Monday, January 23, 2012

Intensive feeding day 24

8:30am - weigh in and measure

Up 9oz... yup, I rock!
8:45am-9:30am - Meal 1

I tried open cup drinking for the first time today.  They used a 'nosy cup' with me.
Guess what...  I rocked it!
11:45am-12:30pm - Meal 2

Ten more drinks out of the nosy cup!  I am shocking the socks off the feet of everyone watching
Socks belong on the hands anyway!
12:00pm-2:00pm - Nap time

Too excited to sleep
I need to PLAY!

I managed to skip nap time by tricking Papa!
2:15pm-2:45pm - conference with team

Mom came out with a huge smile and gave me HUGE hugs, wonder what went on in there?
2:45pm-3:30pm - Meal 3

They reduced my Pediasure by 25%.
I am now able to have 1/4 whole milk in my Pediasure again.
I am doing so good at the nosy cup that I will get to start using it during my meal time tomorrow.  (it was in trial time before my meal today)

Yup, I am that awesome!

3:45pm - head home

Gabriel, I heard you had a good day at therapy today.
Ya, it was okay...
Well, mom and dad keep talking about it... what's up.
I don't know sis, something about her meeting today.
Well shouldn't you know?
They are always throwing something at me... who knows what is next.
So you don't want to know?
Nope, I'm good.
Bro-Ther, you are crazy!  Everyone else wants to know the big news!!!
So are you going to tell everyone Gabriel?
I'm too busy...
Dang it, duct tape again...
OOOOO, me too...
Mom's notes - 
The bad... Gabriel was not thrilled to have tooth brushing show up at home, under mom's control.  I had a very difficult time but we did not have a complete breakdown.  I can't wait to take the video below to therapy tomorrow to learn what I did wrong so that we can correct it and do better tomorrow.

Review of our goals for feeding therapy -
3. We want Gabriel to be off the bottle.  Done... From the sounds of it Nosy cup will be home by Friday if all goes well!
2. We want to be able to brush Gabriel's teeth with out all of the drama.  Done... The drama is minimal compared to where it was.  We are working on this an will have it by the end of the week!!!!
1. We want Gabriel to eat.  Done... We are on purees, gritty and finally chopped foods (this exceeds the purees we thought we would end on by a LOT)! We would like to work him off the pediasure. Currently working on this...
WOW, WOW, WOW, WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I sat down in our meeting and Gabe listened in on speaker phone.  We have one goal left to meet... Caregiver training (other than parents).  WHAT, that's all?  We can not progress farther on Gabriel' eating due to his weak muscles in his jaw.  He will need to work those muscles up each day over the next few months before he is able to try solid foods.  He is will achieve open cup and tooth brushing by the end of the week and we will also be down in the amount of Pediasure Gabriel needs. UM, we are only 24 out of 40 days in treatment.  What does this mean?  Well, we are working on a schedule for training our caregivers.  Daycare has to be trained so they can feed Gabriel is 8am and 3pm meals, School has to be trained so they can feed him is 11am meal, Grandma and Papa need to be trained so Gabe and I can have a break once in a while.  We have until February 10th to get everyone trained.  If they are trained before then we are done before then.  You read that correctly WE WILL BE DONE BY FEBRUARY 10th.  Gabriel has exceeded therapy's expectations in every way.  He has come from only drinking bottle and eating once in a while to eating 5 solid meals a day in under 40 days.  He has achieved more than any patient they have had before.  Once Gabriel graduates from the program our jobs are by far from done.  I will have to take at least two more days off work to make sure everyone is comfortable with Gabriel's feeds through the day.  I will be his feeding coach and cheer team.  We have a lot of pieces to get into place but the reality is that the end is in sight and the result are AMAZING.
What does this mean long term for Gabriel?  Good question, I asked the same thing in our meeting.  They believe now that Gabriel knows the world of eating he will take off.  We will  be back on a regular basis for check-ups to see where we are at and to get the next steps.  They do not believe he will need additional therapy but if he does we will cross that bridge as we go. TEARS OF JOY!