It's been a minute

And WOW.  Blogspot's interface looks entirely different.  I guess a lot can change in, err, nine months.

Most people I know are on my facebook and keep up with Asher through that means, so it's easy to just post it all there and not write out anything more lengthy in this little corner of the web.  Then I'll realize it's been ages since I posted anything, feel guilty, and write a new update.  Tada!

Well, since the last post, Asher has undergone major orthopedic surgery on his hip.  Turns out it wasn't just a loose tendon and he was dislocating like a circus performer.  He had surgery to correct his malformed bone structure at Vanderbilt Children's in June, and after a long summer, the cast will come off next week!  Unfortunately, he isn't finished.  His surgeon only operated on one leg after determining that bilateral surgery was just too risky with all of the work Asher needed done, so we still have the other leg to go.  Thankfully, he'll get a little break between the two surgeries and get to enjoy a couple of months of cast-free time before he goes back for operation (and cast) #2.

Therapies continue as usual (though his therapists and time slots have changed around a couple of times), and last week he started his second year of preschool, his last before entering into the big bad world of kindergarten.  He loves his teacher and classmates, and after being stuck in a stationary position and staying mostly at home all summer, I think he's glad for the change of scenery!

My goal is to update this page on a semi-regular basis, so I hope to be back soon.  ;)

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. 

worth 1000 words

They see him rollin'

Today was our appointment with the Wheelchair Clinic at Vandy.  I wasn't completely certain what to expect, but it turned out really well!  Both the therapist and vendor were really nice and presented us with our different options (which, frankly, are few and far between with a tot like Asher).

He's getting a Quickie/Zippie Kidz wheelchair.  I was hesitant to post the picture here, because it really doesn't do it justice.  Asher was so adorable in it, and he started to figure out how to propel himself almost immediately!  It was like it was somehow intuitive for him.  The chair is really, really small, too, and anything in miniature is just plain cute. ;)

We're getting some pretty swanky bonus items.  For instance, the little wheels on the back will light up like kids' sneakers!  How cool is that?  The frame is going to be Toxic Green, and it's going to have a detachable tray and armrests.  That way we can switch between having a wheelchair he can propel himself (as shown above) and having a space where he can play and we can just push him.  It comes with a handle for us to push him around, but it's not shown in the picture.

We also got a special, breathable seat for him that will help keep him from getting too hot.  It has a meshy foam in it that was originally developed by NASA (what's up with NASA and foam, anyway??), and the entire pad is machine washable.  Can I get a hallelujah?!

I have to admit that I was unsure at first.  I mean, let's be honest: it looks like a wheelchair.  Until now we've just used a regular stroller with Asher, so nothing about it has appeared any different than any other kid's equipment.  He will most definitely stand out in this.  But in a way, that's a good thing.  It gets hard feeling obligated to explain that he has a disability to people when he does his gagging thing or we're feeding him through his tube or he starts shaking his head back and forth in a strange way.  The wheelchair kind of explains it for us.  Does that make sense?  Maybe not... I dunno.

All in all, we're pleased.  It will take anywhere from 6 weeks to 3 months for it to come in because we have to do the insurance dance, but our insurances have been very good to us in the past and have a good track record in general.

let's accessorize!

Check out my adorable new bag!

My friend Jessica is a consultant for Thirty-One Gifts, so I recently snagged this bag from her.  It was hard to decide which product I wanted, but ultimately I went with this Organizing Shoulder Bag to supplement Asher's full-size diaper bag.

See, he has several medical supplies that I feel like I need to have with me if we drive somewhere; however, I don't necessarily feel like they need to be literally with me at all times - just within walking distance.  So the plan is to have the diaper bag packed and in the car at all times, but then to have this smaller bag to carry around in stores and whatnot.

This bag is the *perfect* solution.

It's small and stylish (you can't really see the design on the bag in this pic - it has printed swirly things on it), but plenty big enough for all the essentials (which, in my case, are three diapers, baby wipes, eczema cream, hand sanitizer, disposable changing pads, a pukey towel and extra outfit, a Tide-to-Go pen, two toys, and my keys.

:D

I'm so excited, because Asher is getting heavy, and I was ready to lighten the load in some way.  Carrying this bag with me and keeping his bigger one in the car is the perfect solution.

If you've been looking for something like this, check out her website - they have tons of stuff.   This particular bag is on pages 18 and 19 of the catalog.

Anyway, Asher had a good day today.  He threw up his morning feeding, which didn't thrill me, but he was happy as a lark after that.  We're seeing some progress on the "More" sign, as well as on saying the word "bubbles" (which, in Asher speak, is "buh buh buh buh buh").  He's not consistent yet, but both therapists think that the above two things were intentional.

Tomorrow we go back for PT, and they were supposed to get a new KidWalk walker in to try out for a few days.  I doubt we'll put Asher in it, but I'd like a chance to eyeball it in person.  The videos of it are pretty darn cool.  It's also the first day he has PT before early intervention, so we'll see how he does (he was kind of fussy on Tuesday with back-to-back feeding and PT... tomorrow has a bit longer break in between, though).

Oh, and an update on the stroller/wheelchair dilemma: we've decided to have our insurance buy a wheelchair and we'll just buy a stroller OOP.  There's even a small chance that a friend of mine will be able to give us her daughter's old one!  She gave it to her PT not too long ago, but if the PT hasn't found someone for it yet then she'll give it to us.  More than likely it's been passed on, but the gesture is awesome nonetheless.  If that doesn't work out, thanks to some friends I'm now aware that Maclaren and others actually have "regular" strollers that have a higher weight limit than what we're using now.  We're working on setting up an appointment with the Wheelchair Clinic at VCH to get Asher sized and see what our options are, which will hopefully happen over the summer (there's a bit of a wait to get in).

busy bees

Today begins our first week of our new grueling schedule.  It looks something like this:

M: Speech 1:00-1:30 (ATS)
T: Feeding 10:00-10:30 (ATS); PT 11:30-12:15 (HPR)
W: OT/Speech 12:30-1:30 (ATS)
T: PT 11:30-12:15 (HPR); EI 2:00-3:00 (HOME)

ATS=Advanced Therapy Solutions and HPR=High Pointe Rehab

I'm a little wary of the Tuesday set up.  The appointments aren't far enough apart where I can go home and feed Asher in between (and give him enough time to digest), but they're not close enough together to just go from one to the next.  I'm still trying to figure out whether I should bother coming home or grab a coffee in between or what.  I guess we'll see how tomorrow goes.

Christina came in during therapy time at ATS today to say hi to Asher.  :)  I'm sure he was happy to see her, as was I.  I should clarify that she (nor any of the therapists at ATS for that matter) have ever made me stay in the waiting room.  He was always being co-treated, so I didn't want to be back there and be a distraction (and let's face it, I like my tea and book time).  Both Christina and Susan were coming out to our house for months when Asher first came home from Vandy, so I felt comfortable and familiar with their approaches.

In other news, we need to start getting more water into Asher.  We had to give him a glycerin supp today because he hadn't gone #2 in several days, and it wasn't pretty.  It's difficult finding the balance between getting the water into him and not causing him to throw it all up because he has too much volume.  We try to give him most of it during naptime, but Asher's now at an age where naptime is not a guaranteed thing.  Fun times.

in case of emergency

Today we're being hermetic and staying indoors.  The pool is finally full, thanks to weather that causes things like this to happen.

(you should click that link - it's kind of amazing, in a totally freakish way)

I was thinking to myself as we were watching this on the news today that this could very well have happened on a day that Asher had a Vandy appointment, and that we could have very well been one of those cars.  They were literally driving down the interstate one minute and then completely trapped the next.  The water rose that quickly.  One person in that area lost his life, as well as four more from the midstate area.

And then I thought, what if he was older?  And bigger?  And what if he weren't walking by then?  Would we have gotten out safely? 

I'm realizing that I need to think through our emergency preparedness a little more deeply.  Because, despite what that sticker says, Asher is a priceless treasure, and we his keepers.

Festivals, Light, and Noise

Today was spent entirely downtown at the Rivers & Spires Festival.  I was volunteering at the ClarksvilleMommies.com tent in the Kidz Zone, so I was there first thing at 10AM.  My first shift ended at 1:00, so Chad came down with Asher and Sebastian so we could just walk around and enjoy the festival.  The last time we went was three years ago, pre-Asher and pre-Sebastian, so it was due.

I have mixed feelings on this sort of thing.  I feel like Asher should get out and be able to participate in fun things like this - after all, we grow through experience.  On the other hand, there are certain things that are really difficult for him or that upset him, so then I wonder if it's really benefiting him or if it's just putting him through it for no reason.

There were two main issues with R&S: light and noise.  Asher has always had a sensitivity to light.  I remember the very first time we were able to take him outside - at four months old.  We had been moved over to "Pod A" of the Vandy NICU and his daytime primary, Gina, took us on a walk in the little garden that was adjacent to our new digs.  We have that happy moment documented on video, of course.  You can watch it now and see his desperate attempt to get away from the sunlight.  In all fairness, when you've spent four months indoors, going outside is bound to be a shock; however, even as he came home and was out more and more, he would still squint his eyes shut and try to turn his head to escape the sun.  Come to find out, light sensitivity is not all that uncommon in kids with CFC.  And, as with everything else, there's a broad range of what it looks like over time.  Some kids eventually adjust, and others remain light sensitive.  The joys of a rare syndrome with outcomes all over the map.

Asher's sensitivity to noise has lessened over time.  He used to freak out over what felt like the slightest increases in volume.  Luckily, it was fairly easy to soothe him and calm him back down, but things like going out to a restaurant were, for awhile, not an option.  Now I'm happy to say that Asher can join us at O'Charley's and sit and play happily in his highchair while we enjoy a nice meal that someone ELSE made.  Really loud things can still get to him, though, and let's face it - festivals are not known for their quietness.  Asher did really well today, however.  He only got upset a couple of times - once near the bouncy houses full of happy screaming children, and the other time when we stopped on the street to chat with some folks and it turned into one of those situations where you have three different conversations going on at one time and everyone slowly gets louder and louder so they can be heard.  Those can make me want to cry, too, so I don't blame him.  ;)

All in all, we had a great time, and we'll definitely be going again next year (hopefully with a CM explosion of presence!).  For now, I am dead on my feet with my first sunburn of 2010.  I think a long, hot bath is in order.