Monday, March 31, 2014

Q & A





Today we toured the facility that J will be living in for the next month while he undergoes intensive feeding therapy . We got most of our questions answered, and it occurred to me that I have been getting a lot of the same questions from folks, so it's time to answer some of YOUR questions.  Here goes:



People with CF need a high calorie (at age 4, J needs as many calories as an adult man), high fat, high protein, and high salt diet. Because you can't just convince a baby or toddler to eat thousands more calories after they're full, Jacks had his G Tube placed when he was 15 months old.  He gets an extra 1400 calories every night to help him grow and stay strong.  A higher body weight for him means an increased ability to fight infection and a higher lung function.  Yes, he still eats by mouth.  But not much any more.  Because he hasn't HAD to have the same oral sensory and motor experiences as other kids, he has slowly, at times, imperceptibly, stopped eating different textures, taking smaller and smaller bites, and progressed to sometimes just not eating AT ALL.  Other factors in oral aversions can include things like the fact that he threw up for almost a solid month between November and December.  Sometimes his meds might make things taste funny, or his sinus problems mean he can't taste well at all, or doing his vest made his belly feel rumbly.   There are a lot of factors, a lot of possibilities.  We can't rightly nail them down individually, but as a whole, they've pushed him into a cycle that makes your average picky eater look like Kobayashi next to him.   



So what do we do? We go to feeding therapy. Behavior modification.  We have chosen to follow the recommendation that Jackson move in to a children's rehab facility that specializes in this kind of problem and has VERY high rates of success.  He will stay for a month, working with a speech/feeding therapist, Occupational therapist, physical therapist, and behavioral psychologist, in addition to a supervising physician.  He will do actual mealtime therapy 4 times a day, for the duration of his stay. We will learn new tactics to cope with  his aversions and encourage better eating habits.  We will meet with the whole team every week to discuss progress, goals, plans, and any hitch in the gitalong.   .

We are lucky to have family and friends willing to fly, drive, call, mail, fax, carrier pigeon,  and teleport into town help us.  Bet nobody teleports for you, do they? Well, don't feel bad. I might have exaggerated that part.

Other answers- yes, we would love and appreciate any help anyone is willing to give us during this '30 day challenge'.  We just don't know what we're going to need help with yet. No, this is not an urgent hospital stay like we do at Cook's. There will be no IV'sor PICC lines, and we'll administer his daily meds ourselves, just like we do at home.  No, he's not 'done' with feeding therapy at the end of this stay.  But he will have a huge jump start, and we will have the tools to keep moving forward, and with a little luck and a lot of work, THIS will not be our biggest road block anymore. And we will be way tougher when we get to the next one.  That's how it works! It doesn't get easier, you get better.   A stolen quote I can't attribute to anyone because I saw it on Facebook. 



OH!-and   PS- I didn't have to copy or paste ANY letters for this blog.  After I shared my keyboard drama in the last post, some wonderful, anonymous person came to my work and left an envelope with enough money to buy myself a spiffy new keyboard.  I can't for the life of me figure out who it was, but THANK YOU. You made me and a few of my coworkers tear up.  And I promise to both pay it forward and keep writing and raising awareness.   

3 comments:

  1. Hi Amy!
    Just want to say that you may remember Sophies journey with oral aversion? Didn't eat anything for 5 1/2 years. We did an inpatient tube wean over 10 days and I am pleased to say it worked! She has been eating for just over a year now.

    I hope the same success will be found for J.
    Big hugs for hard times. Stay strong lovely.
    X

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    1. Gemma- I can't tell you how much hearing from you has helped me feel better. I had forgotten how much you went through to get her eating. Thank you for the burst of hope and support! Xoxo

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  2. Hi Amy, I hope that you and your family could stay strong to get through this. You are strong and you have a lovely family. And what I admire most about you is your ability to look on the bright side even when its dominantly dark. Hilarious post, your family and friends are lucky to have you as well.

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