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Re: [Myotubular_Myopathy] Mason / Talking / Eating

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  • Betsy Grant
    Congratulations on the good news with the echo!! Betsy On Thu, Sep 25, 2008 at 9:21 AM, Scott & Staceyanne Fontana
    Message 1 of 4 , Oct 1, 2008
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      Congratulations on the good news with the echo!!
      Betsy

      On Thu, Sep 25, 2008 at 9:21 AM, Scott & Staceyanne Fontana <masonsparents@...> wrote:

      Thank you to all who expressed support for Mason during my last
      posting about him having to go into the hospital. Here is the
      latest.. his heart echo done by our local hospital showed normal
      function..however we will be doing a follow up echo perfomed by the
      cardiologist at Children's Hospital Oakland prior to his port
      placement surgery. The cardiologist also wants Mason to wear a
      harness for 24 hrs, as he has heard of some muscular dystrophy kids
      having electrical issues related to their hearts which he states can
      be easily resolved. I tend to agree with those of you who posted that
      as our kids get older, their heart rate decreases. We will find out
      when we go into the hospital Octobrer 6th.

      There were posts about our boys talking. For Mason, it is easier for
      him to try to speak when he is laying down. He spends his days in his
      wheelchair, in a chair in the living room or on the floor on a mat
      watching TV. When he was younger he wore a passy muir during the day
      and was only on the vent at night. Now that he is pretty much vent
      dependent, he can still speak as there is a leak around the trach.
      His "speech" is more babble, Mom and I understand as we are around
      him all the time. He loves to sing, and even if you can't understand
      the words, you get the tune. He loves to watch Dora and repeat the
      three places the Map tells her to go. Somtimes in the morning the
      first thing he says is "Bridge, River, Grandma's house.". His speech
      diminishes when he is sick, and really picked up when we trached. We
      believe that prior to the trach Mason was using all his energy to
      just breathe and the trach / vent have allowed him not to have to
      work as hard in that area. By no means are we saying trach your kid
      if you want to speech. To trach or not is an incredibly difficult
      decison.

      As for eating..I've shared this before..Mason has tried multiple
      commercial formulas and all have made him retchy or constipated.
      Therefore we "home blend" his food. With a nutritionist we came up
      with "Mason Meal." It has apples, bananas, pears,
      cauliflower,carrots, brocolli, squash, pork chops, peanut butter, soy
      milk, brown rice flour & polycose - YUM! He has thrived on this. The
      only problem is we had to invest in a higher end blender to make this.

      I am glad Benjamin and Regan are home. The hurricane reminded me of a
      time last January we had winds here in northern California which were
      in the 80's(category 2 hurricane), but they were just that - winds.
      They knocked our power out for 10 hrs. We used our generator for the
      first time. I don't know how you folks in Florida / Texas do it.

      We are planning on atteding the MTM Family Conference in Houston next
      July. We are stategizing the best way to get Mason there. Since
      flying is not an option, and it is about a 30 hr. drive, we are
      thinking of renting a small RV. I don't know though, have any of you
      seen the movie "RV" with Robin Williams? We look forward to seeing
      you there.


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