State of Lilah (part 1)

 I rarely update on Lilah's 'medical condition' lately because I'm busy dealing with it and it kind of overwhelms me to think about the big picture.  But for the purpose of seeking your prayers, here it goes.

Her heart:  The down and dirty is that the structure sucks but the function is fine.  She's got a couple of big things wrong (left ventricular non-compaction, ASD, VSD) and a couple of other 'little' things to watch (some stenosis).  The fact that she is functioning so well considering these things is amazing to us, but does not alter the fact that it could change at any minute.  The larger of these holes (the ASD) will be closed sometime in the next year, and probably at Vanderbilt.

Her back:  It's bad and getting worse.  She has progressive neurogenic scholeosis, with the worst of her 2 curves measuring at 41 degrees.  At some point (60+ degrees), she will need surgery to have a steel rod placed and that section of her spinal column fused together, as her internal organs would be comprommised at that point.  It's a terribly gruesome surgery and will be very hard for her.  As it is, her scholeosis is starting to affect how she sits, how she sleeps, and how her clothes fit (which is obviously not that big of a deal, but very noticible).

Her eating:  Lilah still recieves all of her nutrition via her G-tube and this is not likely to change.  We are thankful that she enjoys eating by mouth some, but comes no where close to getting the calories or hydration she needs that way.  I honestly don't mind the feeding tube except that it makes it hard for me to leave her with anyone because, while it's not 'difficult', there is certain amount of skilled care involved.

Her seizures:  Lilah has been off her seizure medication since this past summer and .....seizure free!!! This is huge and we are so thankful! We count this in the miracle column because it is fairly rare that a child like Lilah would outgrow her seizures, but, it's been 7 months off her meds, and her neurologist said we could exhale at 6 months.  Sigh....

Her communication:  She uses 6 signs consistently, but not always spontaneously.  Lilah has no spoken words but definately uses her sounds to communicate like and dislike.  If prompted she tries to point to what she wants.  Her level of frustration is increasing.  We have recently purchased a communication app for our iPad, but are working on figuring it out ourselves (i.e. making it simple enough for her) so that she can learn to use it.