Wednesday was Halloween. We hadn't planned on dressing Amelia up -- Nestor's not a huge fan of dressing up kids before they are part of the dressing up process. He feels it's the equivalent of dressing up your dog...anyway, the day before I started to feel the need to do something. I decided to use her own clothes (so it's not really a costume) and put a couple of the pipe cleaners I use to clean her tubing in her pigtails...and voila! She was her favorite cartoon character -- "Uniqua" from the Backyardigans! She was so adorable and kept them in all day (she had no idea they were there!).
So, yesterday, we went to St. Joseph's Feeding Clinic in lovely Paterson, NJ. We were met by a team of people: a PT, ST, and a couple Drs. We did a feeding session behind a one-way mirror, the PT came in and evaluated her. Then Dr. Eiker, the big cheese came in to give us her thoughts. This clinic is obsessed with output -- if you get my drift. They want their kids to be extraordinarily regular, and then some. The thought being that if you have a full feeling all the time, you are less likely to want to swallow and that your system could actually be producing more secretions because of a slow digestive track, blah, blah, blah. It all makes sense and it's a very different approach than we've had before. Dr. Eiker recommended that we change her food to a whey based formula -- which I explained we would be happy to do after I've gotten her new supplements (the piracetam, Toddler DHA, Vitamin E, etc) regulated. She also mentioned cutting her feedings into smaller portions and giving her more of them throughout the day -- I think my face must have gone red and irritated because she backed off of that pretty quickly. I've practically killed myself to get her onto 3 feedings daily -- and then to find a therapy schedule where she has had enough time to digest...and nap...and the therapists, who have killer schedules, can make it here...OY, NO WAY! She said we could just try changing the food first and see if it makes a difference in her secretions and digestion. Overall it was a good visit and we'll go back 3-4 weeks after we've transitioned her onto the new food. I think if we didn't have such a wonderful team thru EI, it would have been even more enlightening -- but our PT and ST are so terrific, I'm not sure that I really felt they brought something new to the table. I will say, they were very specific that we should be doing tastings with her at each meal, 5 minutes to start, and very regimented, so she knows what to expect each feeding. I've been pretty good with the tastings, but i don't necessarily do it at each meal -- I feel like she's sometimes too sleepy or cranky. Their opinion is to DO IT. Even if there's barely a drop on the underside of the spoon, just give her a flavor and not really any volume to work with. So we will.
Today we trek up to the upper west side to see our dear friends Darmia (2 1/2 years old and Amelia loves playing with her), Donna and Shawn for an early supper. And tomorrow, we head down to Lehigh in PA to see Spike and his friend for lunch. And Monday is my darling husband's birthday! I've convinced him to give Atkins a day off and we're going to venture out and find the best pizza in NYC! We'll let you know if we find it.
1 day ago