As Benjamin’s Parents
A few weeks ago I was speaking with a friend about Ben; she kept saying that he would sit up soon. Any day now. I kept saying that we hoped he would but that we could not say for sure. She didn’t understand. Of course he’ll sit up. Maybe, maybe not. It took me a minute to realize that she would not be able to comprehend Ben’s possible inability to reach that milestone. I, personally, believe that Ben will be able to sit up. And I hope he will stand. And walk. And talk. And blow kisses. But I don’t know any of this for sure.
A day in the life as one of Ben’s parents or caregivers is about trying to find routine and a system that works with a child who cannot follow a set schedule. I wanted to provide some insight into the work and effort that does into having a son with a disability.
– Ben’s overnight pump alarm goes off between 4 and 6 am. One of us gets up turns it off, adjusts his feeding tube, flushes his tube and if we’re lucky, makes sure he stays asleep.
– Ben gets medication in the morning, one orally and one that we push through his tube because it tastes disgusting. Prevacid to help control his reflux and Ferrasol to help with his iron deficiency.
– His site needs cleaning, the gauze replaced if it is bloody or mucky. This gets done again in the afternoon and in the evening.
– Ben requires constant attention and stimulation. He is consistently working on his muscle strength, motor functions and visual ability.
– We are also working on incorporating textured foods into his diet and he is currently at the level of an 8 month old.
-We bathe Ben daily to ensure his site gets a proper clean. He is just beginning to adjust to the water and beginning to feel comfortable with splashing and immersing more than just his legs.
– Ben continues to wear his braces nightly to correct his right club foot.
– He gets a second dose of Ferrasol.
– Ben is hooked up to a feeding pump every night between 10 and 11 pm. We adjust the volume according to his health and how much he eats each day; for the past two weeks he has been receiving 33 ml over an hour until he finishes an entire 8 ounce can of Pediasure Plus.
– Ben’s crib and pump have taken over our room; we are far too fearful that something may go wrong and have decided to keep him nearby. Regardless of where he sleeps, neither of us sleep well.
Long term, we have no idea what will become of our little man. We are hopeful that with commitment and dedication we’re providing Ben with the best opportunity for as regular and able life that we can. Ben’s neurological disorder is so uncommon that there is barely any documentation on it, we have no idea what to expect or what will happen. If we’re lucky Ben will live a long and amazing life; in the back of our minds and hearts, we know that this may not be the case.
A Better Breakdown
We are learning more about our beautiful son every day and want to share where he is at.
Ben was diagnosed with Ponti Cerebella Hypoplasia Type 3. His cerebellum and brain stem did not develop fully while in the womb and it’s this disorder that has been the cause of his other complications. Infant fatality rate in children diagnosed with PCN are extremely high and are most often caused by respiratory problems. Fortunately, for now, Ben’s lungs are healthy and free of concern.
PCN has caused the visual problems Ben is experiencing. He has been diagnosed with Optic Nerve Atrophy and delayed tracking ability in both his horizontal and vertical vision. Picture Swiss cheese and having to constantly look through the holes; that sums up his ability to see. Using toys and other forms of stimulation, we work on increasing his visual strength but are unsure how will help long term.
The NG tube did not work and so now Ben has a Gtube which we use for supplementing his feeding overnight. Regardless of how much he eats in the day we give him a full can of Pediasure Plus. As mentioned before we also are working on getting solids into him.
At present, his site is swollen and the skin is growing over the plate. We are working at stopping this and wanting it to heal a little better.
Arms, Legs, Trunk
We continue to work on Ben’s motor skills and muscle strength. Just recently he’s begun reaching for things with two hands and clasping objects between them. He is also getting better at sitting up and seems close to getting it. We have ordered a GRIP seat which holds him up and supports his trunk but enables his hands and arms to function regularly, working on his core strength. We are also looking into a support stand that will hold him in a standing position against the couch, etc, working on developing his leg strength.
Ben continues to wear his braces most nights. He has not been to the orthopaedic doctor since last May and needs a follow up appointment scheduled.
We have ongoing appointments with the feeding team, home nutrition, physical and occupational therapists and the CNIB. We hope that if we maintain contact with as many resources and supports as possible, we’ll be giving the best opportunities available.