Second CHOC Appointment: 5/28/14

Second CHOC Appointment: 5/28/2014

We have been trying to get Whitney in for her re-evaluation appointment at CHOC for the feeding program since the beginning of this year, 2014.  I didn’t feel Whitney was ready before then.  She struggled a lot with no weight gain, not tolerating her feeds, and had several tests done.  Eventually, we had an appointment for March, but they had to cancel it a couple weeks before because our ins. would only cover half.  That means we would have to pay at least 3,000 dollars out of pocket!  End of March was time to renew our ins., but since me and the kids also had secondary insurance coverage, we decide to drop the other ins.  After the spring break I called CHOC to tell them that and then they got right on getting us approved.  It took a long time, about 3 weeks before we finally knew they would cover it!  SO grateful that they are covering the appointment. 

 So...Whitney had an appointment scheduled to be re-evaluated for CHOC inpatient intensive feeding program on July 9th, and I asked them to call me if they have a sooner opening.  On Friday I got a phone call from Amber at CHOC, who is in charge of scheduling. She said that they have an opening this Wednesday, May 28th for us! I was a hesitant at first because I thought it was too short notice.  But she said all we need to do is the 3 day food log.  I'm glad I asked Loma Linda for her medical records "early" because now they will get to them on time.  I told her that Whitney has been sick the last 2 weeks and she said that won't hinder their decision and they will be understanding of that.  So I said YES, we will be there!  The sooner we get in, the sooner we know if we are in or not!  I will probably be sad if we don't get in again, but I still know that they know best about whether the child is ready or not for their intense feeding therapy.  I really think she is ready though, and so I am!  I've been dreaming about this for over 2 years.  Being off the tube will provide so many benefits for Whitney and new opportunities for growth and development.  I already got a babysitter lined up to take Cameron for about 4-5 hours!

I got up around 7am to shower and get all ready.  Thomas's school started at 9am that day, so he helped me get the kids ready.  Whitney was still sleeping while he got Cameron dressed.  When she woke up she said her ears hurt.  She actually slept all night long and we both had a great sleep (for once)!!  So we put some ear drops in her ears and she didn't even complain!  By the way, we spent 4 hours at urgent care yesterday to get her diagnosed with a double ear infection and get her antibiotics and ear drops for pain as needed.  I'm so glad I got that taken care of before her appointment so that we can manage her pain and getting her feeling better.  So this morning she was feeling so good and didn't cry or complain at all!  

I packed up the car and kids and headed out around 8:15am.  I took Cameron to a babysitter's house.  Actually the same one he stayed with last time we went to CHOC, whom is now a good friend.  I tried to occupy him with breakfast but he still cried when I left.   It took about an hour to get to our appointment.  So many different freeways, the 10 to the 215, to the 91, then the 55, last the 22.  Crazy and so random!  Bit of traffic on the 91 and the 55 but not bad.  This is my third time there so I knew what I was doing.

We got all registered and checked in.  Whitney was happy to be there and not scared at all.  We got back to the room quickly.  They still had their previous patient there so they did our interview with the two feeding/occupational therapist first.  We went over Whitney's three day food log and talked about how she does at home and at therapy.  I put in the last couple days of her food intake which was pretty good, and then a previous day's intake when she wasn't sick, because yesterday she didn't eat anything (at urgent all day and she had a fever and earaches).  Even though she has been sick and hasn't felt good for the past three weeks, she felt great and happy today.  Truly an answer to our prayers!  The therapist seemed happy with her progress.   I told them that we were discharged from outpatient feeding therapy after a year because they are a short term facility but they will re-evaluate her 6 months from April.  They want Whitney to be reestablished with a feeding therapist so that she gets therapy’s before we go and so that she has someone to go back to when she is done with the program.  Even after the program (weaned or not) she will continue to need feeding therapy to help keep up her skills and improve all the time).

Then they said we could get ready to eat and that they were all going to watch us through the one way window and listen to us from the microphone hanging from the ceiling.  So I got out Whitney's princess place mat, ABC plate, rainbow cup and her snacks.  I brought whole milk, juice, apple slices, string cheese, bread, yogurt, fruit snacks, and those snapea crisps lentils tomato basil flavor.  I gave her the milk, apples, fruit snacks, and snapea crisps.  Whitney was excited to eat!  She was hungry too!  She happily started eating the snapea crisps.  She took tiny bites.  I would ask her to drink some milk and take some bites of the apples too.  Overall she ate half of a snapea crisps, two bites of apple, and a few drinks of milk.  Whitney was also singing the songs from Yo Gabba Gabba about eating!  Like the "Snacky Snack Snack Snack Snack Snack!!" song, and she rarely sings!  She also sang "There's a party in my tummy!  So yummy so yummy!"  I was so surprised she was so happy and singing and eating.  She did amazing I wasn't even expecting that!  Remember last time we did this, I had to pick her up and bring her to the table and she wasn't comfortable at all.  Everyone was very happy with her progress!   

After that, the GI Nurse and the nutritionist came in to talk with me.  We briefly went over her medical history and her feeding history for the past year (since we saw them last).  I told them about the tests we did in December and the results.  And about putting Whitney on a slow continuous drip from Jan. to April so she could gain weight.  She has transitioned to bolus feeds now and doing well.  The Nutritionist wants to start Whitney on a blenderized diet, because that has helped a lot of their patients do better in the program.  It helps the body get more use to real foods and tolerate meals better.  I’m good with that!  Even though it costs us more than using her formula, it will be fun to blend real foods for her again.  They have a Gastroenterologist Registered Dietician (GI RD) at CHOC that I can meet with to help me.  They want her to gain weight (which they know she lost about 2lbs since being sick), other than that she is adequately nourished!   Yay!  They also determined her medically safe too, but they do need cardiologist clearance first, which should be easy to get.

Afterwards, the psychologist and the social worker came in to talk.  The two therapist came and asked Whitney if she wanted to play in the other room with them.  She did, so they took her down the hall to play.  The ladies just talked to me about how Whitney is doing and how much she has improved.  They said our sensory profile was good info., but they want Whitney to take a standardized developmental evaluation, so they can see exactly what her strengths and weaknesses are.  Those tests are done by a psychologist or developmental pediatrician.  They talked a little bit about the program and how they will push the child as far as they can.  They want Whitney to have the skills to eat before the 3 week program so that we can make the most of it.  She’s still a little guarded about eating, like taking tiny bites, so we will work on that at home.  She is brave about trying new foods though so that’s great.  Even though she gags sometimes, Whitney still continues to take bites so we need to practice more.  Some children don’t get weaned off the tube from this program, but they do eat more than half of what they need so they only get tube feed at night.  My goal is to wean her off the feeding tube!  Hopefully with CHOC that will be possible for her, and I really think she can do it!  We just need that one last push of intensive feeding therapy to help her.

Whitney came back in because she needed to go potty.  After I took her, the whole team came back in to tell us the results!  The GI Nurse said that they will all tell what they think and then we will talk about dates for admission!  Yay!  They said Whitney will benefit from intensive inpatient feeding program to increase food volume and variety, improve oral motor skills, and decrease oral aversion and generalized anxiety.  This program is not only about Whitney but also about helping me and Thomas too.  I’ve been going to feeding therapy with Whitney since she was about 6 months old, and they can tell that I have lots of experience and am doing everything right.  But this will be intense feeding therapy and a ton of work for both of us.  I’ve also read tons of blogs and books about how to help a child with oral aversions eat.  They are glad I’m ready for this!  The dates we are wanting to do the feeding program is October 13-31, 2014!  Pending on insurance of course, everything else will work out great for then. 

Whitney fell asleep on our way home to get Cameron from the babysitters around 1:30pm.  Cameron was sleeping so I had to wake him up.  He was sure happy to see me and wanted to go home.  My friend has watched him for me before and he’s been to her house a few times before too.  She has a daughter in Whitney’s preschool and he plays with her too.  But after I left him there, he cried for 40mins!  He stood by the door for the first 2 hours!  I couldn’t believe it! Poor baby!  He would watch the tv but still stand by the door.  Eventually he would go play and eat just a little bit before his nap time.  We got home and went about our day like usual, but more happy!