Tuesday, June 18, 2013

Behavior

Abby is starting to get used to the routine of feeding school, which is both good and bad. She is talking a lot more and is comfortable with most of the therapists now, but she is a little too comfortable, if you know what I mean.  She is starting to really refuse food and thrash around in protest.  This caused her to be put in time out a total of 6 times today.  :(

She did manage to drink all of her milk and at quite a bit of food on top of it, but the behaviors aren't fun.  Abby had a big tantrum at my cousin's house on Monday...one of the worst we have had in a while.  Thankfully, my cousin's son also went through the same feeding program, so she was very gracious and understanding!

I know this is just another step in the adjustment period, and I'm glad that she is talking and eating more overall.  She'll get over this too.

I'm a little concerned that she hasn't gained any weight--in fact, she has gone down slightly since we started here.  Considering that she is now on Pediasure 1.5, which is 45 calories per ounce as opposed to 30 calories per ounce in regular Pediasure, this is an issue.  Never mind that she is eating way more than she did before.  We think that it could be because she is so active now--playing hard all day, playing hard at RMH, running around outside on the playground, walking to and from the parking garage 2x a day, walking all through the hospital 2x a day, etc.  She is definitely more active here than she is on a typical day at home.  We have a family meeting with the doctors/therapists/nutritionists on Thursday, so I am definitely going to address it then.

She hasn't begun to get any of her regular speech or PT therapies yet, so that is on my list of things to ask about tomorrow.  She hasn't even been evaluated yet for speech--to my knowledge--so I will definitely be hounding them about that.  I have to say, I really don't like not being in the "know" when it comes to her therapies.  One of us is always there for Abby's therapy and we know exactly what our therapists worked on and what we need to continue with at home.  Here, I don't even know when she is being taken for therapy, never mind how she did.  I had such high expectations for her development this summer, but those hopes are fading a bit...

Overall though, this week is definitely an improvement over last week!  Anything is better than last week!  I haven't even cried at all these two days.  :)

1 comment:

Raelyn said...

Julie....
"Abby is starting to get used to the routine of feeding school. She is talking a lot more and is comfortable with most of the therapists now.". That is great!! ;-D
"She is a little too comfortable, if you know what I mean. She is starting to really refuse food and thrash around in protest. This caused her to be put in time out a total of 6 times today.". I am sorry to read this!! Hopefully her behavior will improve!! ;)
"She did manage to drink all of her milk and ate quite a bit of food.". Good job, Abby!! ;-D
"Abby had a big tantrum at my cousin's house on Monday...one of the worst we have had in a while.". Ups and downs. Twists and turns. Like a roller coaster ride. That's no fun!! :-(
My niece--who was born with no birth defects and is healthy--was an adorable chunk until becoming mobile!! Then she began to lose most of her baby fat!! So, the very fact that Abby is more active makes perfect sense for not gaining any weight. However. Since Abby has "special needs", I would definitely consult your doctors about this!! ;)
--Hugs, Friend!!--
--Raelyn