Wednesday, July 21, 2010


At feeding therapy yesterday Maggie did what she's been doing with solids: she will put the food in her mouth but she doesn't swallow much of it, rather she just kind of holds it in her mouth for a minute and then spits it out. All babies do this the first few times, but it's been two weeks and she's still not eating much. The therapist concluded after watching her that it's not a muscle weakness that's causing her not to swallow (if that was the case it would be running out the sides of her mouth) but it's more that Maggie just doesn't care about food. She doesn't hate it like bottles, but she doesn't really enjoy it either. I remember ML would flap her hands in anticipation of getting apples or peas. Maggie could care less.

It goes back to the therapist thinking she just isn't motivated by hunger because eating has not been a pleasurable experience for her. Whether it is from the reflux or something else, she just doesn't enjoy food. She'll tolerate it a little, but the bottom line is that we cannot rely on solid foods to bridge the calorie gap like we were hoping they would.

So as I was leaving therapy I asked her to be frank with me about Maggie's future. She said that she doesn't believe it is something that will get better any time soon. She thinks Maggie will eat like a normal child one day, but it will take lots of feeding therapy. Her bottom line: the g- tube is probably a good idea long-term. I knew this was probably coming, but hearing this still made me tear up. After all, it's been a long, arduous struggle and for what??

After that we went to the doctor and after much discussion all agreed to have a g-tube put in Maggie. It was a hard decision but the right one I hope.

Right now I feel a little like the wind got knocked out of me and I don't know why. Last night I just wanted to go in my bathroom and close the door as to shut out all the "stuff" I'm dealing with and just lay on the cold tile floor and cry. It's a lot to take in but I really feel like this is the best thing for Maggie- her brain needs to grow and develop just like the rest of her body and this way she'll get the nourishment she needs. And won't have to stress about every ounce we are giving her and perhaps we'll even have more freedom and not be so house bound during her feeding times. I really don't know what to expect and am talking to our GI doctor today about it all. It's the same doctor that did Mary Lawrence's procedure and so I have full confidence in what he says.

There are some other things maggie's main doctor is concerned with, including the slow progress of her torticollis and is considering surgery on her neck while she is having surgery for her tube. So we have a lot of praying and thinking to do over the next few days...

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  1. Definitely praying for you and Justin!! I know that God will lead you and love on you through your decisions. I am always here if you need me!

  2. Hi,

    In case tube feeding becomes a part of your life, I wanted to let you know about the Oley Foundation. We offer free information and peer support to families with a member on home tube or IV feeding.

    We also have some information on Weaning a Child from tube feeding. There are resources in there that might be helpful for you right now. Including a list of feeding centers -- in case you are interested in a second opinion. Go to: and scroll down to the bottom of the page.

    Check out our web site at For a good overview, click on the "New to Oley" button.

    Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY