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Tuesday, February 7, 2012

Respite Care, Shriners, Ketogenic Diet, Baby #2

Since Carter has had these recent behavioral changes, ive been trying to find all the resources that I can.  I kept hearing about respite care so I asked a social worker and they told me Utah isn't great with that.  Some states or countries actually have trained professionals that can spend time with your child for so many hours a week or month.  Other places also have group homes or other facilities where you can place your child for a time for a break or even vacation.  Utah has a very long waiting list, and the respite care is basically whoever you can find to babysit.  Eventually you can get a certain amount of money that can help you pay whoever babysits the child, whether it be family or not.  We've already had the problem of finding people that can watch Carter because they have to be trained on his medications, possible seizures and G Tube feeds.  It's not quite simple as just dropping him off somewhere.  So I'm waiting now for the paperwork from respite, which I have 90 days to complete, then he'll officially be on the waiting list.

They have a place called Friday's Children and the website is https://www.fridayskids.org/app/?page=aboutus   The facility is in Orem and can provide an evening of babysitting for special needs kids so their parents can go on a date or get a break.  While it's nice that it is available it isn't exactly convenient.  So for right now our respite care is our parents and my husband.  We've been trying to make it a priority to go on weekly dates so we can get a break, and sometimes I'll go somewhere for a few hours a week and my husband will babysit him.  While I wish there was more available to us, I'll take what I can get.  While collecting my wealth of information, we got accepted to Shriner's Hospital.  I don't know much about them but Carter's 2nd pediatrician recommended we go to see the orthopedics department.  We went and Carter had xrays done on his spine and hip bones and everything looks great.  We hope to get him in his stander again on a regular basis to keep up the good work.

One of our decisions lately has been to wean Carter off of the ketogenic diet.  For those not familiar or haven't read about it before, it's a diet designed to control seizures when medicines have failed.  Carter has been on the diet since the end of November, and while we've seen some good changes, we think all of his behavioral issues are stemming from the diet.  Whatever is in the formula has rewired his brain somehow.  It's been hard to know whether it's the terrible two's and something that would have happened anyway, or if it is for sure the diet.  We've tried several medicines to rule that out, and so now we are weaning him off the diet.  He started back up on Pediasure today again, so we'll see hopefully over the next few days some positive changes.  It's been a hard decision to make because Carter has been more aware, grabbing more, watching people more and sitting up better.  But his moodiness, not taking naps, crankiness and new movements have us worried that he isn't handling the changes well.  We've tried everything we can think of to help and so this is our next step.  While hard to make another change, it's not irreversible.  We can always go back to the diet in the future if we decide to.

Carter has been sleeping good at night (knock on wood) which has been great, although it doesn't mean I am sleeping well.  I am 28 weeks pregnant and in my last trimester.  I am hoping the last 3 months go smoothly in my pregnancy and that I don't get pupps(rash) like I did when pregnant with Carter.  I haven't gained any weight yet which is great, I hope to only gain 10-15 max.  So I'm hoping that this last while before the next big change that Carter's moods will even out and become more manageable, that his seizures won't come back, and that ill get my energy and happiness back.  Everyday is a fresh start and even if I am faking it until I make it, I hope one day soon that it will be for real.

6 comments:

  1. Heather, thanks for posting about Carter and about your life. I hope you know that I think what you are doing is amazing and incredible. :) Good luck with everything and especially with the little one on the way and the new responsibilities and joy she will bring. Love ya!

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  2. Wonderful update Heather! I love the fake it till you make it! Great phrase! Love you!

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  3. I thought his mood was getting better? Hope everything goes well with weening him off the diet! We hope the seizures stay away! You guys will definitely be in our prayers! :)
    love- krystal

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  4. i didn't know he took naps before the diet?

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  5. Hey, glad to hear you've found so many good resources for getting a hand with your little man. I hope the change in diet gets Carter back to his old self.

    Your mention of respite care made me laugh. I think Mel and I applied for that when Whit was diagnosed. Eight years later and still nothing. That must be some waiting list. :-)

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