Sunday, February 20, 2011

So, I'm 2/3 of the way through this pregnancy (gulp!) and I've been doing a lot of mental comparing between the 3 pregnancies.  Strangely, I don't remember much of Lilah's except for being disgustingly sick for too long.  Garrett's was great except for what seemed, at the time, like extreme fatigue.  And, the only real distinguishing feature of this pregnancy is that this little one is making it uber hard for me to breathe.
 They've all had the normal pregnancy stuff, including cravings (spicy, ice cream, spinach, blue cheese) and repulsions.  Well, actually, no repulsions this pregnancy (as the scale can confirm), but with the other 2, the thought of chicken made me sick. And, it lasted for a very long time after each baby...only recently have I been able to eat the feathered friends.
BUT then, on our road trip to north, I saw this:

a dirty semi truck crammed with nasty chickens.  Seriously.  Disgusting.  Feathers flying across the interstate.  Chickens stuffed in those wire boxes so tight that their skin was squishing through the slats.  So now, chicken is out again! Which is okay, I makes more room for ice cream.

Friday, February 18, 2011

Someone has news...

Lilah has officially learned to sit up--that is, move from laying to sitting.  I went in yesterday to get her from a nap and she was siting up!!! It may not seem like a big deal, but after 2.5 years of finding her in the exact position I laid her down in, finding her someplace different is huge!! I am so proud of her:).
Now if we can just learn how to lie back down in the middle of the night--without momma's help!

Thursday, February 17, 2011

The little ones have  been taking a lot of baths lately.  Partly because they are congested and partly because it's a good activity that they can do together (one of the few).  Nothing better than a fresh baby:)....

Lilah's hair is so long when wet!

I may never get a 'normal' picture of my little boy again...he's either making silly faces or refusing to be photographed!

Tuesday, February 15, 2011

Who's in Charge?

Hello.  This is Gina, reporting from sick bay.  I had a feeling that February would be bad, because January was illness-free (and I'm an optimist like that:), and I was right.  All of us have had some crud or another for weeks....ear infections for both children, head colds that turned into chest colds, RSV for Lilah, sinus infections and tooth decay for me (I only report on this because it was not a minor issue).  As for everyone, a month of family illness is draining, to say the least.  We've at least doubled our regular dates with our 2 pharmacists and various MDs....and that is saying something.

I haven't been able to make it to my bible study lately (btw, I'm starting to feel like one of those weird people who talks about 'bible study' 24/7....that's not really me, I just don't go anywhere else except Target, the grocery, and the doctor...and I've run out of stories to tell you all about how my kids throw fits or people say weird things.  anyhow...), but I've been getting my handouts.  The child-rearing one from last week, or it could have been 3 weeks ago, was titled "who is in charge", or something like that.  I can't really tell you what it said because, of course, I haven't read it yet.  But it got me thinking.  At first, I immediately answered (in my head, to myself) "ME!".  As, opposed to my kids, of course!

I'd like to think this is the case 90% of the time (although I'm sure the spiritual answer to that question is supposed to be, "God"), but it is certainly not the case lately.  Because, the children are whiny and fussy, and the adults are, well, about the same.  My work ethic lately has been "bare minimum"--that is, keep them alive, dole out their medicines, and feed them.  The in-between times have been spent pacifying the small people what they want so they will just be quiet. (I know, right? I'm a role model for mothers everywhere.  ha).  This mean copious quantities of TV, juice, and lots of yeses (this is supposed to be the plural of yes, I have no idea how you do that?) and almost no 'nos' (again,?).

And you know how long it takes the little people to catch onto the fact that there is a hole in the armor of their mother, the warrior? About .002 seconds.  They are loving it and spoiled absolutely rotten. Getting everything they want because their parentals are too exhausted to tighten the reigns? This is what every child works relentlessly to achieve, no?  Well, mine are winning and I realized this quickly yesterday when I noticed that Garrett had chewed an entire pack of gum in 12 hours.  And not, he snuck around and got 20 pieces of gum, but he asked me for each and every one---and I said YES! You know why?  Because I am weak and defeated and the balance of power has shifted.

They are in charge.

So, I am collecting my little ones and retreating to my parents for a week to restore my health and regain my power.  Because we all know that an extended stay at the grandparent's house is the way to redeem parental control, right?;)  Well, at least maybe I'll come back refreshed enough to begin the challenge.

Saturday, February 12, 2011

Is it Spring Yet?

Because the charm of Old Man Winter has worn off (right about January 2nd) and I'm ready to kick him in the snowballs. (I'm sorry I know that's totally crass, not to mention unlike me:), but I'm delusional).  I'm tired being held hostage by the snow, the freezing-ness, and the ugly army of viruses that has descended upon the world.  Everywhere I go, which is really only doctor's offices, the kids' school, and Target (in that order) there is a hush of fear over the crowd....people whispering about how the flu, RSV, the stomach bug.
So, I've decided to go to my happy place and pretend the "whoosh" of the constantly running nebulizer at my house is a cabana boy blowing leaves.  And that the humidifier is the ocean breeze.   And that the slew of prescriptions is actually a pool-side bar.
Join me.....

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

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.