not the blocks... not the RED PLASTIC BLOCKS!

The trip to Vandy only halfway panned out.  Asher did NOT want to have anything to do with the Bayley Scales.  It's just like any other standardized test - flawed out the wazoo.  Most of the test items involved these little red plastic blocks, which unfortunately make a horribly loud clacking noise when dropped on the table.  Have I told you Asher isn't a fan of loud noises?  He's not.  So the blocks freaked him out right away, and there was nothing else to be done after that.

Le sigh.

They want us to come back in June so they can try again, so we'll see how that goes.  We scheduled the appointment for later in the afternoon in hopes that Asher might be in a better mood.  This one was at 10:00AM, and he had pulled his feeding pump and bag off their stand the night before, flipping the bag upside down and causing the formula to seep out - all over the bed.  It wasn't the most restful night for any of us.  I swear, it's like he KNOWS when we have to get up and be somewhere early the next day.

Anyway, we stopped by Panera Bread afterward, as promised (to us, by... us).  I had half a Bacon Turkey Bravo and a bowl of Vegetarian Creamy Tomato soup.  Man, we would be in trouble if we had one of those here.  We got there along with the rest of the noon lunch rush, and I must say, I was proud of how well Asher did with all of the noise around him (see Paragraph 1 as to why this makes me proud).  He fussed a little, but nothing major at all.  Either he already had it out of his system, or even he - the non-oral-eater - understands the wondrous NOM that is Panera Bread.  ;)

semi-annual trip to...

Panera Bread Vanderbilt Children's.  Asher has his last appointment with the Neonatal Follow-Up Clinic tomorrow.  They will do some sort of standardized test and talk to us about his delays.  It's really a formality at this point, but I'm thankful we've been able to see them the last three years, especially early on.  They gave us some good advice in regard to skin issues that no one else had really addressed.  I'm sure it's also helpful to them to be able to follow up with their graduates.  Not to mention, they reimburse us for gas.  Seriously!

One appointment we won't be going to is Genetics.  It's scheduled for next week, but after tomorrow's visit I'm going to call and cancel.  Now that we have our diagnosis, the clinic really isn't helpful for us.  We know far more about CFC than they do.  We went for a visit after Asher had been diagnosed, like good and faithful patients, and it was very disappointing.  They basically asked us if we had any questions and sent us away with a printout about the syndrome.

Um.

Please don't get me wrong.  I'm not hating on the clinic in general, or the doctor or counselors - it's just a waste of time for us.  If they were interested in doing some sort of research study, I'd be all about it.  Or even if they would schedule our appointment on a day we're already there, I'd suck it up and go.  But I'm not driving all the way to Nashville specifically for that one appointment so that I can sit in the waiting room for over an hour (they have the worst wait time of all the docs we see) only to have them ask me if I have any questions about a syndrome they know next-to-nothing about, except that it occurs in the BRAF, MEK1, or MEK2 gene and is spontaneous.  And before you ask, yes, I've tried to get his appointment moved, but unfortunately his doctor works clinic days that are opposite of Asher's other appointments (like tomorrow's).

So there.  My confession. 

A new routine

Asher's Pre-K Curriculum

The W's Abide

We're in.

Finally.

Over the past half year or so I've learned a couple of important lessons about house selling.  One, it is a monumental effort to present one's home to complete strangers on a regular basis.  Multiply that by pi for every pet you own.  You might need to work on your multi-tasking skills because you will have to do that multiplication whilst vacuuming.  Constantly.  Invest in ear plugs if your small child is less-than-fond of the roaring beast that is Bissell.

Two.  Never sell your house.

Okay, maybe that's not quite realistic.  Families grow, businesses relocate, needs change.  Yadda yadda, I know.  Our family of three (+4 four-leggeds) had most definitely outgrown our little two bedroom cottage.  It wasn't helping matters that I clung am clinging to every single toy and article of clothing that Asher had ever owned with a Vulcan death grip. 

Aside: That's the second time this week I've worked a Vulcan reference into conversation.  The first was laughing with some girlfriends as they discussed Farmville tactics.  Trekkies everywhere should be proud of me.

It was time for three bedrooms, and it was time to move to a neighborhood that was a little more family and wheelchair friendly.  And I must say, I love our new home.  Love it.  It's a ranch, which gives Asher full accessibility to all the main areas of the house, and it even has a handicap accessible bathroom for when he gets a bit older and we enter the world of solo-bathing.  The jetted garden tub is nice for therapy, too.  Mommy therapy.

Nonetheless, the cottage holds many memories, and I started crying like a baby was a little sad as I locked the back door for the last time.  Our first home as a family is now ready for someone else's firsts.  Asher won't remember snuggling with his daddy after his first bath at home following a four-month hospital stay, won't remember his first birthday, won't remember his first giggle - but I always will.

a revival is coming

We sold the house and should be (for real) moving into the new one this week!  Expect lots more updates after that!

Mischief Maker

That's Asher's new official title.  I'm sure he would prefer  we call him Sir Mischief Maker, but I have to draw the line somewhere.

The boy knows how to get around and about.  As with everything in his life, he has his own unique way of doing that, but it most certainly gets the job done.  Life as we know it from three feet and under has changed dramatically.  He's constantly scooting over to the entertainment center and rearranging the DVDs.  By "rearranging" I mean he's grabbing them and flinging them onto the floor, which is inevitably followed by a burst of giggles.  Most of the time the giggles make the mess worth it.  Most of the time.  I won't lie - it occasionally gives me an eye twitch.

Lately he has moved on to broader horizons.  The other day he managed to make it all the way to the dining room!  It looked something like this:

 

He was thrilled when he finally made it to the chair.  He played with that thing for a good 15 minutes before I finally decided that the Parenting Police would surely lock me away for the travesty of allowing my child to deprive himself of his own toys, so I relocated him back to the Kid Zone.  He still insists there aren't enough toys.

this n that

So it seems I haven't updated in ages.  Yikes.

You see, I THOUGHT we would be moving and I would pick the blog back up after we moved, but the contract we had on the house fell through, so that won't be happening.  Might as well give an update then, right?

As far as house stuff goes, our listing expires in March.  If the house sells by then... hooray!  We'll move into a larger place and settle in there.  If it doesn't sell by then... hooray!  We'll be making some fun updates to this house and enjoying our stay for a few more years.  I'm honestly okay with whatever direction the Lord has for us at this juncture.  Each avenue has its pros and cons, and He ultimately knows what is best.  Chad might not have such peace about it right now - and not that I blame him, as he is the handyman when things go wrong in our little 1950s cottage - but he'll come around.

Asher is doing great.  He's been practicing in the walker at PT and is doing quite well.  Still settling in, but definitely taking some legit steps.  The other therapies are kinda at a standstill.  Or maybe I should say the progress isn't as consistent.  He has good days and bad.  He is getting quite a bit better about accepting different textures and flavors in his mouth without gagging, which is huge.  Eating is still a long way off, I think, but getting that gag under control is a big step.  He uses a few signs intentionally - "more," "play/music," and "all done" are some that we've seen.  He also waves bye-bye when he's in the mood (sometimes with prompting, and sometimes without).

He's also slowly learning to use his chair.  One thing that gives him trouble is that when he's sitting on the floor, he uses his core to scoot across the floor, and he tries to use that same technique in the chair vs. using his arms to propel the wheels.  He does the same thing in the walker (using his core instead of his legs).  He'll figure it out.

One thing he's figured out lately is how to sit up on his own!  He's been able to sit for awhile, of course, but if he was lying down he couldn't get into the sitting position.  Now he can roll to his belly, push up on "big arms," and swing his legs around into a sitting position.  Not technically the way he's supposed to sit up, but it works for him.  I'm really proud of him for figuring it out all on his own.

Anyway, there you have it.  If you don't hear from me again before then, MERRY CHRISTMAS!