I'll come right out and say it. Being the sole caretaker 24/7 for Ethan has been much harder than I imagined it would be. Those of you who were around when Evan was little and was a 'runner' will understand. Mark and I have been blessed with boys who LOVE to run away...ALL the time. Evan grew out of it by the time he was 5, but Ethan seems to cling to the whole love of running away thing. Here are a few examples:
Gotta love automatic doors...NOT!
Kennedy Krieger and Ronald McDonald House, like most places nowadays, are sprinkled with these little convenient 'handicapped accessible' door opening buttons. Ethan LOVES these because they make running away so much more fun than if he actually had to open a door. Last Friday night Ethan hit the one at the front door of RMH just as a wheelchair was coming through. Ethan squeezed between the wheelchair and the door, I did not, so by the time I caught him he was halfway down the block running with a huge grin on his face.
Last week at KKI, I was in the handicapped stall of the ladies room, doin' my business, with one hand on runner boy. I let go for a millisecond and runner boy was out the stall door, hit the button, and was running down the hall laughing all the way. I got my pants up, but not zipped or belted and ran down the hall, right into an old guy who was laughing his head off. I was mortified....
..or so I thought...
Today, I used the handy 'Family Friendly' bathroom. It is one open room, no stall, has a dang door button, but also a deadbolt. I thought I was safe....nooooooooo...the dang deadbolt is child accessible. ???? I'm on the throne and Ethan heads for the button....I'm pleading...no, no, no, Ethan please don't try that. It takes him all of 2 seconds to remember the deadbolt. I'm still....yelling now....NO ETHAN...no luck, deadbolt...OPEN...door button...PUSHED. OMG. The door opens WIDE, (no stall, remember) and at the speed of a half dead slug....slowly...oh so slooooowwwly opens WIDE, WIDE, WIDE (I'm still on the throne...Ethan is gone...hallway populated...I'm sure I'm so red, I'm purple.) and then the door closes....slowly...oh so slowly...at the speed of a half dead slug. I wasn't really sure I wanted to catch Ethan by that time.
But he's just getting me back for bringing him to feeding therapy...
I gave you an overview of therapy last week, but I don't think I mentioned how hard it is to watch. I'm in a soundproof viewing booth watching his session through a one-way mirror. His feeding therapist is in the room with 2 to 3 assistants. The therapist feeds, the assistants either enter data on a laptop or help 'block' (hold Ethan's hands when he fights or holds him when he tries to bang his head...it can get rough.)
Three quarters of the way through last Thursday's noon session, Ethan stopped screaming and fighting and went limp. I cried because, well, because I'm his mom and for some reason, it was hard, but easier to see him cry than to see him go limp. I expected him to cry, I did not expect him to go limp. Every feeding since then he has been eerily calm (limp) and he keeps his teeth clenched. When he used to fight, he would immediately spit out any food that got into his mouth, with teeth clenched, the food doesn't even get into his mouth.
Today they tried a classic dentist move where the therapist will stick a finger into his mouth along the side of his teeth until he opens his mouth. It worked at today's lunch feeding because the food (pretzel, a favorite food item) got into his mouth....progress, but he REFUSED to chew or swallow. So he sat for half an hour with the food in his mouth not chewing not swallowing. Did I mention that a pretzel is one of his absolute FAVORITE foods....can you say 'Control'?
By dinner tonight he had 'outsmarted' that technique by developing an ability to go so limp he looked like he was sleeping...with the therapist's finger in his mouth. One hour. No chews no swallows.
So no calories ingested yet this week at therapy, although I am allowed to feed him after hours. He has lost 1 to 1.5 pounds this week and we're having a team meeting tomorrow morning to discuss whether he will need an NG tube because he's very low on fluids. No carido consult or swallow study yet. His NG tube history is poor...I think he has pulled them out each time he's had them in the past.
So, that's the fun. Miss you all, bet you wish you were here...not!
Molly & Ethan