From the beginning, my pregnancy with Oliver was different than with his sister. He measured so far ahead in size that they adjusted my due date, and with that Oliver was born at 33 weeks or depending on which due date you go by 36 weeks. Either way he came into the world and was puzzling his doctors from the beginning. His lungs were not fully developed, so we struggled to eat with out the NG tube; and was put on a C-PAP machine. I truly believed at the time he was just born prematurely. Looking back now, we were lucky, Oliver only spent 15 days in the NICU. From there we were introduced to his first specialist Neurology for his brain bleed, and Ophthalmology for the cataracts that Oliver was born with. Day by day Oliver became a puzzle and the hardest part was that no one seemed to have answers or even agree. Some doctors believed he was just delayed like all premature babies, and told us he would probably catch up by his second birthday.

By the end of his first year of life, Oliver had been admitted to the hospital seven times and had already had two eye surgeries to remove his cataracts. He started OT and PT because he couldn’t hold his own head up at 6 months. He spent the first year sick constantly and losing weight, which was already a struggle on a kid with weak muscles. It felt like we were just going in circles, even with seeing 6 different specialists at the time, no one could give us any answers. I am afraid we would still be going in circles, if it wasn’t for his pediatrician. She was his biggest advocate and is the reason we were finally able to get genetic testing.

Our first appointment with genetics, was mine and probably any parents worst night mare. We hadn’t even done the testing and the doctor was telling us there was something very concerning and wrong with our son. The hardest part of the appointment was hearing that and then having to wait 6 months for results. I prayed so hard not only for good results, but for answers, I do not think there is anything harder than feeling helpless when it comes to your child. About a month and a half after Oliver’s first birthday, we finally got those results. You know it is never good when a doctor starts out by saying how sorry she is. Oliver was diagnosed with Lowe Syndrome (Oculo-Cerebro-renal (OCRL) Syndrome) and Dents disease. It was really the first time I have seen his dad cry like that in front of a stranger. At the time all we could hear was the doctor using words like terminal and renal failure; and listening to her tell us that he would probably have a short life and that if it was long it would be hard. We were told he may never walk or do anything for himself, that if he gets sick, his body might not be strong enough to fight it off which in turn will kill him. I didn’t appreciate the doctors bluntness back then, but I can honestly say I think it only made Oliver determined to prove her wrong.