So, my boys...I'm the only female in a house with five males. One is my husband, two are our sons, one is our cat and one is our dog. The "little" one is our youngest son, Culley and he is 3 years old. His brother, Finn, is almost 5.
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| Culley at 14 months |
We realized that Culley was going deaf when he was about 2 years old. I had just begun to get my feet wet again in the working world since life seemed to be calming down a bit...haha, should've known better! When I came from work, the whole family (pets included) would be waiting at the door to greet me, except Culley. He'd be playing with his trains totally oblivious of the hub-bub. This wasn't the biggest scare he'd given us. When he was 14 months old, he was taken via helicopter from the mountains where we live to the big city of Denver so they could save his life. He was 4 days into his first bout of RSV but was quickly losing the fight. After 2 1/2 weeks of being on life support, he began the slow process of recovering. We were told he'd make a complete recovery and until the following winter, we thought he had.
Over the next year we got familiar with audiograms, ABR's and hearing aids. The hearing loss was moderate to moderately severe, which we were told was correctable with the use of hearing aids. But we knew it wasn't stopping there. Less than a year after his original diagnosis, he had reached the severe to profound hearing loss level. He'd been through two pairs of hearing aids and many adjustments to help him hear as the loss progressed. He started speaking before he was 18 months but by age 2 1/2, his speech was less intelligible and no more developed, despite speech therapy. He'd developed some strange behaviors that winter like putting the top of his head on the floor when he played and grinding his teeth constantly. Those behaviors and his stalled out language development were clues for his Colorado Home Intervention Program provider that there was more going on than deafness. He was evaluated and it was confirmed that he had Sensory Processing Disorder, now he's considered Deaf Plus. Since then, occupational therapy has become a big part of his life. With the use of hearing aids, OT, and speech therapy, he was showing small and inconsistent improvement with his language development. But as his peers were acquiring language, Culley was quickly falling behind. We did try signing with him after his diagnosis but he showed no interest. As his CHIP provider once said, "he's like a deaf hearing child", meaning he's deaf but he doesn't know it.
In February 2011, he received his first cochlear implant and he was understanding speech within 4 days of activation. With the use of his implant, he's at a mild hearing loss level. With the hearing improvements, his pronunciation has improved dramatically. With lots of OT: hippotherapy, brushing, and sacrocranial massage being the most effective currently, his language is developing, though not in a typical way. He's been in a mainstream preschool for about 5 months now and he loves it. We're taking it day by day and it's finally stopped snowing here so we're all in a better mood.
I hope this blog will be about how I go through life trying to balance the challenges with the triumphs and trying to not lose sight of the big picture which is enjoying life with my boys.
