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.....

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

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.

Stir Crazy

You might have heard me mention that I hate winter and, clearly, it's started to affect my mind.  Because, out of sheer desperation, I am resorting to things like this:

Letting my child who cannot manage to get bread from his plate to his mouth without a mess play with shaving cream.  I threatened him within an inch of his life not to touch anything with those hands so I could snap a picture and then it took me 20 minutes to clean up.  Good times.

It's kind of a moot point at this stage of the game...considering the year is 1/12 over and I will probably be spending a good portion of this year in the haze of late pregnancy/new baby, but here it goes:  My 2011 Resolutions.  Duh duh duh duh duh. (that was supposed to be a dramatic drum roll, but it lost something in translation).

1.  Read more food labels.  Not for calories or fat or sodium, but for weird unknown ingredients.  Last year I made a valiant effort for more whole grains and water.  This is the 2011 equivalent.  Did you know they put MSG in lots of spice packets?  I'm sure you did, but I didn't and I don't want anyone here 

eating it or any other creepy chemicals where I can help it.

2.  Quit watching stupid TV.  I realized I'm filling valuable night time hours of quiet with the catty chatter of stupid people that I don't even care about.  Also, I kind of feel like my mind is turning to mush induced by days filled with feeding tubes, super-heros, and arguments about whether little people need coats or not--stupid TV is not helping the situation.  Maybe the news or a good book or a least a movie with a plot would help.

3.  Join a support group or a really good friend who understands what it's like to have a child like Lilah.  I even hate the words 'support group'...it just sounds cheesy and not really like something I'd be "into", but, come to think of it,  I'm not really "into" having a severely disabled child either, so I guess that argument is out.  This journey, I am learning, can be incredibly isolating and lonely and, while I don't really feel like reaching out, I do think it would be good for us.

4.  Quit making sarcastic comments about my bible study.  It's great and I've learned so much and I don't know why I have to be such a smart arse when grown women act like a simple bible study requires a procedure manual and an oath  people are different than me.  Besides, if I don't take it a little more seriously, I might get kicked out.  

Cheers to 2011!

5.  Read some news.  Any news, pertaining to anything in the world, besides that Scarlett and Ryan are getting a divorce or Nicole and Keith used a secret surrogate.  I have a secret fear that I might have to have dinner with someone important and have absolutely nothing intelligent to talk about other how to clean around a G-tube or program a sheep clock.

6.  Get organized.  This has been a resolution of mine since forever and it's probably not going anywhere anytime soon. I have a feeling it's going to get worse before it gets better, but I'm going down swinging.
Speaking of going down.....

#7.  To NOT lose my mind.  I think it will be a challenging year and I'm more than a little afraid of what the addition of screaming newborn will do to the sometimes 'near brink of disaster' state of affairs around here.

Careful What You Wish For

If I'd ever get around to posting my New Years Resolutions, you'd see one that looks something like this:

Enable my children to be more independent (Garrett, to the extent that is age-appropriate, and Lilah, as she is able)


My sweet little boy loves to be served.  His general motto in life seems to be, "there is no need to do for yourself what someone else will do for you".  Cleaning up after himself, hanging his coat, washing his hands, walking upstairs to get a toy....these are all things that can by done by his slave-girl (aka momma).  Obviously, I do my best to encourage him to do it himself, but I know I need to ramp up my efforts.  And here is why:  A few weeks ago, the little prince called me into the den (where he was watching tv) to set his empty juice cup on the table.  I had been feeding Lilah, so this 'emergency' call had required me to disconnect a feeding tube first.  I was not happy.  Change has been in the air since.  A crack down on all needless dependence, if you will.

First on my list to tackle were G's refusal to independently wash his hands after the potty (he is absolutely capable, btw) and his bellowing of my name in the wee hours of the morning, just to say he was ready to get up (I think he's old enough to come downstairs alone).  Both objectives are going well, but I am learning why I have been an enabler for so long----it is easier in the short run.  I, however, have my eye on the prize of making my life slightly less chaotic come new baby (hah! this makes me laugh to even say b/c I know no preparation in the world will make this true), and am going to persevere.....despite some bumps in the road.

The first 'bump' came last week, when Paul was out of town (of course).  I had Lilah in the bath and Garrett was 'washing his hands and then some' in the sink in her bathroom.  I'm not really sure what the 'and then some' involved.....but I do know that it resulted in her sink falling through the granite countertop. Note to self:  most adhesives are not made to withstand a 40 lb boy.

The second 'bump' came this morning, when an interaction between a mis-programmed sheep clock and a new Iron Man toy resulted in me rolling over at 6 am to this staring me in the face:

Which was awesome because I popped out of bed ready to greet the day and, two hours later, my heart rate has almost recovered.  And, like MLK, I have a dream....only mine is of uninterrupted sleep.:)  At this point, I'm thinking MLK's dream seems more realistic.

It's a....

I had my big ultrasound this week and am happy to report a happy, healthy, very wiggly baby in there, who weighs a whopping 14 oz:).  I was getting a bit more anxious the closer we got to the ultrasound because even though I feel like this baby is healthy, obviously we are a bit more skittish than we were the other 2 times.  Just as a refresher, Lilah does have a genetic deletion syndrome....that is, her troubles are at the level of DNA and began at conception.  Through genetic testing and counseling right after we found out what she 'had', we found out that our DNA is perfect (actually, mine was perfect and Paul's was average.  kidding!), and Lilah's genetic disorder  was a spontaneous fluke 'accident'.  We also learned that our future children carried the exact same risk as the general population for any problems (i.e. no more risk than normal).

Every stage in pregnancy makes it more 'real', and this is definitely a big milestone.  There is definitely a baby in there, who is definitely coming sometime in early summer.  I am more than half way through the pregnancy, which is very hard to believe (except when I look in the mirror) and it seems to be moving more rapidly than the other two.  I already love this child, this next member of our family and can't wait to meet him/her.

We would appreciate any and all prayers for the health of this little one and for his or her continence.  May he/she be an 'easy', relaxed baby that sleeps well and allows me to care for the needs of Lilah (and the rest of us) as well.  I would be lying if I didn't say that I get a bit more nervous as the days go, as Lilah seems to be getting more difficult to care for daily, both physically and emotionally.

Oh, and we are not finding out gender;)


"Children are a gift from the Lord.  They are a reward from him."
--Psalm 127:3