Monday, February 7, 2011

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.

7 comments:

Garola Gang said...

I know these seems overwhelming to you as her mama, but I cannot tell you how helpful this update is for how to best direct my prayers. Lilah is a miracle!!! She is growing and thriving with the help of her loving parents. You DO KNOW what is best for her and have displayed that repeatedly! I am always praying for that precious little girl that she will fulfill the purpose for which she was created! She's inspirational as are you!

The Avery House said...

Gina, Thank you for posting about Lilah's medical status. Although I can never fully understand all that is involved with her care, it does help to grasp the enormity of what her medical concerns are and to be able to pray for her specific needs. You are a very strong and wonderful mother to Miss Lilah. I think she thrives in part due to what loving parents she has in you and Paul.

J. K. Jones said...

Praying...

Anonymous said...

Sweet Lilah! We love you so much and pray for you everyday!!
We are some of your biggest FANS!!
Love, Aunt Liz, Uncle Seth and Baby AnnaKate

Art Sexy: Exposing Art, Myths and Monsters of the Sea said...

You guys are such an amazing family, I really hope you are feeling well and Lilah gets stronger! XOXO

Anonymous said...

Hi i just started reading your blog. And i am sooo sorry about Lilah.... SOUNDS REALLY BAD!!!!!!! i am sure that you will get through this and love her just the same.

your in my prayers.
XOXO, MAGGIE:)

Shannon said...

Gina-found your blog! Love your writing! Will pray specific prayers for sweet lilah and for you!! You are an amazing mother to her!! Shannon