With only two weeks left, things are still quite topsy-turvy. Present spoon - present positive reward- wait and give reinforcements only during latter half of a feed- only at the beginning - ignore - give attention - play. I'm learning this is a totally fluid thing- no pun intended! Currently at the moment LJ has come down with a fever and a raspy cough. This past Friday my email got hacked and all my files were deleted. Never a dull moment and on cue from LJ I've learned to roll with the punches.
LJ is trying so HARD. Despite still having some coughing, crying, retching episodes, his disposition is so sweet and he puts forth such a tremendous effort. It's tough to see other kids who are here dealing with a completely behavioral problem. The moms sit in the waiting room in between feeding sessions and share stories of the kicking, screaming and battles of the will. I silently think how much I would give to just have LJ even physically be able to take a bottle! The problems are so diverse here and I know my son is not the only one with the muscular limitations- a little girl C just graduated last Friday from the program and she used to have a Gtube and a Tracheotomy! This was her 3rd "camp"....Lew has a will too. I'm certain he is a fighter.
The experts have kept Lewis on a sequence of "tastes" comprising puree of squash, then puree of sweet potato then some apple juice (or cranberry is also interchangeable). He always needs some type of chin support to help his mouth close down, his lips seal with the spoon and then swallow any puree. (see video from previous post). Inevitably some food always escapes...some with projectile than others! The team has also done THE "Hyoidglottal". No kidding, the name of this chin hold is tossed around here as if it's the 21st century's dance to know! The hyoid are bones in the laryngeal area of the throat. Having the proper support there prompts the organizational pattern in order to swallow more effectively. LJ objects to this more than any other touches, yet some kids with sensory problems need the additional input. If they train me how to do it I am nervous I'll push the wrong bone and impede his airway! There's no escaping that fear thing is there? Doc still is not sure if they will keep the hyoidglottal in the game plan or whether to change it up yet again. So I won't have to worry about it for awhile.
LJ is still able to swallow some of the food, but he expels some of the food with every "taste". He has what they call an anterior-posterior swallow pattern (see article here). The key to feedings should be the placement of the spoon's bowl. The docs and therapists think he's amazing. How does he manage to spit the food out even when the puree is placed all the way at the back of the tongue? Why does it appear that some of the food is causing discomfort because it goes up his nose some times. We are going to have another Barium Swallow Study this Wednesday morning to see if it can help us with the game plan. I wouldn't say that the feeding team is disappointed with our level of progress because we are making our own little steps. At least he's not crying every time a spoon approaches his mouth! At least he is not arching backward all the time. At least we won't look back in twenty years and have asked ourselves what if we never reached this crossroad. We're a work in progress. Life is changing. That's the lesson I've learned.
LJ with the world's most patient + loving Feeding Therapist, A.M. (note: the two-way mirror in the background)
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