Sometimes I am asked when I realized something was going on with Firefly. How did I know? When did I know? What was "different"? I don't really have an answer to that. I think that in my gut I might have known earlier than I admitted it to myself. I have flashbacks to things that we did that tell me I MUST have known. Why else would I be in a counselor's office with my then two-year old? What about the time I ran her into my friend's office (who happened to be a pediatric physical therapist) when she was thirteen months? Didn't I get frustrated with her pediatrician when Firefly was having a horrible, falling-down tantrum in her office at twenty-one months? The pediatrician looked at her and laughed. "Wow! She has a set of lungs on her, doesn't she?" Yeah. That was helpful. Just what I was looking for. And how about the time(s) when she would run smack into a wall or door, and then just giggle and get back up? We joked about her pain tolerance.
So now, looking back, I guess there was something niggling the back of my mind for some time. I SHOULD have known. In my other life, I was a developmental specialist. I worked specifically with kids birth to three with diagnoses such as Autism, Down Syndrome, Cerebral Palsy. I definitely worked with my share of sensory kiddos, and could recognize them and help their parents with some coping strategies. Ha. I think that was God playing a joke on me.
Firefly was born full-term. She was tiny, but completely healthy. She had a bit of trouble nursing early on, and we had to go through a couple of weight checks, but all turned out fine. She was always a great eater. We joked that she could out-eat any adult we came across. She could down three hot dogs and all related accessories in a single sitting at fourteen months. And yet, she only weighed nineteen pounds at a year. (Hmm, was the over-eating a sign? Second-guessing, always).
She was very quick on her gross motor skills, sitting at 4 months, crawling at 5 and a half, followed immediately by pulling to stand and then standing alone at 9 months. She was always on the go, and always up on her toes. (Another sign, right? This one prompted the earlier mentioned trip to the PT, who told me, "It's probably sensory". Nope. Not MY kid.)
She talked early, too. By 18 months she was speaking in sentences. Her articulation was poor, which led to speech therapy. (But for articulation, not for language. No red flag here. Ha again).
Medically, though, the kid was a mess. She is always "the exception to the rule". She always had a cough, a bad one, one that she choked herself on. At two months she had her first bout with RSV, and ended up with an asthma diagnosis. Her many ear infections led to three sets of ear tubes, the first at 8 months, one lost set of tonsils, and two rounds of taking adenoids out. (Did you know they could grow back? Nope, me either. Apparently, there is a "small percentage" of kids where that happens. Yep. That's my kid.)
At 5 months, the pediatrician noticed that her soft spots had closed. Off we went for an X-Ray, CT scan, and appointments with a craniofacial doctor and a pediatric neurosurgeon. (Was it the X-ray of her head that tipped the scales? Did we do this? More second guessing.)
Nothing is scarier than sitting with your sweet six month old on your lap listening to how the doctor will cut her from ear to ear and "peel the scalp back" and then--what? I don't know, couldn't tell you. Completely zoned out at that point. Did you know that in a "small percentage of kids" they actually don't need surgery to correct the skull defect? It would have been nice to know at that point that we had a child who would be the "small percentage". Thankfully, we could wait and see. She did not have to have surgery. There did not seem to be any undue pressure on her brain as she grew. (Or was there? Is THAT what led to where we are now? Hmm . . .)
Her 12 month check brought concerns with her growth. At 13 months we were having a sleep-deprived EEG to rule out seizures. Her 15 month check brought a referral to a pediatric endocrinologist. They ran a test that would definitely tell us if she was in early puberty. Guess what? After several hours in the hospital, she was in the "very small percentage" of kids who don't show definite results on this test. Really. There's a surprise.
Allergy testing, gastro testing, genetics testing. I'm pretty sure we have run the gamut of specialists. None of the physical tests could give us any answers to this child we have. She was a mystery to us physically, and her behavior was throwing us for a loop emotionally.
That's all I can do today. Next time I'll touch on what we were living with at home. This stuff is harder to re-live than I thought it would be.
To be continued . . .