We did decide to take Dovi out that night to dinner. We decided that, darn it, he was our baby, and we'd take him with us, even though he had a strange looking tube taped to his face that we really didn't 100% understand.
Once Dovi got his NG tube, things got soooo much easier. Rather than spend hours (literally) trying to get some food into him, we'd try for a bit and then give the rest of his feed through the NG tube. I once decided to spend the time and get Dovi to take all 2 ounces from his bottle. It literally took me 3 hours-and then it was time for his next feeding.
We also started the umpteen hours of OT, SLP, and PT that would begin to fill our rapidly diminishing hours of free time in the day. By the time Dovi was a few months old, we had 4 sessions every week of OT, PT, SLP, and developmental therapy. We kept very busy.
The speech therapists were at a loss. They could not figure out why he just couldn't get it together to coordinate eating. Every baby eats. Or so we thought. Dovi taught us quickly that that was not the case. Additionally, once Dovi was getting a full tummy, his then undiagnosed reflux kicked in. He spit up continuously-it got to the point that instead of using burp diapers, we used kitchen towels-they were able to hold more spit up.
But through it all, Dovi was the happiest, most content little guy. He slept beautifully (wouldn't you sleep nicely if someone fed you in your sleep? We used to get up at 3 am to give him an NG feeding-even though he didn't wake up!)
All of the metabolic testing came back negative. Aside from an abnormal EEG, they could not find anything wrong with Dovi. My pediatrician had not a clue what else to do-so she had us follow up with the neurologist.
Benjie and I took Dovi when he was about one month old to see the neurologist. He decided to do a tear production test on Dovi. You see, people with FD don't produce overflow tears (emotional tears when crying, or the tearing of the eye when, for example, you get sand in your eye). They also have diminished baseline tears (the tears that keep your eyes moist). The test involved sticking little pieces of special paper into Dovi's eyes and measuring the amount of moisture produced (the name for the test escapes me. It starts with a S). Dovi passed with flying colors. Yes, he did. So the neuro said that Dovi did not have FD, he may have some other undiagnosed illness, and told us to come back in another month to follow up. Hopefully many of his issues were from his being a tad early and everything would work itself out.
We were in that lovely grey area of "no diagnosis"
One month later I took Dovi back to the neurologist. Benjie didn't come with me-after all, we had ruled out that nasty neurological disease, so why should he take off of work?
The neurologist informed me that he had found "one more" test for that Jewish Genetic Disease, FD. It seemed that people with FD did not have a normal reaction to histamine. So he wanted to perform what is called a histamine test. Anyone who had taken their kid for allergy testing knows that I'm talking about-the "control" reaction in allergy testing? Yup, that's what they were doing. So he did this test. Benjie was not with me. It was a Friday afternoon. He did the test, looked at me, and said "Mrs. P, your son has Familial Dysautonomia". He gave me the contact information for the Dysautonomia Treatment and Evaluation Center in New York, told us to make an appointment, and sent me on my way.
But you see, I knew already in my heart of hearts that Dovi had FD. After the neurologist had mentioned FD to me in our first visit, I went to my mom's house and used her computer. She had this cool thing called the internet. I did a search (in alta vista maybe? remember it? before google took over our loves and our speech) for FD, and found the FD Foundation. I went to their website. I read about FD. I knew right then and there that Dovi had it. He had every. single. symptom. of FD. He's textbook. But for that month, I clung to the neurologist's negative diagnosis from the tear test. But I knew. C'mon. It was obvious.
And here's the thing-bizarre as it sounds, the diagnosis was comforting. No, no, being told at age 20 (today's my birthday! I'm 32!) that their child has a deadly disease is not comforting. But I always say that I can do anything with a plan (note my extreme and inappropriate use of Excel spreadsheets). Without a diagnosis, there is no plan. You flounder forward, treating issues as they come up.
But without knowing the real cause of the symptoms? There is no plan. Ask any parent of a child with special needs and no diagnosis. Half the struggle is the not knowing.
So now we had a plan.