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Not a happy camper

DixieNormous330DixieNormous330 member
in Special Needs

got DD's progress notes from her therapists and there are a lot of "little progress" and "no progress" not to mention that her oral eating has decreased since the g-tube placement (she's only getting feeds through the tube at night).

 

I'm also trying to find appropriate (and at good times) classes for her to be a part of with her baby sitter to give her more socialization during the day.

 

I'm just really disheartened right now. Feeling very beaten down and i just want to cry.

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Re: Not a happy camper

  • DixieNormous330DixieNormous330 member

    Yeah. Our sitter works with her, and I do what I can with the little time I have between getting home, attempting to feed her and getting her into bed. I get home around 6:15 and she goes to bed at 8 or there abouts.

     

    This is just one more thing that makes me hate that I can't be a part time working mom or a SAHM. I trust our sitter, but I just know that if I was home with her there would be more that could be done.

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  • zoeyandsummersmomzoeyandsummersmom member
    imageDixieNormous330:

    Yeah. Our sitter works with her, and I do what I can with the little time I have between getting home, attempting to feed her and getting her into bed. I get home around 6:15 and she goes to bed at 8 or there abouts.

     

    This is just one more thing that makes me hate that I can't be a part time working mom or a SAHM. I trust our sitter, but I just know that if I was home with her there would be more that could be done.

    I can sympathize and wanted to offer you some hugs. Eating is a constant struggle for us. We are now about 95% g-tube fed - DD gets about 1 pouch of food a day and about 4 oz of milk. We do about 3 bolus feeds a day and then we have the pump set to intervals at night to do bolus. It wasn't until we shifted to all bolus feeds that DD, made huge strides developmentally. You have to find what works best for you. 

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  • DixieNormous330DixieNormous330 member
    imagedcmetrobride:

    I can sympathize and wanted to offer you some hugs. Eating is a constant struggle for us. We are now about 95% g-tube fed - DD gets about 1 pouch of food a day and about 4 oz of milk. We do about 3 bolus feeds a day and then we have the pump set to intervals at night to do bolus. It wasn't until we shifted to all bolus feeds that DD, made huge strides developmentally. You have to find what works best for you. 

     

    Now that's an interesting thought. She get's a continuous (55-60ml) over 8-10 hours at night. Maybe we should see how two bolus feeds would work...

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  • zoeyandsummersmomzoeyandsummersmom member
    imageDixieNormous330:
    imagedcmetrobride:

    I can sympathize and wanted to offer you some hugs. Eating is a constant struggle for us. We are now about 95% g-tube fed - DD gets about 1 pouch of food a day and about 4 oz of milk. We do about 3 bolus feeds a day and then we have the pump set to intervals at night to do bolus. It wasn't until we shifted to all bolus feeds that DD, made huge strides developmentally. You have to find what works best for you. 

     

    Now that's an interesting thought. She get's a continuous (55-60ml) over 8-10 hours at night. Maybe we should see how two bolus feeds would work...

    Talk to your GI and make sure you are working with a nutritionist to determine that your DD is getting the right amount of calories. DD was only getting the bare min when we were doing PO during the day and continuous at nights. We have only started to bolus-like at night because we are trying to wean her off night feedings. 

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  • grbnikgrbnik
    I wanted to follow up with you and see how everything was going.  I completely feel you on the SAHM part- I hate that I can't do that.  Feeding is such a horrible, anxiety-prone situation on everyone in my house.  I hope that things get better!
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