also had a series of seizures and he was hospitalized for three weeks. His seizures were worse that we almost lost him.  Those weeks meant very little rest because I had to make sure he didn’t get tangled up with the many wires connected to his tiny body.

But after that ordeal, when we came home, Miguel amazed us with a new skill. Days after coming home from the hospital, I saw him sitting up (which he couldn’t do before the seizures). He was sitting up unassisted. We were all amazed: his doctors and his therapists.

His pediatrician told me this is something she has never seen in her years of medical practice: seizures bringing about new skills to a developmentally delayed child. Most often than not, seizures impact cognitive abilities in a negative way. It’s either the child loses some skill or not gain any new one. Miguel’s case is certainly intriguing.

Well, it could perhaps be just a coincidence. But it could also mean one thing: the brain is such an amazing thing!

 

Posted in MIGUEL'S JOURNAL

Miguel’s 2017: In retrospect

2017 was a year of “firsts” for Miguel and our family.

February

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.

March

IMG_7793Miguel 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.

August

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.

 

October

21034355_10155567308747567_8243368482170383524_nMiguel’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.

November

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.

December

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.

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Posted in MIGUEL'S JOURNAL

Smile

We keep hoping because of our child's smile.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.

Posted in MIGUEL'S JOURNAL

Sunday’s trip to the hospital

24232636_759861987534421_4588612607799772749_nWe 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 “Sunday’s trip to the hospital”

Posted in MIGUEL'S JOURNAL

Today, we’re celebrating a victory

24201421_10155838165927567_1438621115_oThe 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 “Today, we’re celebrating a victory”

Posted in MIGUEL'S JOURNAL

Adaptive clothing

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 “Adaptive clothing”

Posted in MIGUEL'S JOURNAL

Bathtime buddy

 

 

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 “Bathtime buddy”

Posted in MIGUEL'S JOURNAL

Fighting spirit

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 “Fighting spirit”

Posted in MIGUEL'S JOURNAL

Living with microcephaly

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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 “Living with microcephaly”