It is amazing that after 12 years of feeding issues, Little Miss has been eating by mouth daily for the last two weeks! Now, this doesn’t even BEGIN to mean we are looking at discontinuing g-tube feeds. In fact, she isn’t usually eating enough at once to eliminate g-tube feeding for the respective meal.
Today we went out for lunch after church. Little Miss ordered cheese pizza. She ate two small pieces and said she was stuffed. I have found that an important part of the process is to letter her order what she wants and then be creative in helping her manage it. For instance, she loves ice cream. She wants a cone though, not a dish. As you know, when ordering ice cream at a shop, the mound of ice cream on top of the cone is HUGE! The melting begins immediately and the mess is right behind! With Little Miss’s sensory issues, ice cream dripping down her hand is not acceptable! She’d rather throw out the ice cream than deal with that. I order a dish to go with the cone. As soon as it starts to stress her out, she dumps the cone upside-down into the cup and then picks the cone back up. Most of the ice cream has stayed in the cup but enough is on the cone to lick. She is happy, there is no mess, and it encourages her in her adventure of eating!
One of the manifestations of low muscle tone and lack of coordination between the two sides of her body is that she has to concentrate very hard in order to chew her food. If she doesn’t chew well, or if she puts too much in her mouth at once, then she runs the risk of triggering her gag reflex. Food gets “stuck” on the back of her tongue and she has difficulty moving it from that spot.
Two things have helped with this: I cut her food up in tiny pieces, literally ¼ inch by ¼ inch; and, I keep a glass of ice water handy. If Little Miss seems on the verge of gagging or vomiting, I hold her glass up. The fewer words, the better so that she can stay focused on what she is doing rather than what I am saying. I also stay completely calm (or as close to that as possible on a given day!) so as to not increase her own tension level.
Success seems related to:
the family sitting down together for a meal, and
time and patience.
Even then, her desire seems to be random and unpredictable, and we have missed the gag cut-off point more than once. Yes – at restaurants. We all attempt to treat this as no big deal, covering it with napkins and asking for a new plate.
The life and times of a g-tube family, eh? This is why the following quote means so much to me:
“You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.” -Lori Borgman