For the past two months I have been struggling to write and update this blog. I think about doing it many times a day, but I just can't come up with subject matter I want to write about. The problem is, I feel as if Owen has peaked and is now heading in a direction I don't like. This summer was Owen's time to shine. He was an active member of our family and some of the sadness in our hearts was lifted. Unfortunately, since August, we have been on the decline. I blame those terrible Infantile Spasms.
The past three weeks have been trying. Owen had a cold which quickly progressed to pneumonia. It only took a week of antibiotics to clear his lungs again, but I feel like it is a foreshadowing of what lies ahead for our little guy. Last February, when he had a cold that earned him a ride on Hospice, it never once moved into his lungs. He coughed his hearty old man cough (something you need to hear to truly appreciate) and kept himself going. With his cold this time, he was listless and weaker.
This moves us to the next bump in the road we are trying to hurdle. Owen sleeps a tremendous amount. For the past week, we have been working to slowly wean some of his medications to see if we can get him to wake up. Peace and comfort are our goals, but if we can achieve them with Owen awake and responsive then that is our first choice. So far, we have only had a tiny bit of success. He is more alert, but it isn't necessarily a positive change. His alertness brings back arching, restlessness, constant spit and drool, and repetitive stiffening of his body. We also see times of calmness, cooing, and a look on his face of what we are calling 'pre-smile'. We want more of the second and less of the first.
Here is a compare and contrast look of last week, when Owen was at his full dose of medications, and this week, when we have weaned him on one medication by 5%.
Last Week: Owen and I headed to the library. I picked him up off his mat where he was happily sleeping on his tummy and carried him to the car. He stirred while I put him in his car seat, but was conked out again before I even drove out of the garage. At the library, he opened his eyes as I moved him from his car seat into his stroller, but went right back to sleep. I went in the building, returned books, and browsed for new ones for about fifteen minutes. Owen slept the entire time. Then we left, he slept, and continued to sleep through the reverse transfers until he was placed gently back on his tummy on his mat in our living room.
Today: In my never ending quest to be 'normal', I took Ellie and Owen to story time at the library on this dreary, rainy day. Owen was pretty calm and peaceful this morning so I thought it would be a manageable adventure. We had to go to the library one town over because Amesbury Public Library has their Children's Room on the second floor of the library and is not handicap accessible. Nice thinking Amesbury Public Library. Owen was awake and chatty on the ride over and amiable as I unloaded him from the car to the stroller. No automatic doors at this library, so I struggled through two sets of doors with an eager toddler, stroller carrying Owen, purse and library bag. During the story time and following craft, Owen hung in his stroller with a couple of tactile toys. He wasn't happy, but also wasn't unhappy. Just hovering a hair shy of distressed the whole time. Owen lost it after about twenty minutes. I was in the middle of picking out books with Ellie and the screaming started. By this time, Owen was drenched from neck to tummy with spit and drool. I took him out of the stroller and gave him some medications while Ellie did a few puzzles. I offered a bottle, refused. Pacifier, refused. It was quickly apparent we needed to go, so I gathered our stuff and returned him to the stroller. The breath-holding screams started, he was choking on spit, and had a little bit of blood in his mouth from biting his tongue or cheek. Amid stares, we exited the library into the pouring rain. I spent the entirety of the car ride home listening to Owen scream, fall silent as he gagged, and then scream again. I pulled a bloodied (he scratched his skin by his eye in a fit of rage), vomit covered, furious little boy from his car seat ten minutes later.
Is there no such thing as a happy medium in our life?
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