Hi everyone,
I am new here and am wondering if anyone in a similar situation would be willing to reassure us about this surgery and how things have/are working out for them.
My son, Spencer is 10 years old and has PMD Luekodsytrophy (a progressive degenerative disease of the brain). He is nonambulatory, nonverbal, and cant even support his own weight. He is fed continuously by a GJ tube. He also has a severe curve (more than 110 degrees).
We are scheduled for surgery next week and, honestly, even the "success" stories on this and other sites, scare me to death. It seems that recovery is so long and painful even for an otherwise healthy person, and I just dont know how little Spencer is going to fare.
Since some of the previous threads seem to indicate there are others on this forum with children like Spencer who have had this surgery and I was hoping someone might share some advice on how to get through this and what things will be like for the next few weeks, months and years? Anything encouraging would be very welcome, but we most want to know what reality will be like.
Thank you, and if you would be willing to answer specific questions, please let us know.
A very concerned Spencer's Dad.
I am new here and am wondering if anyone in a similar situation would be willing to reassure us about this surgery and how things have/are working out for them.
My son, Spencer is 10 years old and has PMD Luekodsytrophy (a progressive degenerative disease of the brain). He is nonambulatory, nonverbal, and cant even support his own weight. He is fed continuously by a GJ tube. He also has a severe curve (more than 110 degrees).
We are scheduled for surgery next week and, honestly, even the "success" stories on this and other sites, scare me to death. It seems that recovery is so long and painful even for an otherwise healthy person, and I just dont know how little Spencer is going to fare.
Since some of the previous threads seem to indicate there are others on this forum with children like Spencer who have had this surgery and I was hoping someone might share some advice on how to get through this and what things will be like for the next few weeks, months and years? Anything encouraging would be very welcome, but we most want to know what reality will be like.
Thank you, and if you would be willing to answer specific questions, please let us know.
A very concerned Spencer's Dad.
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