Monday, May 14, 2012

Update: 4/24 Visit to CPED

Today, we had our second visit to CPED (Center for Pediatric Eosinophilic Disorders) downtown at CHOP.  We always leave the house early, and it's a good thing, because on this particular trip, it took us nearly two hours to get there.  Aidan was a happy passenger, and he got a little nap along the way, so it wasn't too bad.

When we arrived, we headed right up to the third floor, where Allergy and Nutrition hang out.  We were fifteen minutes early, but it didn't matter - Allergy was running 90 minutes behind.  After waiting for the better part of two hours, we were finally brought back to a room.

First, we did the ever-enjoyable (enter sarcasm here) weigh (20lbs - 2.2%!!!) and measure (28 inches - 0.2%).  Aidan wasn't exactly pleasant - I wish I knew why he loathes being weighed and measured so much - but once the scale was put away, he started to chat with me, play with toys, and explore the room.

Next, the Nutritionist came in.  We like Michele - and she rightly thinks Aidan is the most adorable kid ever.  We talked a lot about how things were going with the tube and where we go next.  She agrees with us that we are in the tube business for the long haul and that the G-Tube is the best solution for us.  We are struggling with the NG Tube, and given the road that's ahead of us, we don't feel it's necessary to do this for an extended period of time before starting the (different, but still present) struggle with the G-Tube.  So she will be sending her recommendations to the GI, and I'll be following up.

After we finished speaking with Michele, the Allergist came in.  We rehashed a lot of things we've already spoken about (No, he cannot have Neocate Nutra - he's allergic.  No, he cannot have flavored Neocate, he's allergic.  Yes, we've done SPT.  Yes, we're willing to do Patch.) and discussed our future plans.  She also agrees that the G-Tube is the way to go.

We will be going back to CPED to see Allergy and Nutrition for Patch Testing toward the end of the summer, in preparation for his next food challenge, which won't be until closer to his 2nd Birthday.  We are in no rush with food, and our focus right now is on getting him healthy, seeing him gain weight, and getting our lives on track with the tube.

Not a terribly exciting update, I'm sorry to say.  But he is doing well and we are moving forward :)

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