We spoke too soon. I wrote last week about the device Sheehan had surgically placed on his head to pull his upper jaw forward, part of his cleft lip/palate repair. He wasn’t feeling much pain and wasn’t too upset about the minimal number of foods he was able to eat. We figured as time went on he’d get more and more used to the device and would eventually be able to chew soft foods.
But then we went to the orthodontist. The day before Thanksgiving we headed over to what Josiah affectionately calls, The Torture Chamber. The remaining part of Sheehan’s device needed to be attached. The doctor attached a rod to the halo screwed into his head. The rod extends down in front of Sheehan’s face where it attaches to wires connected to his upper jaw. We turn a key that pulls his jaw forward one millimeter a day.
Sheehan has a smaller mouth due to complications of his first surgery when he was a baby. So when the orthodontist attached the wires to pull his jaw forward, as well as up (to keep the jaw in place), they stretched his upper lip out at the corners of his mouth, constricting the use of his upper lip. The doctor put tubing over the wires to minimize the friction between the wires and his skin, but that wasn’t enough. They’ve been digging into his skin and have made it very painful to open his mouth at all.
The pain has been intense at some points. We played a board game the other night and Steve did something funny. We all laughed and so did Sheehan. But when Sheehan laughed, it caused so much pain that it made him cry. We had to make an effort to not laugh and eventually he had to stop playing because laughing was just too painful. We worked it out so that he took two Advil every six hours and that seemed to take care of a lot of the pain, but he still avoids any possibility of laughter.
With the wires in his mouth and his lip constriction, his speech is about 30% intelligible. We have to quiet everyone down and have him repeat what he’s saying multiple times in order to understand him.
Thank God he can use a straw (in all previous surgeries he was never allowed to use a straw). It’s about the only thing he’s able fit in his mouth. Eating mac & cheese is a long laborious process. Because he can’t move his lips much, he literally has to shove each macaroni into his mouth with a spoon.
We went back to The Torture Chamber on Monday and are due to go again this evening. The orthodontist cleaned up his mouth and had to disconnect the skin on the corner of his mouth from the wires. They were stuck. It was very painful. But eventually he put some anesthetic gel on Sheehan’s lips and he felt no pain. He was even able to eat some french fries from McDonald’s after our visit. But keeping the lip separate from the wire has been impossible for us even after the doctor showed us what to do. His skin is just so tender that even pressing the anesthetic gel on his lips causes him pain.
He’s able to eat GoGo Squeeze fruit & veggie squeeze-type packets easily, so I bought those in a bunch of varieties. Because he could eat easily from those, I went out and bought a squeeze bottle for him – the kind you use for ketchup or mustard. I cut the tip off to widen the hole and he’s been using that to eat smoothies or milk shakes.
I tried making some pea pesto over noodles – anything to get some more vegetables into his body.
What kind of mother feeds their kid barf in a bowl? Gosh, it’s hard for even me to eat this crap. He wouldn’t touch it.
We began turning the key on Saturday and have moved his jaw 4mm forward so far (heading toward 20mm). We’re going back to the surgeon tomorrow for a check up. At some point the device won’t be pulling his jaw up, but just out and the orthodontist is convinced that will alleviate some of the stress on his lips. But gosh, how long before that happens? How many bowls of slop will he have to run away from?
What’s the grossest food you’ve ever made your family?
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