It was crazy taking care of a baby so small. Everyone called him the "Little Prince". Feedings were a bit of a challenge and he was failing to thrive. After attempting to nurse all day, he was put on a high calorie formula supplement which would be a lifesaver.
At six months of age his eyes started flicking upward, like he was looking at the inside of his eyelids. I mentioned it to his pediatrician, who said "oh, that could be seizures". Are you kidding me? Seizures? His EEG was abnormal and the day after the EEG he started having what were called "Infantile Spasms", which was like a scrunching of his whole body and odd eye movements. I just cried and called my husband at work. We saw specialists and he was put on a number of meds to control all this. It was very scary and I wish we had had some kind of support group, online support or info or ANYTHING.
He slowly got weaker but was always very happy and high spirited! His little muscles were so weak but he tried so hard to move around. He would crawl around but his neck muscles didn't have enough strength to hold up his little head and he would drag his head around. All with a big smile on his face!
He would get so skinny, by 3 years old, and started aspirating his food and liquids. He then started seeing feeding specialist and then a metabolic specialist. He was found to have a possible 'Mitochondrial" disease or a "Metabolic" issue. We never knew a name for it and they told us it was "rare".