Thursday, February 7, 2013

How do you feel?

Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within one's own body.

We first noticed James David was "sensitive" at just a few months old. He had a severe startle reflex. Any sudden or loud noise would send him into a fit of crying. This would last sometimes for hours, and he couldn't just "cry it out". He would cry as long as he was in the car. There was no laying him down until he stopped. He stayed upset until he felt comforted or distracted. He still gets this way sometimes and will sometimes cry so hard he will pass out or vomit. This would happen two or three times a day.

As he got older we noticed more and more things upset him. He did not like being around other children his age. He didn't like loud or flashy toys.He would not get his hands dirty at all. No painting, no feeding himself, no grass, no bubbles, no dirt, no play-do. To make things harder, he didn't like to snuggle. I had to find new ways to comfort him. A pillow on my chest for him to lay his head on, patting his bottom, and Sesame Street on the TV. As you can imagine, this scenario was not always available, especially in public. We learned to accommodate James David's emotional needs as best we could, but I felt I was failing him.

Everyday we were faced with multiple bouts of hysteria. We stopped going in public to avoid meltdowns. We were up several times a night, and I just didn't know how to help my son. Then a friend recommended I research SPD, and research I did. James David fit so many of the symptoms, that I felt like a light went off in my mind! I mentioned it to his Occupational Therapist and she agreed. Although James David isn't old enough to officially be diagnosed with SPD, we started treating him for it anyways.

Treatment is brushing. Brushing is just that. We take a special brush and brush down his arms, legs, and back every diaper change (approx 2 hrs). I'm not 100% sure how it works (something about stimulating nerves) but it definitely works for us! We've been doing it a few months now and my little man loves play-do, and popping bubbles! He even finger painted the other day! He plays with other children (sometimes) and he is eating so well, making messes like little boys should! We rarely have "melt-downs", maybe once or twice a week. Who knew little baby massages could change our lives drastically?

But it makes you think. That kid that's bratty at the store, maybe he's acting out because he's truly afraid. The kid that refuses to get messy, maybe they aren't stuck-up, perhaps the feeling of that something is truly painful to them. I have found I (and most people) have sensitivities. Do not judge children or people you do not know. Their reaction may be to something you can't see, feel, or understand. Not all disabilities are visible.

Wednesday, February 6, 2013

A Little Boy's Appetite

Appetite: (n) a desire to satisfy any bodily need or craving.
An appetite is a curious thing. There are many descriptions and meanings of appetites. However, it is most commonly recognized with ones desire to eat. For some reason unbeknownst to us, sometimes James David's brain doesn't register appetite or hunger. In October, after losing weight instead of gaining it I was faced with a decision: Chiari decompression (a very risky brain surgery to remove pressure from the back of his brain that is malformed and in his spinal cord by removing part of his skull and vertebra that may or may not alleviate his symptoms  or g-tube placement that also may or may not work (we had an NG tube that failed miserably). After many tears and prayers I decided on the g-tube (gastrointestinal tube )feeding tube)). Since then he has gained 8 lbs! 

It has been a long journey these last few months. We started off doing 4 feeds a day and one over night. We learned how to use all kinds of equipment. We constantly have a cooler full of formula with us. We've dealt with an oozey, crusty tummy, and learned all about tube sizes, granulated tissue, and stomach ulcers. And all these things require flip flopping different medications. Remembering tube feed times and pump alarms going off in the middle of the night has just become part of our daily routine. But it is nowhere near as hard as I thought it would be, and I feel now it was the best decision I have ever made for my son, though possibly one of the hardest as well. 
Earlier this week we were able to move down to 3 feeds! That means he's eating by mouth! Although his diet mostly consists of Vienna sausages and cheese, we have made leaps and bounds in his eating! He loves scrambled eggs and he eats all kinds of chips and breads. We've recently got him eating green beans and a blueberry! This is an enormous achievement because James David is overcoming his gag reflex and his Sensory Processing Disorder. Yup, We have a new diagnosis of SPD. ( I'll write more on that tomorrow). 

The fact that my son is eating, gaining weight, and living healthily, is something I had begun to doubt I would ever see. Most people would never be so elated over macaroni and cheese all over their child, or probably don't remember the very first time they ate a candy bar or cookie dough. To see that cute little face all stuffed with biscuit makes my heart skip a beat. The fact that they made cereal with Elmo on the box and that he snacks it all day is truly amazing! These are life for you, but they are everyday miracles for us.