Sep 20, 2010

Pleasing Purees

Ever since Isis was born, she's had trouble with what the professionals call the "suck, swallow, breathe reflex." Apparently being able to do at least 2 of these at the same time is quite a complex endeavor, and many of us, including kids with cerebral palsy, have trouble managing this. In order to get sprung from the NICU, Isis had to prove that she could drink all of her milk from a bottle for 24 hours. She managed this fine and we were sent home, where she immediately began having trouble with bottles, choking and gasping and the like. Nursing was less troublesome, because, I gather, it is harder for a baby to get milk from the breast than from a bottle.
By the time she was 8 months old, though, Isis was not gaining weight and things were looking grim for a number of other reasons. Her doctor finally said she was going to have to get a g-tube (a port that is surgically placed into the stomach where breast milk or formula can be poured in via a tube.) I dutifully pumped breast milk and supplemented it with rice milk because I was vehemently opposed to formula and fully committed to the benefits that only breastmilk could give her. At the time, doctors were saying this was the end of Isis eating by mouth, mainly because a medicine she was taking was causing her to have reflux (GERD) that itself caused a whole other host of side effects.
I was planning to be a Dr. Sears, attachment parenting, whole foods mom, so this news was devastating. At the time, I was studying herbal medicine with books by Susun Weed. I did not want my kids nutritional needs being met primarily by Ross Labs!
Things evened out on the GERD front, we adjusted to life with a feeding tube (which made giving the three medicines she took three times per day so much easier) and I began to research how I could naturally nourish my kid who has profound feeding disorders.

I needed food that was:
High in fiber (to combat the constipation that comes along with the spastic and floppy muscle tone fluctuations secondary to cerebral palsy)
High in fat and calories (to get her to gain weight)
Had the same vitamin and mineral content of the foods we all eat
Was soft and could somehow be pureed or ground into a texture that she could orally manage.

In the seven or so years since then, I have learned quite a bit. I am going to share what I have learned here for any parent or loved one who is embarking on this same journey. Each entry in this topic will be labeled "Pleasing Purees" so they can be easily found. I hope this information can help you and your loved ones to enjoy food. It has for my daughter who is now older, on the growth chart and (thank God) out of distress.

No comments:

Post a Comment