By the time we were celebrating a year with our girl, she had to have tubes put in her ears for chronic infections and hearing loss. After the surgery, we expected her to start making some progress with crawling and eating and sleeping and speech. We had assumed all of her delays were caused by the pressure in her head and the hearing loss. But after the surgery, although she was infection free for the first time without antibiotics, she was also not making the advances we had expected. A friend of mine suggested Early Intervention, a federal program, that had helped her premature twins who had suffered from gagging and oral aversions like Moriah. It took about a month to get assessed and then it took several visits to get told that Moriah indeed qualified for therapies. Moriah failed all of their tests except social. They commented, “she will get far with her dimples alone though.”  She definitely won over everyone with her smile and personality but I was in shock at her results. I mean I knew she had some difficulties but some babies don’t crawl, right?! I just needed help with getting her to eat, I thought.

The therapies began, physical and two types of occupational. Immediately, the tools they taught Moriah and I helped with her crawling. They were figuring out sensory and spatial challenges. It seemed that Moriah’s gentle and dainty ways were now being attributed to a hesitancy to touch things. It was and is such a process. Everyday feels like I learn something new. One day she may avoid a certain texture and the next day love it. One day she may let me come close to her with food and the next day cry and avoid anything coming near her mouth. And sleep, well that was a mystery too. She could sleep sound one night (per week maybe) and be inconsolable for unknown reasons throughout the majority of nights.

A couple of months of progress later, the physical therapist told me she would really like Moriah to see a neurologist and get a bigger picture. She wrote up this long justification about Moriah’s reflexes and recommended a referral. Our pediatrician agreed and so we scheduled the visit. I didn’t know what to expect. But it was pretty non-descript. The neurologist ordered some initial bloodwork and asked a lot of pointed questions. I immediately began to look up some of the words he used to describe Moriah’s actions and realized we were probably dealing with something much bigger than I knew.

Now God is so cool! I mean I just get so excited when I think about how He gently provided for me during this time. Everyday He put new information in front of me and in only the ways He could orchestrate.

The day after Moriah’s neurology appointment I got an email about a seminar series. I honestly never open those seminar announcements, because are not in my research area of interest, but I did that day. And then I even looked up one of the topics out of the 12 talks. As I read, I followed a trail right where God was leading me, I believe, a path to genetics and diagnosis for Moriah.

The very next day, I took Moriah to her pediatrician for a routine well visit. He spent a lot of time with us and recommended genetic testing (he didn’t refer us at this time though). He even mentioned the syndrome I had read about the day before. I went home and read more on that syndrome. In the morning on the way to work, I stopped to get gas, and you wouldn’t believe who was at the pump ahead of me in line–the researcher who was presenting on the syndrome that I had only come across in those previous two days. Without much hesitation, I jumped out of my car and introduced myself and asked him about the syndrome. He was so kind and gave me some contacts and positive feedback. As soon as I got to work, I emailed one of the contacts, the founder of the syndrome, who just happened to be two floors down from my lab. He replied immediately and asked to see my daughter the next day.