Growing rods?

[Guest guest]

Hi all,

 

Well, my little Layla (22months old) is home and recovering from her spinal cord release.  Everything went OK, asided from the spinal fluid leaking, more stitches, then fever due to infection, back & forth to the hospital, etc....ugh.  Honestly though, she is now doing well, and the site is healing beautifully.  The neurosurgeon released her with the thumbs up for plans to get her cast back on.

 

Hard part:

 

Went to the ortho today.  Her curvature right before her last cast was 97 degrees, and about 72 degrees with the cast on and a few weeks of adjusting the turnbuckles weekly.  Today's x-ray, after being out of cast for only 2 and a half weeks, show her curve to be at 117 degrees.           Dr. says that casting isn't going to hold her, she's been in and out of casts for about 10 months now, with no progress.  Said he's probably going to start the surgical process within the next 6 months, but first, they'll probably put in a G-Tube to help, no MAKE, her gain wait.  Said right now her body is using every bit of her calories on breathing alone.  He is going to cast her in the meantime, but DARN IT!!!!! My brain and heart are aching for her.   I just can't get over the fact that once the surgical process has begun, it's a commitment of invasion to her little body for every 6 months for about 10 more years.....I just want to scream for her. 

 

Thank you for letting me have this pity party.  I just know that a lot of you, as parents, know what I'm feeling.

 

Thanks again,

 

Trantham