20 April 2011

Feeding Clinic Details

Since yesterday's post, several friends have asked for more details about our plans with the Feeding Clinic.  So, I thought I'd create myself a FAQ page, of questions I think my friends would ask (or have asked) regarding our stay at the clinic. 

Why do you have to go to the Feeding Clinic?We don't have to go to the Feeding Clinic, it's elective.  However, we are requesting an admission into the Baylor Feeding Clinic since this is usually considered the next step for a child like Bennett who has demonstrated he can eat but is unable to be weaned off the g-tube without medical intervention.

Why does the program take so long?
The program is intensive.  The reason the program takes so long is because it involves radically changing the child's behavior, something that is expected to continue at home.  The first phase of the program (Phase I lasts a week or two weeks) involves observation and the beginning stages of the clinic's proven behavior model.  Parents must spend the night each night but will be not allowed to participate in eating and therapy sessions during this time.  This will allow the clinicians an opportunity to get a baseline of what behavior the child exhibits regarding feeding times without the parent present.  Then, during this time, the medical staff will begin using the behavior model of incentives for eating and ignoring the behavior for not eating.  Parents are invited back into the feeding and therapy sessions during Phase II of the program  as the parent is taught the appropriate behavior model protocol.  During Phase III, the parent is expected to run all feeding sessions with a medical staff member present.  The hope is that by this point the parent has learned the behavior model and can now transfer this to home.  During this time, Bennett will have been given a full work up to make sure there are no physical reasons for not eating.  He will also receive any therapies that he might need to faciliate better feeding sessions. 

What will you do there? 
This is a question I can't quite answer yet.  I do know that the patients there tend to all be children.  I also know that Bennett will have 4 feeding sessions (breakfast, lunch, snack and dinner) and will be given occupational, physical or speech therapy as determined by the medical team.  There are sometimes activities for the children there as well as daily rest/nap times.  Beyond that, I am not sure. 

Are you going to stay there the whole time?
Yes and no.  I will stay the entire time with Bennett.  Anytime I am allowed to be there, I will be.  During Phase I, I may be asked to leave for periods during the day but I will stay in Dallas during that time since I will stay with Bennett nightly.  Brian is going to be with us in Dallas during the first week.  His main consider will be caring for Oliver.  They will stay at the Ronald McDonald House nearby.  After that, we are hoping to have family to come in and help which will allow Brian to return to Waco to study this summer.  We will likely come back to Waco from time to time but one of us will have to stay in Dallas at any given time.  We hope to use the Ronald McDonald House as our second home until we can all come home after discharge of the program.

What are you going to do with Oliver?
Oliver can come visit Bennett in the hospital but cannot stay.  While Brian or I can spend the night in the hospital, Oliver cannot.  Our primary goal with Oliver is to keep him as close to me and Daddy as possible.  When Bennett was born, we thought it was best to keep Oliver at home (in his own bed, with his own toys, on his own schedule, etc), even if the caregiver was different.  But this time, better understanding Oliver's need to feel secure, we realize it's better to keep Oliver with myself or Brian most of the time, even if it's inconvenient or disrupts his schedule.  From his play therapy sessions, we have realized how important it is for Oliver to stay connected to his primary caregiver.  So, if I can care for him as much as possible, this is ideal.   This is why the Ronald McDonald House, our second home, will be so helpful.  Oliver needs to be able to see me daily, if possible, to give him the confidence that he is ok.

Why are you going now and not another time?
We are going now, opposed to another time for several reasons: 1.) Bennett is still very young so any significant changes in eating can easily be made, besides he wont' remember his time there.  2.) Brian is out of school and will be able to support us best during these summer months when he has the most flexibility.  3.) The Baylor Feeding Clinic is only a few hours away.  Should we move in the future, we do not want to have missed the opportunity now.

Do you need any help?
So many friends and family have asked this question.  The answer is probably but we aren't sure in what way.  Thank you for those who have offered.  As we get closer and can better identify our needs, we will ask those who have offered to help.  As in our previous situations with Bennett, we have been so thankful for those who gave sacrificially to help us in a variety of ways. 

Hope this helps answer questions!  If I'm missing one, let me know!

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