New mama getting healthy for her daughter with a rare geneti

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lisazags
lisazags Posts: 27 Member
in Introduce Yourself
I recently joined and am taking this weight loss journey pretty seriously- with the occasional splurge!! I recently had a baby at the end of 2010. I instantly dropped 20 of the 35 pounds I gained. Then I got stuck and am trying so hard to get the last 20 pounds OFF (40 pound weight loss total)!! She has a rare genetic disorder called Prader-Willi Syndrome, which put us into the NICU until she was a month old. (All I did was sit in the hospital and eat gross hospital food, or not eat and eat sweets to make up for all my emotions). Her genetic disorder, as an infant she struggles to eat due to low muscle tone... and as she gets older, she will never have the feeling of being full after eating. Once we got her home, it took a while to get into the swing of having a baby and getting back to normal life. I lost another 8 once I began to clean up my eating and working out more, but now its about the last 15 pounds that needs to go!!!!

My goals are to get into the best shape ever over the next 2 years so that I can show her how to live a healthy lifestyle. (She will always be on a restricted diet of 1,000-1,200 calories a day, as an adult). I struggle with this and have guilt about it all right now, but I stay positive for her knowing my husband and I will be able to give her the best life possible.

I a taking an honest look at everything I put into my mouth, even my snacking to keep me on track. I hope this will allow me to eat what I want, do it in a healthy way and see results in time!

Replies

  • LyndseyMcKnight7
    LyndseyMcKnight7 Posts: 88
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    Welcome to the site. I just joined myself. My daughter also has a rare genetic disorder called WIlliams Syndrome, which is very similar to Down Syndrome. I am familiar with Prader-Willi Syndrome and feel for your family. My daughter will always struggle to eat, she currently has a feeding tube and does not take anything orally. She had open-heart surgery in Nov of 2010 and was in the CICU for a month, where I too sat and ate nasty, greasy food. I've been dieting and trying to get healthy for her sake! Feel free to add me as a friend, I would love to talk with you!
  • hotcinnababy
    hotcinnababy Posts: 4
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    Just wanted to say hi and give you some encouragement. It sounds like you're already doing a fine job taking care of your little one. Best wishes to you.
  • godroxmysox
    godroxmysox Posts: 1,491 Member
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    This really touches my heart. I am so sorry you and your little ones have to deal with these things. I pray for a cure! Good luck with your weight loss!
  • lisazags
    lisazags Posts: 27 Member
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    Thanks for the encouragement. :flowerforyou:
  • CFAITH_WARD
    CFAITH_WARD Posts: 281 Member
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    Hello...I also am doing this for my child....He is almost 9 now and there isn't anything wrong with him but diabetes runs in my family in a big way and I want him to be healthy I had really let myself go...I think I had depressions issues but I am not allowing myself any excuses. It sounds like you are already a wonderful mom to your baby girl.....Friend me if want.
  • CaptainGordo
    CaptainGordo Posts: 4,437 Member
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    Take this as a compliment, as God saw fit to have you be as this little angel's mother, knowing that you are up to the challenge.

    God bless you and your family.
  • jansus
    jansus Posts: 58 Member
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    She is beautiful.

    My son was born at 28 weeks and had lots of health problems. I remember well the feeling that i wish I could at least look forward to his 5th birthday just to see he was alright. Well he is 23 now and luckily healthy - time goes so fast. enjoy every moment of your baby and I am sure she will thrive with your positive attitude and hopefully suport from other parents with similar problems.
  • lisazags
    lisazags Posts: 27 Member
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    EIExGordo- I totally agree with you and I do take it as a compliment. I try and lead a fairly active and healthy lifestyle to begin with and everyone I know has said, what you just said. Everyone feels that God chose us to be her parents, knowing the type of life we live and can make her life only better. There may be other developmental issues in time, and we will face those as she gets older.

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