First CHOC Appointment: 7/31/13

First CHOC Appointment: 7/31/2013

Tuesday night, I packed everything up that we needed to take on our little adventure.  I got Cameron's back pack ready, full of stuff for a whole day away from home.  I got Whitney's back pack all ready, full of the usual stuff for a day away from home.  I also put lots of food and feeding supplies in a tote and a cooler.  In the morning, Wednesday, July 31, we got up early to take baths and showers and get ready to go.  I packed the car with all the stuff and the kids and then we were off around 8:30am.

I drove to a friend’s house, she was the only one who volunteered to watch Cameron for me.  I dropped him off with all his stuff and a list of instructions.  I cried driving away because I missed him.  He was only 8 months old.  This was the farthest (distance) and longest (time) I've been away from him and I was worried about him.  I cried some more until I finally said another prayer and I knew he'd be okay and that this was best.  It took about an hour to drive to CHOC.  Whitney did great in the car, she likes to sing and talk.  I was thinking about what to say to Whitney about where we were going.  I didn't want to tell her it was a doctor appointment or hospital because that would scare her and it wasn't going to be a scary appointment.  So I told her, "We are going out to eat with our friends!  There's going to be lots of nice and happy friends there to eat with.  Cameron is going to a friend’s house and we are going out to eat. I will be there and it will be fun!"  I told her that several times and it really helped her.

We got there just in time for the appointment, around 10:00am.  It's weird having to get use to another hospital parking garage.  We were greeted by one of the lady's in charge of the appointment and she walked us back after we checked in.  Whitney got nervous/anxious only a few times but she calmed down quickly.  She even did great when they took her blood pressure!  She weighed 28lbs 4oz and her height was 37 1/2 inches.  Her BMI is in the 15% range which is great for her.  

We got into our room, it was big and had little table and chairs for Whitney to eat at.  Everyone came in and introduced themselves.  GI doctor, GI nurse, GI coordinator, Occupational therapists, Speech therapists, social workers, psychologist, and nutritionists. I think there were 10 people total!  Then they went into the other room and watched us from a one way window and had a microphone on in the room so they could hear us.  I asked Whitney what she wanted to eat and she didn't really want anything.  She hadn't been feed all night or anything yet today.  So I got out some string cheese, goldfish, pretzels, graham cracker, and capri sun drinks.  She didn't want to sit at the table so I had to put her there.  Then she wanted to sit in the big chair instead of the little chair so we did that.  We pulled apart the cheese but she didn't want any.  We crushed the graham cracker and put sprinkles in it.  She didn't want to drink the juice either.  I'm just so glad that she didn't vomit!!

They came back in and we talked with the therapist.  One asked me a ton of questions while the other worked with Whitney a little and actually got her to eat a piece of goldfish cracker.  I said we do lots of positive reinforcements, like if you do this then you get that.  Example, Whitney if you take a bite then you can watch a show.  After that, the nutritionist and GI nurse came in to talk.  We talked about every formula Whitney's been on and I mentioned the blenderized diet.  They said that they like that and that if I need help doing it again then to make an appointment and talk with them about it.  I told them it was hard to get a lot of calories in it and that Whitney had problems with the amount she had to get.  They said she definitely needs more calories a day and that 5 cartons of formula is best.  Then we talked with the social worker and psychologist.  That went well and they recommend we see a psychologist to help with Whitney's anxiety.  Like they would just give me 'tool's' to help Whitney cope generally and doing that would also help in the eating area.

Then everyone came back in to tell me the results!  Everyone was so nice and they complimented me!  This didn't criticize at all!  They said that Whitney and I have a great relationship and that I'm doing a great job.  They let us know that Whitney is not ready for their program yet, but one day she will be.  She needs to be eating more food by mouth first.  They said, sure we could admit her today but we'd spend the whole time trying to get her to the table and she wouldn't be very happy.  This program is a one time deal and they want the best results, aka weaned off the feeding tube.  The insurance company pays for it because they want her tube weaned too.  CHOC is one of the best programs to do that and they have a high success rate.  They also said that Whitney is just beginning to understand what's going on and is still learning to communicate.  It's best that she grows emotionally as well before we put her in this intense program.  It all made sense and they were really nice about it.  I think that when the time is right, it will be a great help for us.  They want to re-evaluate her in 6 months!  Yay!  That gives me lots of motivation to work with her to eat a measurable volume of food or drink.

Whitney got some stickers and a stuffed animal because she did so well.  We thanked everyone and then we're on our way home!  We drove back home and got Cameron.  He was perfectly fine!  Well feed, slept, clean, and played with.  We all took a nap when we got home and had a good relaxing day.