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Eating by mouth

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  • kristin.burlage
    My son Justin is almost 6 years old, he was diagnosed with mtm1 at 4 weeks old. I have been away from this group for over 2 years. Justin is doing very well.
    Message 1 of 2 , Apr 16, 2009
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      My son Justin is almost 6 years old, he was diagnosed with mtm1 at 4 weeks old. I have been away from this group for over 2 years. Justin is doing very well. We went to Boston Childrens Hospital in april to see the lab and meet Dr Beggs and Elizabeth. We left so hopeful. I also met a few families during our visit. I had never met anybody- in person who was affected by CNM-MTM. I can't wait for the Family Conference in July. Justin is so excited to go.
      A friend of our family is studying to be a speech pathologist and is "defending" Justin's SLP program to her professors. Justin gets all of his nutrition via g-tube but he has been doing about 1tbsp of stage 2 puree off and on for a couple of years and drinks about 2oz of water through a valve straw. We are trying to increase this in hopes that Justin will one day get most if not all his nutrients by mouth. Based on how he now eats and his recent swallow study. I would like to know how many of our children can eat by mouth?
      Kristin
    • diana.manny
      Hi there Kristin!! My son Luke has XLMTM and is 2 1/2 yrs old. He has been eating by mouth since he was 2. We eat 2x s per day or whenever he asks. We
      Message 2 of 2 , Jun 24 6:48 AM
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        Hi there Kristin!! My son Luke has XLMTM and is 2 1/2 yrs old. He has been eating by mouth since he was 2. We eat 2x's per day or whenever he asks. We started off with baby food that we added a tablespoon of water to. We let Luke self feed since he seemed more interested in that. He now eats chocolate, ice cream, graham crackers, chips, any type of cracker, grapes, watermelon, candy, and even drinks from a cup. I have found that doing it everyday while his g-tube formula feedings were going has encouraged him to eat by mouth. Especially when he is hungry. I was terribly afraid at first for the risk of aspiration. I got over the fear and our speech therapist encouraged us greatly. Good Luck and happy eating!

        --- In Myotubular_Myopathy@yahoogroups.com, "kristin.burlage" <kristin.burlage@...> wrote:
        >
        > My son Justin is almost 6 years old, he was diagnosed with mtm1 at 4 weeks old. I have been away from this group for over 2 years. Justin is doing very well. We went to Boston Childrens Hospital in april to see the lab and meet Dr Beggs and Elizabeth. We left so hopeful. I also met a few families during our visit. I had never met anybody- in person who was affected by CNM-MTM. I can't wait for the Family Conference in July. Justin is so excited to go.
        > A friend of our family is studying to be a speech pathologist and is "defending" Justin's SLP program to her professors. Justin gets all of his nutrition via g-tube but he has been doing about 1tbsp of stage 2 puree off and on for a couple of years and drinks about 2oz of water through a valve straw. We are trying to increase this in hopes that Justin will one day get most if not all his nutrients by mouth. Based on how he now eats and his recent swallow study. I would like to know how many of our children can eat by mouth?
        > Kristin
        >
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