We headed to the geneticist in August of 2007, hoping to learn more about Prader-Willi and our chances of having more children with this syndrome. After a complete physical and observation, the geneticist commented that she didn’t think Owen had Prader-Willi. She thought he had Angelman Syndrome, and wanted to run more complete genetic testing.
Owen gave up lots more blood, and a different lab did more specific testing. The couple of weeks that we had to wait were horrible. We thought we had closed the door on Angelman Syndrome, since the developmental pediatrician said it was definitely Prader-Willi. Honestly, Prader-Willi looked a lot more appealing to us.
Kids with Prader-Willi may want to eat everything…but they can talk. I had seen one of these kiddos while I taught in the high school self-contained classroom. And he wasn’t in my class. He was learning a lot. He was reading and writing. He was delayed, but thriving. He gave me hope.
The Internet can be a terrible place. All the research I did on Angelman Syndrome gave me nightmares. They dashed our hopes for our son. Terrible, negative expectations. Never talking. Never walking. Lifelong battles with seizures. It was too much. I began to shut down, knowing that this was the right diagnosis.
Owen was fascinating with water, even at that young age. He had a beautiful smile–almost always seeming happy. Those are both symptoms of Angelman Syndrome. And the geneticist confirmed it. His deletion was from the maternal 15th chromosome, not the paternal. He definitely had Angelman Syndrome.
Thankfully, she also told us that because Owen had the deletion version of this syndrome, Bryan and I did not have a high risk of having another Angel baby. It was a random deletion, not an inherited form. (Yes–there is an inherited form of Angelman Syndrome.)
Bryan and I left that appointment with mixed feelings. We felt like all of our dreams for our son had been dashed. But, we also knew that the Lord had given us Owen for a reason. It was only through our trust in Him that we began to put the pieces of our life and hopes back together.
About this time, Owen also had his g-tube and fundo surgery. His recovery was hard. When I saw him in recovery, I felt horrible. I thought I’d made the biggest mistake of my life. (Definitely wouldn’t be the last time I’d feel this way in regards to Owen’s health…) He looked awful.
|Owen shortly after surgery.
|The new G-Tube…
|Owen and me
Even in this pit of despair that we were in, the Lord was so gracious to us. He walked with us every step of the way and guided a path. We clung to Him and His promises. And slowly the fog began to clear.
Owen began recovering. With the tube feeds, he actually began gaining weight and strength. He was finally getting himself to a sitting position and holding it. We learned a new normal. One that included hooking our baby up to a pump to eat. Constantly listening for alarms, leaking tubes and food stuck on the fundo. Driving all over the country for therapies. We made it through the craziness, and settled into a routine.
At this point, we had moved to the farm. Bryan was staying home with Jayme and Owen and going to school using his GI Bill. I was working in a resource room in the grade school I had gone to as a child. Jayme was going to kindergarten in another district, with Grandma as her teacher. Bryan dutifully drove Owen to Colville twice a week for therapy. He went to Spokane once a week. We had a therapist out to the house once a week. Life was so busy.
We were thankful though. It seemed like Owen had beaten at least one set of odds. He didn’t appear to have the seizure disorder that so many Angels struggle with. Ha! We just didn’t know how to recognize a seizure when we saw one back then. It’s amazing what we can learn. Since this is getting long, Owen’s battle with seizures will be picked up in part 4.