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".
This is him with his walker and how he looked around 3 years old. He would have a feeding tube inserted into his belly soon after and would spend the rest of his days being fed this canned goop through the feeding tube. He couldn't metabolize fats and had to be fed this sweet liquid which would then cause him to look "puffy". He got progressively weaker and you could see in his face that things were changing "mentally". It was so hard to watch that happen to your baby. He would always smile and giggle and knew who everone was, but that look in his eyes. He was tired. He went through daily sessions of physical, occupational and speech therapy and his poor little body was just exhausted. He loved everyone, especially the kids at his special needs preschool. His teachers loved him so much!!! He never did talk or walk but would just babble things like "ma ma ma" for mommy and he would bang his head on the ground for "yes" or "no". He would make these cute little sqeakes when he was excited about something and it just made us all laugh.
Brandon passed away at age 5 on St. Patricks Day of 2003, during a nap and if I had known that this "thing" he had would be fatal, I would have skipped the housework, bagged my job and just played with him all day, gone to the park, got him a dog.
We miss our "little prince" everyday and wish he were here with his little squeaks and smiles!!!
