New Revelations....

For starter's, we did not take Jaime to his stomach emptying study...for many reasons...the main one being that we did not get proper prep and direction from the Nuclear Medicine department for it. The "typical" procedure is to have the patient eat eggs and toast that have a contrast in them. Obviously, this would not be Jaime's case. Nor did the scheduler schedule this in the pediatric department...again....many things wrong with the planning of this test.

However, since we didn't go...Jaime's day was filled with therapy sessions (SP and PT). As I've mentioned in past posts, we now have a new Speech therapist. She fed Jaime his lunch today. As she was feeding him, she was taking note of his behaviors. Jaime so badly "wants" to eat...even tries to grab the spoon and gets frustrated when you go too slowly for his liking. Even though this is all so true...once the spoon actually hits his tongue, he tenses up, pulls back and even clamps down. She said that his jaw, cheeks and tongue are so incredibly tight (the left side being tighter than the right...hence the crooked smile that we think is so cute). She also said that she feels he has "sensory" issues that really need to be addressed. Both on his tongue and on his lips. She tried to put food just on his lips...he cried. Jaime had no idea that it was even there, let alone was able to move his mouth and tongue in such a way to get it off. Kind of a strange thing, who knew so much went into eating?
It's kind of sad as a parent to sit back and not be able to feed your child like a "normal" child. I remember being so sad that I couldn't give Jaime a bottle and how hard it was for him to first bottle feed. Here we are 10+ months later...I'm back to feeling the same way. Feeding is such a chore...and it's very time consuming. You have to give Jaime paced small bites. Then, there are the days that he wants NOTHING to do with food and only wants his bottles. Not only that...I'm still not convinced that Jaime knows "hunger." Seems like I feed him all day long between bottles and purees. There's no rhyme or reason to when he's fed. Usually it's 3 purees a day if he tolerates them with the last "feed" being during our family dinner. He'll almost always want to eat when we're eating, even if he's just downed a full bottle. Another reason I think he doesn't know hunger is because when he doesn't like something the therapists are doing with him, he cries, "aboo, aboo," to take a bottle break and it's the only thing that settles him down. He'll often finish the whole thing, too. Now, if he were "normal" I wouldn't give in to him just to get out of something, but as we all know, when he cries, he doesn't have much reserve (in the way of his lungs, I mean), so our options are to let him cry it out and put the O2 on him or to give him a break and let him have his bottle. It's much easier to give him a break and it's guaranteed additional calories for him, so in essence we kill to birds with one stone and it's not such a horrible thing to play his game.

Anyway, the oral sensory and tightness issues were our new revelations for today! Jaime certainly likes to keep his medical team on their toes! He's a great learning tool for them! So glad we had him for that reason alone...tee, hee! :) As for his stomach emptying study...not sure when or if we'll reschedule...you'll have to stay tuned to Jaime's World to see!

Until next time...enjoy this "Kodak Moment" (and yes, I really do have a Kodak camera) of my sweet little boy surrounded by polka dots this evening!


P.S. Oh my goodness, I nearly forgot to write this yet again...Jaime has been seen rolling over from his back to his front (5 times in the last 2 days)! Slowly, but surely he's reaching his milestones.