Wednesday, February 9, 2011

Her gross motor:  Lilah continues to sit very well and her rolling is improving.  If highly motivated, she can scoot on her bottom on the hardwoods or wiggle on her belly for a few feet to get something.  After 8 months of working on it, we have seen her independently move from lying down to sitting up 1 time.  Her new wheelchair is great (from my perspective, not hers) and if she would quit being so stubborn, she  would learn to use it more quickly.  At this point, it's a battle of the wills (and her will is fresher than mine!:).  Her motor 'planning' (how the brain plans what muscles and nerves to use to accomplish a movement and then executes) is poor and inconsistent and definately stands in her way in all sorts of areas (for example, she may see a toy on the floor that she wants to roll to get, and although she can roll, she can't figure out how to do it in that moment.  or, she might want to point to a picture in a book, but has trouble isolating her pointer finger and extending her arm at the same time).  Again, we've seen a big increase in frustration:(.

Fine Motor:  This is by far her strongest area (unless you count charm and good looks), but she's still not even on the charts developmentally.  Lilah loves to color and 'draw' and is really pretty good at it considering her limitations.  She loves her Magnadoodle and Aquadoodle and sidewalk chalk and pens.  She also has an incrediblely strong affection for crayons and I've discovered that she is fast as lightening when it comes to eating them (and also that wax is disturbing when viewed in a diaper or backed up in a feeding tube).  We've seen a lot of progress in her upper body strength and it is so sweet to go in her room and see her on her belly, with her arms pushed up so that she can see over her bumpers.  After watching her lie flat on her back in the position she was layed down in for so long, we get such a thrill out of seeing her in any different position.

Cognitive Skill:  This one is hard to talk about and even harder to measure.  Lilah has so many obstacles to demonstrating her knowledge of things (i.e., no speech, poor motor planning, etc) that it's impossible to know where she really stands.  We do know that she is severely cogntively impaired, but certainly still making strides in the right direction.  We've seen such an increase in her ability to follow simple directions and undertand familiar phrases.  She continues to demonstrate great awareness and participation in her surroundings.  We underestimate Lilah's understanding regularly and it's a great surprise when she proves us wrong.

Hearing:  Lilah does have some hearing loss but it's in the borderline area in terms of needing to be "aided", so for now, no hearing aids.  We will keep an eye on it.  Despite her second set of  PE tubes falling out this winter and she's been ear infection free.  I am shocked and thankful!

Vision:  It seems ok, but we haven't had it tested officially.

And...a slew of minor issues.  It is, very literally, always something--and that's one of the hardest parts.  The mental, physical, and emotional juggling of so many things is exhausting.  There are many days where I would love to push "pause"on the nurse calls, the doctor visits, the medicine filling, the therapies, the insurance issues, the breathing treatments, the 'goals'.....but that's just not how it works.

 Obviously it's sobering to list your child's impairments, but it also makes me realize how far she has come.  I can clearly remember begging the Lord to "just let her know me and let me know her".  Check.  She very clearly knows and loves her family and she has plenty of personality.  Lilah is experiencing relative health (given the possibilities) and seems enjoy her life.  The thing is, it's human nature for it to "never be enough".  And, I can tell you as her mother, it sure doesn't seem like enough that she can sit or smile, even though there was a day where I didn't expect that.

Right now, there are good days and bad days.  Some days where I am truly thankful in all things and days when I'm begging for it to be easier.  But, that is life...for all of us--knowing that this race is a marathon and not a sprint.  And this race, although certainly not the one I would have signed up for, is the race God has for me, for my child, for my family.  And I know that He longs to lead us, love us, and sustain us through it.

As always, we are humbled and grateful for your care and prayers for her and for us.  We believe that God hears and answers the prayers of His people and it is the greatest thing you can do for Lilah.

   But those who hope in the LORD will renew their strength. 
    They will soar on wings like eagles; 
    they will run and not grow weary, they will walk and not be faint.
                            -Isaiah 40:31

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