Nope, not at all. No laughs or giggles taking place here.
I’ve talked a little bit about Daniel’s eating issues. I’ve started posts before then ended up deleting them because it always sounds like I am not grateful that he eats orally. I am. It is just stressful, for me and for Daniel.
Let me start from the beginning-
1. A child with spastic quad CP generally has issues with feeding. From what I have seem, most have feeding tubes.
2. A child with BPP (bilateral perisylvian polymicrogyria) most definitely has issues with swallowing. Some more than others.
3. We have had a barium swallow test. Daniel freaked out during it, and aspirated on some thicker mashed potatoes.
4. Daniel chokes easily on thin liquids. We must add Thick-It to his foods to make it the right consistency.
5. Daniel is 95% bottle fed. He drink a special formula with extra calories in it. He also uses Scandishakes to add additional calories, along with Duo-cal.
6. Daniel can eat baby foods “stage 1 and 2” only. These also have to be thickened, and its hit or miss on how much actually stays in his mouth.
7. There is paralysis in his mouth/jaw and he does not have a strong enough chew/bite to actually chew foods. He can eat things that melt quickly in his mouth.
All of that being said, Daniel has never choked where we have had to call 911 or do any procedures. Lonnie & I are pretty good with watching him while eating/drinking. We know the signs to watch for, we feed him slowly, and he has never had pneumonia. (knock on wood)
It has been recommended before that Daniel get a feeding tube. His swallow isn't’ strong enough. We at the time said NO WAY.
I’m not 100% sure what Lonnie’s reasoning is behind his vote of NO.
Mine – I think was because he is a good size, he is obviously getting enough calories in with all of our tricks of additional calories. Those were the main reasons. In my head I said to myself I know that one day he will need it. I am wondering if that day is coming up quicker than I want.
I know many parents feel that the feeding tube is a wonderful thing, and I am sure it is for some. Daniel loves to “eat” (mouth) things that we are eating. He wants to eat, but he can’t. It just all sucks. There is so many reasons why I don’t want him to have one, but then on the other hand there are so many reasons he should.
Will it be harder on him at 4 yrs old to have this surgery then it was when he was younger? Will he still want to eat orally? Can the tube come out eventually and he be orally fed if he can learn to chew? Am I harming him more because I haven’t gotten it done? When he goes to school full time he cant be drinking from a bottle (and yes we’ve tried Sippy cups – I have about 100 different ones in the cupboards).
Lately he hasn’t been eating well (drinking the bottle) he just doesn’t want it. He doesn't’ want ‘baby food’ he wants what we eat. So by no means is he actually getting any calories from the feedings but only from his bottle.
Where it normally takes about 45 minutes to an 1 1/2 hrs total throughout a day to feed a typical child, this is how long each session takes to feed Daniel an 8 oz. bottle. He needs 5 bottles a day to get the correct calories in. Then add on that the times we are feeding him jar foods (another hour or so) and you’ve got a lot of time spent trying to keep his calorie intake up.
Its stressful, and its frustrating. One day he’ll eat like he loves it…other days its a fight.