Well, we've followed up with a few of Paisley's doctors in the past couple of months and have some updates. In February, Paisley's neurosurgeon released her for tummy time! (Yay! Even though she HATES it!) He said that we don't need to worry about the spinal surgery right now. He's thinking more like a few years or possibly six to seven years down the road is when we may need to take that step... it will all depend on how the bones (or lack there of) in her neck develop as she gets bigger. Basically our only issue now is just keeping her safe, making sure her neck is stable and no accidents occur. Even a simple fall can be a severe spinal injury for her. But surgery isn't today or tomorrow, and as far as I'm concerned, that's great news! However, he said that her neck can absolutely NOT be hyper-extended during her cleft palate surgery. He referred us to a wonderful plastic surgeon, to discuss our options for her cleft repair. I must say, the man knew what he was talking about, and clearly had credentials to back his work up... it was documented all over his office walls... plaque after plaque, award after award... quite the achiever. But, somewhere between his explanation of putting Paisley through several operations to get her cleft repaired and his boastful "I have over 30 years of experience" speech (if you've followed Paisley's story, I'm sure you know why that statement doesn't go over too well with me).... I decided he was not the right doctor for us. I talked to Paisley's ENT about it all and she said the hyper extension was no problem. She felt confident that she could perform the operation in one shot rather than several. Although, doing it her way means that Paisley may be anywhere from 18 months to 2 years old before she has the surgery. As a baby/toddler gets bigger, the palate sides drop in... meaning the gap of her cleft would be narrowed quite a bit, making the operation much easier and less invasive. Sure, she may be 2 and she may be majorly delayed in her speech, but I'm confident that a couple years afterwards, I won't be able to get her quiet! Plus she's enrolled in the Early Intervention program, so she get's weekly occupational therapy and we've just begun weekly speech therapy. Her new speech therapist is going to get us started on sign language as Paisley's first learned language. At first I was scared and a bit overwhelmed by the thought of learning something new, but now I'm looking forward to it. I think Paisley will be happy to have a way to tell me what she wants without having to cry before I figure it out. Not to mention if she does lose any of her hearing, (as hearing loss is prevalent with clefts and various forms of dwarfism) she'll already be ahead by knowing sign language. Luckily, Paisley has no trouble in the feeding department these days so her ST won't need to work with her on feeding. She is eating 2 to 3 jars of stage 3 baby food a day, baby cookies, puffs and anything she can manage to get off our plates! Funny thing is, she's hardly gained any weight. Her nutritionist even put her on a prescription formula with higher calories because they were concerned about her low weight gain. Hoping she gains a little weight, but not too much for her small, fragile bones. Speaking of her bones, we also visited her orthopedic doctor. Not much to report there.. just basically that she has bowed legs that may require clamps on her growth plates for a while to straighten them out a bit... again, time will tell.
It's certainly a lot to think about and keep up with and sometimes I feel like I eat, breath and sleep therapy and doctor's appointments, but I'm getting better at juggling it all. (I think) Hahaha Since my last post, we also celebrated her 1st birthday, I'll be posting a story about that soon.
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