Fine, but not really

I can't remember how long we had to wait for the results, but I know it seemed like forever. I waited by the phone,part of me wanting to get a call with a diagnosis and part of me wanting to get a call saying it had all been a dream. When I finally did hear from the geneticist, it was the answer I didn't want to hear. The tests showed nothing. "Her bones are fine, her blood is normal, her urine is as it should be and her EKG shows a perfectly beating heart. Sorry but there is nothing more we can do for you".
I sat there dumbfounded. How could nothing have shown up? My twelve month old daughter is not walking, talking or responding to her name and you're going to tell me the tests show nothing? I was frustrated beyond belief! Back to the pediatricians we would go.
This time he sent me to a neurlogical surgeon. His thinking was that maybe there was an issue with Camryn's brain that the CT scan didn't pick up on. So back to All Childrens we went. I didn't even need to steer my car we'd been there so many times. I walked into the surgeons office, my heart so heavy with despair and feeling so sorry for myself. Why was this happening? Why is it so different this time around? Why doesn't Camryn smile like Mason did? Why doesn't she pull herself up on the couch and waddle around the living room? Why doesn't she look at me when I call her name? Why did this happen to me? I sunk down in my chair and waited for our name to be called. It hadn't been five minutes before a young boy walked in with his mother and served me up a huge slice of fresh humble pie. He couldn't have been more than eleven, short and stocky with a soft, round face. His hair was cut in a buzz, which I assumed was his mothers doing for easy maintenance. It wasn't until he passed by me that I noticed the four inch scar on the side of his head. I overheard his mother say that he had a brain tumor and they were here to see if the surgery to remove it was successful or if it had returned. She was so matter of fact about it, no tears or shaken voice. She sat there smiling at her son as she spoke on her cell and I marveled at how calm she was. I suddenly felt embarrassed at my self pity. We were called  and I scooped up Camryn to carry her back. We sat in the cold, stark exam room and waited again. I looked around at all the posters of brains and the nervous system and read all the pamphlets about all the things that could go wrong with them. I probably shouldn't have done that. When the doctor walked in, I immediately felt at ease. He was very unassuming and welcomed us with a warm smile. When I told him about Camryns torticollis and delays he told me that he himself had torticollis as a child. What? He said it eventually corrected itself but that when he got tired or sick the tilt could be slightly noticed. Okay, so if this guy had torticollis and now he is a neurosurgeon, maybe there is hope for Camryn after all. We talked about Cams history, birth story, APGAR scores, the usual and I went through all the specialists we had been to and all the tests that had been run. He listened,  examined Cam and then told me he wanted to do an MRI on her head and neck to see if there was something other than torticollis causing the tilt and possibly the delays. The day of the MRI I was a nervous wreck. Because she was so young she would have to be put out for the procedure, which worried me to no end. We had to get there about two hours before the test to fill out paperwork and prep Camryn. About an hour into filling out forms that say I can't sue All Childrens if my daughter dies during the test, I noticed Camryns nose was running. Oh no! If there is ANY sign of illness, they cannot put a child under. I alerted the nurse, who paiged the doctor, who made the call to reschedule when her nose was dry. All the worrying and sleepless nights leading up to this day would have to be gone through all over again! So, two weeks later we returned to try it again. This time was a success, if you can call something like that a success. And when I got the call from the doctor with the results it was the same old story...nothing. Unbelievable!
I was starting to feel like maybe I was the one with the problem. Maybe I just needed to chill and do as the therapist and peditrician had said and just wait it out. Maybe Camryn really would be fine and be a normal three year old. Maybe I should see a neurosurgeon.
When I gave Brad the report he was just as shocked as I was. He too felt that this was more than a case of catch up. We felt so helpless but were determined not to give up. Back to the pediatricians office, another place I no longer had to steer.
This time, it was an otolarynologist, or ENT as they are more commonly known. And big surprise, it would be at All Childrens. Maybe Camryn has a hearing issue and that is why she is not responding or developing as she should. After all she was the ear infection queen and frequent ear infections can cause hearing loss so it made complete sense. Three weeks later I was sitting in a sound proofed booth, Camryn on my lap waiting to take the hearing test. Because she couldn't respond to the usual "put on these headphones and raise your finger when you hear a beep" tests, she was given one designed for babies and kids like her. Like I said it was a booth, very small and very strange. There was a cloth "bench" in the middle and on one side there was a plexiglass enclosure with a toy Big Bird holding cymbals and on the other side an enclosure with Cookie Monster blowing a horn. When we first sat down it was silent, but after a minute or two Big Bird started "playing" the cymbals and lighting up and I about had a heart attack. I would pass the hearing test, but would Cams. When Big Bird was done, silence again, and then Cookie Monster added his two cents. Again, he caught my attention, but Camryn was not consistently turning her head towards the sound. So, as we exited the booth I was not shocked to learn that this test too had been inconclusive. I think I've heard that one before.
Because we were  not able to rule out hearing as the culprit, we needed to do a more involved test called an ABR, which would require Camryn to be given a sleeping pill so she would not mess with the electrodes that would be placed on her head. The test was given in a very tiny room, lit only by the computer screen. The first dose of  sleep aid was administered and we waited the directed ten minutes for her to fall out. But ten minutes came and went. Then twenty then thirty. The tech had never experienced this with any other patient. They usually were out within the first fifteen minutes at most. But not Cams. Hadn't she heard the word on the street that Cams doesn't roll like the rest of 'em? So a second dose was given and again we sat and waited and again, the girl didn't blink. She did get lethargic, but she never went to sleep, but because we had to get this test done, I held her as still as I could while the tech performed the test, which turned out...you guessed it, normal! Her hearing was fine, however because of her constant ear infections, the ENT wanted to put tubes in. He also noticed that Camryn was "tongue twisted" meaning the little piece of skin that held her tongue to the bottom of her mouth was really short and he suggested a frontillectomy (sp?) which meant cutting that piece of skin and freeing up her tongue which may result in her being able to form words better. I wasn't thrilled about her going under anesthesia again but I was ecstatic about this whole tongue thing! I just knew that was going to make her start talking. Brad and I could hardly wait for surgery day, hoping that after our little girl would talk to us and her sister. But of course, the surgery came and went and we hung on every sound that Camryn made, straining to hear a word in it. We never did.
During this time, frustrated with traditional medicine, I began to seek out alternative ways of healing. I had heard about a kind of massage known as "craniosachral" which was known to help with torticollis. It was a really deep tissue massage at the base of the skull that worked to loosen that tight muscle and relieve the tilt. I signed Camryn up and off we went to get a rubdown. Only, this massage would be anything but relaxing. The masseuse was this older woman, no more than five feet tall and less than ninety pounds. She was the spiritual type, with crystals and beads all over the office and I just know she had a dream catcher over her bed. She was definitely out there, but I was willing to try anything. I knew Camryn was going to cry. In her young age she had been stretched, poked,and scanned more than most adults. Everytime someone touched her now she would cry. And the masseuse told me that this massage was very deep which could cause Camryn some discomfort. But it had been known to be highly successful in treating torticollis, so I held Camryns hands and let massuese "fix" my baby.
Three sessions in, and there was no improvement. Camryn screamed every time and I saw no reason to put her through it anymore. What else was left to try? Chiropractics! I had to drive to Timbuktu to find one who would work on such a young child, but I would have driven to the real Timbuktu if it meant helping my daughter. The Dr layed her on the exam table and of course, she needed an alignment (don't we all?) He was sure that a few more  sessions of twists and turns and her tilt would be history. See you next week and don't forget to pay your seventy five dollars on the way out. I walked out knowing this wasn't the answer but I went back because I had to try. But after the second time, I just wasn't convinced and I told them I would call, but I never would.
Camryn was fifteen months old now, still not walking or talking and still not responding to her name. She was getting further and further behind her peers and I didn't know what else to do. It was a very dark time.