Tuesday, January 24, 2012

Intensive feeding day 25

8:45am-9:30am - Meal 1

Mom fed me, I am awesome!
11:00pm-11:30pm - Meeting with social worker
Read mom's notes.  I got to play while mom was in her meeting.
11:45am-12:30pm - Meal 2

Mom tried to bush my teeth.  I was not happy but I let her.
12:00pm-2:00pm - Nap time

I sure needed a nap today!
2:45pm-3:30pm - Meal 3

I was not going to let mom brush my teeth.  I fought with her for 30 minutes before Ms. Emily came in.
I decided to open my mouth for mommy once Ms. Emily walked in.
I drank all of my drinks from my new nosy cup today!!!! That means I did not use the squeeze bottle!
3:45pm - head home

Bro-Ther, Mom said you were a stinker today.
No, Mom was the stinker!
Why do you say that?
I told mom I did not want my teeth brushed and she still did it.
What the heck do you have against tooth brushing?
It feels funky!
It feels good Bro-Ther!
Sis, we are going to have to agree to disagree!
At least you ate lots of food!
Yup, I am a rock star eater!
Mom's Notes -  
No camera's in the observation rooms.  That is the new rule.  I am not completely sure but I believe it has something to do with there being only 6-8 intensive feeding programs in the United States and not wanting to share secrets.  I could be wrong.  The second week in we were told that they had a new rule about recording devices.  The would be more than happy to burn us a DVD of the feedings but we could not independently record any part of the therapy. This is all okay with me, I will respect the hospital's wishes.  I just want to explain why I will no longer be posting pictures. 
Caregiver training. Each person will require 2-3 days of training.  They may come in in groups of 2 but the exposure to practicing is lessened as more people attend.  Therapy will create a DVD to help us further train our caregivers and I will shadow Gabriel for a couple days to continue training and offer assistance.
Supplies. What supplies don't we need.... We need supplies for Home, Daycare, School and Travel (Mimi and papa's house when not traveling)
3-4 - car cosco car seats (very specific seats) (If you know of any being sold PLEASE contact me!  It is okay if they were in an accident due to their never going to be used for a car seat)
3-4 - timers
3-4+ - sets of spoons (yup he even has to use a special spoon)
3-4+ - nosy cups
3-4+ - three section plates
3-4 - scales that weigh in grams
3-4 - Binders that include data sheets to be filled out each feeding
That is all I can think of right now but that is already hundreds of dollars worth of stuff we need in the next two weeks.  CRAZY... If it is what it takes to continue on this path we will make it happen!!!
The future. Not that we leave the kids for any length of time but we are going to have to stick very close to them just like when Gabriel was tube fed.  We will have to be there to feed Gabriel unless one of our caregivers happens to be around.  We are able to train others but the quality of training tends to not be as good as when the person goes to the hospital and learns.  I want Gabriel comfortable with who feeds him!  That is what is important.
Questions that came up from readers:
Why 5 meals each day? Gabriel is unable to get enough calories in without eating five meals a day.  His stomach is very little and it is working very hard to get though the food Gabriel is eating.  As his stomach grows so can the size of the meal.  This will  be monitored as we go back for check ups.
What is the difference between Puree, Gritty and finely chopped? When I make food on Sunday I will take pictures of each so you can 'See the difference'. You can puree almost anything.  Most fruits and vegetables can be made gritty (think regular apple sauce). Finely chopped, again can be made mainly from fruits and vegetables.  I will have to post some pictures to show what finely chopped looks like.  (Again I am not an expert at this, I am just learning as I need to create these for Gabriel)