I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Thursday, February 19, 2009

Feeding Clinic Appointment

We had our much anticipated feeding clinic appointment today, and while it didn't go exactly how I would have liked, it was positive.

Alex now weighs 44 pounds, 7 ounces and is 4 feet tall. That puts her in the 10th percentile for her weight and 50th percentile for her height.

We met with a team that consisted of a pediatrician, feeding therapist, nurse practitioner and nutritionist. We went thru the usual history, and then I got on to bragging about how awesome she's been doing with her eating. Well, you know how when you take you car into the shop because it's making funny noises and when you get there it runs perfectly? Yeah, kind of the same thing happened...!

For the last six months I've been feeding her Stage 2 baby foods - and she mastered those. So 2 weeks ago I graduated her to Stage 3 - more chunky foods. I guess I was a little over zealous and packed a Stage 3 Turkey with rice and carrots. So when I started to feed her it was more chunky than what I had been giving her and she was basically spitting it out. So they asked if I brought anything else, and of course, I hadn't. So they asked if I thought she would eat some applesauce, which I said probably. Yeah, you would have thought I put arsenic on her tongue because she made these horrible faces and spit it all out. "Well, what do you think she will eat" they asked....sheepishly I asked if they had any Stage 2 foods, kicking myself for not being better prepared. They leave the room again and come back with a Stage 2...of course it's the soupiest one they could find so it dribbles all out of her mouth. "Do you have any Thick-It" (a powder that thickens up food to a nectar consistency) they ask? YES, I have some right here in her back-pack. Well, perhaps I should have checked that before the appointment because it's the container that I send to school with her and of course, it was empty!! So they leave the room for the fourth time to go get some. I have a little pep talk with Alex while they're gone and when they come back they said they ran into Amber, which was Alex's therapist the two times she was enrolled in the feeding clinic - and for a little background, she was basically kicked out of the feeding program for failure to progress...but that's another story and I'm still a bit bitter about it! So they tell me that Amber's going to come in and see her and I'm thinking to myself, great, Amber's going to come in and Alex is going to make to complete liar out of me, when I want her to shine the most! I add the Thick-It and viola, she starts eating like a champ - thank you Jesus because I am literally sweating at this point!!!! Amber comes in and can't believe how big Alex has gotten (she was 3 when Amber worked with her). She watches her eat and says, absolutely she's ready for pureed food, she did some oral motor checks on her mouth and tongue and is really pleased. Everyone leaves the room and I'm so excited thinking YES, we're getting off the tube and onto the blenderized diet!!!! WRONG. The nutritionist came back in and said that Alex has only been gaining 2.3 grams a day since her last appointment (8 months ago) and expected weight gain for her age is 7.7 grams a day so because she's already at a deficit for her weight she can't wean her off the tube feedings, rather the volume has to be upped. Uggh I was so disappointed.

So the plan for right now is to take her off the baby food feedings that I do and start feeding her the blenderized recipes in place of the baby food twice a day and up her tube feedings by ounce four times a day. In a month we'll go back for a weight check and if she's gaining enough weight, we will talk about the plan for weaning her off the tube feedings. If she's not gaining, we have another clinic appointment in three months. There is a waiting list right now for outpatient feeding therapy and since she has the g-tube and is not a failure to thrive patient, it could be three months before she becomes a patient again. While I'm slightly disappointed at that, I'm ok with it at the same time. With Physical Therapy and Speech every week, and Alex going into the intensive Physical Therapy program for three hours a day, five days a week for three weeks coming up on the horizon, not adding another weekly therapy appointment into the mix is probably a good thing right now. We've come a long way without the feeding clinic so I'm confident enough to start all this on my own at home.

2 comments:

Christy said...

Donna, you had me sweating, too! I am so glad she finally ate for you. I could feel your agony! We'll talk later in more detail...

Anonymous said...

If you remember, she did the same thing the night you showed us how she ate.