Upcoming appts

We have Physical Therapy tomorrow morning for the first time since we’ve known what we are dealing with.

Appointment with Emory Genetics team on Friday. They will be taking our blood now too apparently. Originally they did not want to bother since we both obviously have the recessive gene. Not sure what has changed.

Switched our pulmonologist to Dr Marie Brooks due to her speciality in neuro-muscular Pulmonology. Appt April 16.

Gastroenterology appt next week as well. Likely discussion on when to plan for g-tube insertion to replace the n-gtube she currently is sporting.

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Categories: Uncategorized | 3 Comments

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3 thoughts on “Upcoming appts

  1. ric

    thanksf for the updates. please let me know if i can be of any help esp if you want a break and grab something.

  2. Eyes so deep with sparkle bright
    See much further than the old
    They reach beyond her youngest days
    And grasp a jewel we cannot hold
    A brightness far beyond her age
    What wisdom does she entertain ?
    With babbles that we do not speak
    We listen…enraptured.

  3. My heart is holding you and beautiful Elie.

    Karen
    (FB’s Mothers Beyond Belief)

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