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Help with my list of questions please? (long explination)

lstaylor73lstaylor73
in Preemies

Cameron & Evan have not progressed significantly with their eating by mouth, in fact they are doing worse than ever.  We are at the top of the waiting list to get into a 4 to 6 week feeding clinic boot camp (possibly much longer if necessary) which is M - F 8am to 4pm about an hour from our house.  The boot camp is for children of all ages with eating issues and is staffed with psychologists, GI's, teachers, and different kinds of therapists who spend the entire day working on all aspects of eating from the mechanical to the behavioral. 

I never wanted to put my kids in daycare of any kind but this seems to be unavoidable now.  What things should I be asking so that I'm better informed about how this will work, what they're exposed to, and what my responsibilities are and how involved I am in the program?  I have no idea what I need to know.  They haven't given me too much information yet, but I am having a call with the program coordinator today to discuss everything and want to have my list of questions ready.  Problem is I'm drawing a blank on what I should be asking...  Help?!!

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Re: Help with my list of questions please? (long explination)

  • preemieparentpreemieparent

    Here are my suggestions.  I hope they help (and good luck - I think something intensive like that can be very worthwhile).   Some of this may not apply or be necessary based on what you already know but hopefully it will be a start.

    1. Please give me an example of what a typical day would look like from start to finish.   When do certain things happen?  How often?

    2. What is their approach to feeding therapy?   Reduce the amount of food given to teach hunger?   Do they puree all food or slowly introduce texture as kids can handle it?  

    3. What type of feeding schedule will the kids be on - certain times for breakfast, lunch, dinner and snacks?

    4. What is our involvement as parents?   Do you start feeding them exclusively and then do we start doing it ourselves over time or right away?

    5. What type of behavorial ideas/programs/methods do you use (such as using reward tactics, distraction, time limits, food choices, etc.)

    6. Do we provide the food or do you? Do we help select what foods they will eat?

    7. How often does the team meet together to discuss progress, next steps, etc?  How often do you meet with us?

    8. Do you track calories as a way of monitoring progress once they are eating more?

    9. What activities are provided when they aren't eating?

    That's all I can think of right now.  Let me know what they say once you talk to them and might think of more :)

    Hope that helps!

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  • lstaylor73lstaylor73
    As always Debbie, you are my life saver!!! Thank you!!!  I'm calling them now.
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  • lstaylor73lstaylor73

    Here's an update from my call with the program coordinator.

    imagepreemieparent:

    1. Please give me an example of what a typical day would look like from start to finish.   When do certain things happen?  How often?  She gave me a day's rundown from checking in security in the lobby to the nurse's daily inspection (they make sure the kids are not sick for the day because so many are transplant and chemo patients) to class interaction and going home for the day.  It's six weeks 8am to 4pm and parents can wait in the parent waiting room or in observation rooms or leave for work, etc.  The kids (only 6 to 8 in a class ages 2 to 4years) are in a main activity room with typical daycare activities including outside play time and a two hour nap from 12 to 2pm. 

    2. What is their approach to feeding therapy?   Reduce the amount of food given to teach hunger?   Do they puree all food or slowly introduce texture as kids can handle it?  They do positive reinforcement therapy with a psychologist and developmental physician daily.  They do work on gradually reducing the amount of tube feeding to make them optimally hungry as well as the textures.  They create our feeding schedules and provide all the food and formula too.

    3. What type of feeding schedule will the kids be on - certain times for breakfast, lunch, dinner and snacks?  In a nutshell, eventually yes, but for starters they will work with the schedule we have until they have finished the evaluation. She said that about 90% of the kids leave the program eating mostly by mouth with limited tube feeding, while others may not be ready developmentally and they bring them back after another year. 

    4. What is our involvement as parents?   Do you start feeding them exclusively and then do we start doing it ourselves over time or right away?  I will feed them the first two sessions so they can see the behaviors and what I have been doing with them and then they take over until the 5th and 6th week when they bring me back in to train me, DH and my mother to deal with the behaviors.

    5. What type of behavorial ideas/programs/methods do you use (such as using reward tactics, distraction, time limits, food choices, etc.)  They do all of the above. 

    6. Do we provide the food or do you? Do we help select what foods they will eat?  Except for day 1 they provide everything including the formula for the pump.  (Yay for me!)

    7. How often does the team meet together to discuss progress, next steps, etc?  How often do you meet with us?  They are assigned a core team with specialists who interject when necessary at least once a week with parents reports about every other week unless more is needed.  When we go for the initial evaluation(s) we will get a tour of the facility and observe some of the sessions.

    8. Do you track calories as a way of monitoring progress once they are eating more?  Yes, the head medical director is the top GI specialist for the hospital and they take into account the calories, fluid intake trends, etc.

    9. What activities are provided when they aren't eating?  Typical daycare activities for the age range of 2yrs to 4yrs and also two outdoor recesses.  They also pull each child out of the main classroom for one on one sessions with therapists and doctors, but otherwise the boys would be together in the main room.

    The biggest issue I have right now is not whether or not to do the program, after talking to her about the way things work I realize we need to do this now.  The problem is we can't get an evaluation earlier than mid October for one baby and mid December for the other, with the class availability not until a few months later.  This is a problem because we've hit our catastrophic limit on our insurance so if we could do it before the end of this year our insurance would have to pay for the whole thing.  But if it doesn't happen until 2010 then we have to pay up to $4k to hit the limit again.  Really don't want that to happen. 

    Is there any other question you think I should ask?  I've been racking my brain to try to come up with more questions because I always feel like I'm forgetting something.

    Thanks!

     

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  • firsttogofirsttogo

    I had a pre-term, but not pre-mature baby, so I lurk here occasionally! I would call the clinic again and make a plea to them, and explain your financial situation just as you have to the board. They seem to be in the business of helping people, and not making things worse. Maybe there is something they can do to get the boys in sooner. Even if you have to send them in shifts, for us that would be better than paying our max OOP again so soon.

    I know I have no business being here, but those are my .02

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  • preemieparentpreemieparent

    Laura - that's a bummer.   I would stress to them the insurance issue that you have.  Unfortunately it probably won't make a difference because places like that are pretty limited and do the best they can with capacity, etc.  But still try just in case.  Or see if there is anyway they can do the eval and then submit the bill to start services before the end of the year.  They might be able to do some work arounds like that.

    That being said.   What are you doing now with the boys eating?  I mean - what things have you tried?   Like the reward system, etc?   I can give you some suggestions in that area based on what we have learned from Olivia and what I have read online (which is tons).    We can create our own "Online" boot camp :)

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