everything is possible... the impossible just takes a little longer

slow and steady wins the race

Friday, February 8, 2008

I had an epiphany last night

As many of you know Sam is 100% g-tube fed and except for 2 short months, has been tube fed his entire life. During those 2 months (post heart surgery and before seizures) he was doing a good job with a bottle and we started him on baby cereal. Considering the fact that Sam was born at 27 weeks, has Down syndrome and several other medical complications requiring surgeries and hospitalizations, we were thrilled that he showed little signs of oral aversion (aversions which we were told would be expected). After his open heart surgery, he finally had the stamina required to eat and he was thriving....until Infantile Spasms, but that is another story for another time.

Anyway...Last night I gave Sean cereal for the first time. Sean is almost 6months old and up until this point he has been a boob-man and has refused to take a bottle. Since it appears that I have an ample milk supply this time around, his preference for the breast feeding has not been an issue. It has actually been a nice experience and as you can see Sean is not hurting for a meal. I was slightly concerned that he would not like cereal but as it turns out he really liked it. He got excited and actually tried pulling my hand, holding a spoon loaded with rice cereal, toward his mouth. This child is brilliant!

Sean eating cereal for the first time
OMG... do you think he likes it?

And then it hit me... 
As far as making strides towards eating solids, Sam was roughly in the same place Sean is now when it became clear that he could no longer take food orally. Jump ahead 4 years and Sam is again at a good point where we can start offering him "tastes" of food.  He is no longer in danger of aspirating food into his lungs and he has a strong enough cough that he can protect his airway.  He currently is diagnosed with severe oral dysphagia... which basically means that there is nothing wrong except he lacks the coordination to move food to the back of his throat and the ability to suck, swallow and breath in the proper sequence.... he needs to re-learn how to do this from scratch.  Through my own research and working with several therapists and doctors I was under the assumption that the best thing for Sam was to try offering him "age appropriate" foods... (ie. it would be better for him emotionally and socially to just lick a french fry than it would be to eat pureed food from a jar of baby food).  Well, we have made little to no progress.  Sam is very interested and will lick tastes of food off your finger but that is about it.  Eating is quite a precise business and Sam lacks not only the fundamentals that we all learned while still infants but the notion that food goes into your mouth and then you feel full.  

So as I am attempting to feed Sean for the first time last night, a light bulb light up over my head.  An Ah-Ha moment...an epiphany if you will!   Sam knows as much about eating solids as Sean does at this point so why not teach them both at the same time???  Sam loves Sean and perhaps he will be a big motivator for his big brother.  I have decided that I will start offering Sam the same cereal that I offer Sean.  I may add some lemon juice or other strong flavor to Sam's in attempt to "wake up" his mouth but my logic is simple... Monkey See. Monkey Do.  


Katie said...

ok now I want you to post the Sam picture - I hope it works! Will this make it any easier to go out to dinner ;~)

Anonymous said...

See, Sean was brought to your family for a reason (other than to prove that contraceptives don't always work!)...he's gonna teach his big brother something!

Very cool. Can't wait to see you this weekend.

mommy besieged said...

hi there,
i accidentally stumbled upon your blog tonight... ended up reading some of your entries. i hope you keep readers posted on your eating experiment! had myself a good cry while watching the video of sam. i have a lot of friends with downs and other mental "disabilities" -some with very loving family experiences and others with terrible feelings of loneliness and rejection by their family. i'm so glad sam has you and that you have sam. what a wonderful match.