Sharing Oliver's journey with family and friends has been humbling and enjoyable to say the least.
I have found support in people who were merely former acquaintances, and such loving words from strangers supporting my son and I.
I have become the author to my son's life!
Things he may not remember when he is older, he is able to look back and see how strong he was from the (early) get go.
Things such as his last appointment we had at the sleep clinic last week.
Spina bifida myelomeningocele often comes with other likely diagnosis such as hydrocephalus, clubbed feet, and Chiari malformation.
Oliver was born with all three of these.
Chiari, known as Arnold-Chiari malformation, is a condition affecting the brain which consists of downward displacement of the cerebellum through the foramen magnum.
There are four different classifications of this condition.
One common misconception is that classification four is the progressed worsening state of classification one.
All four classifications are actually unique to their own group, and have different physical properties to them.
His cerebellum resembles the shape of a banana.
The middle is being pulled downward into the cervical spine, which is the reason for the term hind-brain herniation.
Symptoms from this can include, sleep apnea, choking, trouble eating, and more.
These symptoms may occur because the cervical spine has limited space where your esophagus is located, and having some of that limited space occupied by the cerebellum creates issues with swallowing and breathing.
In January Oliver had a follow up with his neurosurgeon to make sure he was asymptomatic from his shunt and Chiari malformation.
Oliver had not experienced any trouble eating, no trouble swallowing, no snoring, etc.
Now as cute as it sounded, I knew this could either be congestion or something more serious.
So three months later, that is the reason we had this sleep study done.
The doctors want to make sure that the snoring and nightly disruptions in sleep are not being caused by obstruction of the limited breathing space that he already has.
So they hooked up my little man to all sorts of wires on his head and chest, including a nasal cannula.
Although we are still awaiting results, Oliver showed such strength were I was barely able to hold back my tears.
Sometimes when I fail to be the strong one in this relationship, Oliver manages to surprise me and actually be the one to hold my hand through it all.
Although not every update comes complete, easy or positive, it is never short of strength from my little man.
Does your child still wear nappies? If 'yes' is this to prevent accidents when out of the home environment?