Sunday, June 23, 2013

Family Meeting

This post has had several drafts...one was pretty venomous...one was slightly more mild, and this one was written several days after the initial contact.  For some reason, Blogger wasn't letting me publish my first two drafts.  I'm pretty sure it was God telling me to calm down and gain some perspective.  Consider this version fairly tame and edited.

We had a family meeting with Abby's therapists on Thursday to discuss Abby's progress in the feeding program.

Feeding-wise, Abby is doing really well.  She is eating a lot more volume, and is also more willing to explore different textures.  The milk intake is becoming more consistent and normalized within the meal (rather than constantly chasing after her to drink her milk!).  She is starting to gain weight and has now gained 1 1/2 pounds since she has been here.  The nutritionist changed her formula so that she is now drinking a higher calorie Pediasure.  This way, she won't have to drink so much, which is a whole lot easier!  She's still getting about 70% of her calories from Pediasure, but at least it's by mouth and not by g-tube!!!

I did share the concerns I have about the lack of the structured, language-rich environment of the playroom that was vividly described to me pre-admission.  The kids spend a lot of time watching TV or playing on the iPad while in the playroom, and that's not the best way to stimulate any child's development---delayed or not.  Note that she is basically in this room from 9-4, only to leave 3x for meals and an occasional therapy.   It's safe to say she spends at least 5 hours a day in here, which should give plenty of time for wonderful pre-school learning activities that focus on communication, fine motor, and gross motor skills.  Not so much.  It is more of a holding tank than anything else.  In a hospital that specializes in developmental delays with dozens of wonderful therapists (we really do love them!), this really troubles me.  I've been reminded that the playroom attendants are not therapists or teachers.  Yep, I'm well-aware.

I'm trying to focus on the positives of the program and make the best of the situation, but the playroom is very frustrating to me.  I'm not sure that voicing my concerns did anything but make them darken the PAIN label on Abby's chart, but oh well.  She's where she is today because I spoke up and didn't just let things happen.  And we can't afford to gain ground in the eating at the expense of other areas of development.

1 comment:

Raelyn said...

Julie....
I am currently fighting a head cold right now, and cannot work on my Life Story, so.... I'm commenting on Blogs!! ;)
Abby is eating a lot more volume, and is also more willing to explore different textures?! Well, that's good!! The milk intake is becoming more consistent and normalized within the meal?! Keep it up, Abby!! She is starting to gain weight and has now gained 1 1/2 pounds since she has been here?! Praise God!! Those are positives!! ;-D
--Hugs!!--
--Raelyn