Thursday, June 23, 2011

Day #1

Today was the first day that we with held all of Allie's tube feedings.  I was nervous because I wasn't sure how she was going to respond or if it would be a total shock to her body.  But I'm happy to report that it didn't even phase little Allie.  When she asked for a tube feeding (instead of eating), I simply told her that she isn't getting feeds right now and that she will have to eat so she has energy to play. 

I sat down with Allie this morning (and Chloe) and explained to Allie that it's time for her to start eating by her mouth now.  I explained that eating is fun and enjoyable and necessary to live.  I tried to explain the importance of eating in terms that a 3 year old can understand, however it was very hard.  Not sure if Allie understood much of it but throughout the day, I reminded her that she now needs to eat.  She kept asking me if Ms. Anna (her feeding therapist) was going to be calling to check up on her.  I told her no but we could tell Ms. Anna if you start eating like a big girl.

So, for today - here is Allie's oral intake breakdown.  This is my recollection since I didn't track absolutely everything to the T today.  I wasn't going to stop tube feedings till tomorrow but since she was doing so well with eating today, I decided to drop them today instead. 

120 cal - Eo28 Splash formula
80 cal - My little pony gummies
160 cal - 1/2 of egg salad sandwich (loaded with egg salad) she ate this at therapy
30 cal - part of string cheese - she ate this at therapy
70 cal - G0-gurt (had to be Sponge bob)
180 cal - 1/2 of a double stack from Wendy's (go Allie)  This took her all night to eat but at least I got it into her!
240 cal - Eo28 Splash (milk she drank throughout the day, after breakfast)

Amazing!!  I don't think Allie has ever consumed that many calories in a day.  This was an exceptional day for her, no doubt.  Today was draining because it was a lot of work getting all those calories into her.  There is no stopping trying to get her to eat and it's a constant, "here take a couple more bites".  It's a constant battle to keep her in her chair and to keep her interested in her food.  There is no doubt this attempt to wean Allie from the tube is going to be one of the hardest things I've done in my life.

Allie had a quick appointment this afternoon with her GI doctor.  Her weight was 27.4 pounds - WOW!!  I am still amazed at that.  I have to keep in mind that she weighed her with shoes on and she was holding her blanket - but still that's a big weight increase.  I of course will be tracking her weight at home also, I'm one of those mom's that is obsessed about every aspect of Allie's medical care. 

Today was a good day but we'll see what tomorrow brings.  We leave to go camping for the weekend but I will be tracking Allie's food & water intake very closely.  Everyone eats more than normal when their camping right?????  I'm hoping this holds true for littl Allie too!

I will update on Allie's progress when we get back from camping.

One more thing I would like to point out, Allie's calorie goal per day is 1000 - 1100. 


  1. 860!?!??! That's fantastic! Go Allie! And Go Jodi! I know this doesn't help, but the "take one more bite" thing appears to be frustratingly normal for her age too. My nephew is 3, sits at the table like he's got ants in his pants, and you have to coax him to eat the entire time. "Come on, eat another bite of ___, you need to eat 2 more ___" etc. I hope Allie pigs out while camping (surely you have smores planned, right???), and I can't wait to hear an update when you get back!

  2. HOORAY!!!! I hope she keeps it up!!!!