Surgery is officially on the books for Little Man.
Putting it plainly, having an open palate means he has no roof to his mouth. When singing, or laughing, or yelling, or crying (at the top of his lungs), you can actually see all the way up into his nasal and sinus cavities.
Though he has adapted amazingly to life with an open palate, it does prove problematic in several ways: Without a roof to his mouth he cannot create any kind of vacuum or suction, which thereby hinders both his eating and his speech.
He cannot drink from a straw or a sippy cup– only from a bottle. He must lie quite prone to do so, rhythmically gnawing the extra-wide cut nipple, and using gravity to move the liquid to the back of his mouth to swallow. (Basically like shotgunning a beer. I fear his college days.) Sometimes he chokes and has even had milk funnel into his ears from the inside. His resilient adaptation, which most assuredly saved his life in the Chinese orphanage, has caused his teeth on the side that he chews with to come in visibly shifted. He favors that one side because he’s actually missing a tooth on the other, where the cleft is. Orthodontics are definitely in our future.
Eating solids is a whole other ball of wax– though he is 22 months old (And yes, I’ll be using months well into his fourth year, thankyouverymuch.) he has a diet more like that of a nine month old’s. We do a lot of pureed and soft foods, so as to prevent them from getting lodged in his cleft. If he takes too big a bite, food comes out his nose. (This is more bothersome to us than to him. The worst was avocado… can you picture it?) There have been three scarring instances where he did get more solid food stuck in his cleft and it was terrifying for all of us. It blocks his airway and obviously just plain hurts. I suspect it’s similar to the carnage Captain Crunch inflicts upon the roof of your mouth, but worse.
We are scheduled to drive to Doernbecher Children’s Hospital for his surgery in a few short weeks. We chose that hospital because of their outstanding reputation (Husband’s younger brother had an extended stay there as a teen) and their proximity to friends and family. Having grown up and resided just south of Portland until our recent move to Bozeman, we still have many dependable loved ones that we know we can rely on for help. We also recognize that this as an opportune time for well-wishers to finally meet Little Man. Friends, family, if you would like to meet New Brother while we’re in Oregon in June, message me.
I confess, I’m a bit anxious, as this is the first surgery of any kind for any of our children. We are trusting in God to guide the hands of the surgeons, calm our fears, and heal our son.
“Cast all your anxiety on Him, because He cares for you.” -1 Peter 5:7
“I will restore you to health and heal your wounds, declares the Lord.” -Jeremiah 30:17
“When my glory passes by, I will put you in a cleft in the rock and cover you with my hand until I have passed by.” -Exodus 33:22