x-ray

Scheduled for tomorrow at 1:40.  Asher has the best doctor in town.

His button was looking a little more funkified than normal this morning, so I'm going to have her take a look at that, too.  It's always a little red around the perimeter and has granulation tissue, but I think it might be infected (noticed a little bit of white today).  Poor goose.  We have some Bacitracin that we can put on it, but he would probably benefit from oral antibiotics.

Let the good times roll.

adventures in tube feeding

It is a rare occasion that I am up this early.  Granted, I know that to most of you 8:00am is a far cry from "early," but on a typical day my alarm goes off at 9:00am.  Asher doesn't usually get up until 10:00am.  His feeding pump goes off between 7:00 and 8:00, though, depending on how promptly we got him to bed the night before, so every once in awhile I just stay up after turning off the pump alarm that indicates that his overnight feed is finished.
Days like today I stay up just because it seems more appealing than going back to bed.  But sometimes I stay up because his med port has come open at some point during the course of the night and he's lying in a giant puddle of formula.
Yes, it's as gross as it sounds.
It baffles me how the kid can sleep through being drenched in cold, sticky, wet formula.  It's not something I've personally experienced, of course, but I would think that those sensations would wake me up at some point.
Not Asher.  It isn't something that happens very often, but every time I've gone into his room to find him like that, he's been sound asleep.  I REALLY wish he would wake up, because then I wouldn't have this horrible feeling that my poor baby has been sitting in formula for goodness knows how long and the mess could at least be minimized.  A friend of mine whose daughter gets overnight tube feedings says that her daughter sleeps through it as well, so it's not just an Asher thing, apparently.
Frankly, I think he does it because he likes morning baths and he knows it's the only way mommy will gather up the motivation to give him one so early.  ;)

Another great find, and a big day

Man, good stuff is just coming out of the woodwork these days!

You know how I posted the other day about always having to put Asher in a onesie so he doesn't go after his button?  Well, a big concern of mine has always been what the heck we were going to do once he outgrew size 24 months, because that's where onesies stop.

Except they don't!

Someone on the CFC listserv posted this link the other day, and I was thrilled!  I'm so relieved to know that we can now go all the way up to size 5T - and they have both short and long sleeves.  Yay!

In other news, Asher had a BIG day at therapy today - he signed More!  He's sort of signed it here and there, but always with prompting and never with much consistency... but today he signed it several times, and all on his own!  It's a sign we've been working on for a long, long time, and it's so awesome to see the fruits of all that effort.  He made his SLP cry.  Of course, he hasn't done it for me at home yet (stinker), but he will.  :)

His OT recommended we pick up some linking beads for him, so I got these tonight at Wal-Mart (we were there to pick up a Site-to-Store order, thus forsaking our beloved Target).  I'm not sure if they're quite what she's using, but I think they will serve the purpose - getting him to be more purposeful when he has two objects in his hands (he's very good at holding two things, but all he ever wants to do is bang them together... this works on expanding his motor skill set).  I saw similar links at Borders the other night... for $20!  I was sooo not gonna pay $20 for plastic linky things.  I knew I could get a better deal.  I got the Bright Starts ones for $7 - much more my speed.  :)

And finally, the part I've been putting off because I wish it weren't so, and because I was yearning so badly for a different outcome.  Ms. Chrissie went home to be with Jesus this morning.  She fought so valiantly, and her mom has been so strong throughout everything.  I take comfort knowing that she is finally healed and free from pain, but my heart breaks for Lorraine.  Thank you to everyone who has prayed for them - they still very much need those prayers as they face a world forever changed.

surfin' USA

Don't you just love it when you've thought to yourself a million times, "It sure would be nice if they made something like that..." and then you find it?

Asher's button is a constant source of frustration in that he really, really likes to grab and scratch at it.  We always have to dress him in either a onesie-type outfit, or use a plain white Gerber onesie as an undershirt if he's wearing a 2-piece outfit.  If we don't, he'll just go to town on his button.

I actually had the thought that doing aquatic therapy would be a heck of a lot easier if he were a girl simply because we could buy a one-piece bathing suit and not have to worry about it.  And I thought, it sure would be nice if they had one-pieces for guys.

Turns out they do!

This outfit from Speedo (called a Polywog, which cracks me up) is SO unbelievably perfect.  It has a built-in flotation device, will keep his skin insulated, and it's ONE PIECE!  When I saw it hanging at the store I first assumed it was two separate pieces being sold together as a set, but nope - the shirt and the shorts are sewn together.  It's the perfect size, too (for ages 1-2, up to 33 lbs).

The best part?  It was only $25 at Target!  Considering that it's basically the ideal swimming outfit, I would have paid twice that.  And if you know me, you know I'm a cheapskate frugal homemaker.  Frankly, giving me peace of mind and my little guy a great water experience?  Priceless.

new button!

Asher's new AMT mini-one button arrived via UPS today!  We're so excited!  Our doc put the order in several weeks ago, but Apria told me it was on about a three-week back order.  No matter - it was definitely worth the wait.
In construct, it's really not all that different from the mic-key button he was using before.  In fact, it works in exactly the same way and is even compatible with mic-key extension hoses (which is fab, because we have a boatload of them that I'd hate to throw out).  What's different about it is that it's made entirely of medical grade silicone and has no hard plastic on it, and it's even lower-profile than the mic-key is... which is saying a lot, because the mic-key is known for its small size.
This is what a g-button kit looks like in its packaging, for those of you who have ever wondered such things:

I meant to take a picture of the mic-key before we changed it out, but like the super on top of it mom that I am, I totally forgot... so I dug up an old picture that shows it:

(This was right after his plastic surgery to remove his hemangioma - he was a champ!)

Now, in all fairness, the above pic was from January of '09, so Asher has obviously grown some since then.  Here's what his new button looks like:

 

Don't let the redness around his stoma site alarm you.  I've actually had docs tell me that his site looks really good in comparison to a lot of other kiddos.  We hope that over time his skin won't be as sensitive and it will look even better, but for now we're happy to not have any major issues (e.g. infection).
I feel so much better about the mini-one button.  The fact that it's all flexible silicone gives me a lot of relief when it comes to thinking about him hanging it up on something, like his bath seat.  And I like that it's smaller in general and less obvious underneath his shirt.  We're hoping the smaller size helps with tolerating tummy time, too.
Hooray for new things!

The Terrible, Horrible, No Good, Very Bad Day

Sigh.

One of those days.

One of those days that can only be classified as a Terrible, Horrible, No Good, Very Bad Day.

I woke this morning to find Asher drenched in puke, which was exactly what I was hoping to discover first thing (is your sarcasm meter turned on?).  It took forever to get him cleaned up and fed.  My laundry load doubled.  The sun disappeared behind the clouds and refused to come out.  While trying to mind my own business in the waiting room at therapy (read: nose buried in book) someone else insisted on asking me questions about Asher, all of which had depressing answers.  I didn't get to eat dinner before Bible study so ended up having to buy an overpriced turkey club at Borders instead of the gooey tasty treat I would have preferred - and it was cold despite being heated up.

It sucked.

The real problem with that is not that it sucked for me, but that I'm a crappy parent when I'm pissed off.  I have next to no patience, and things that I take in stride on a good day threaten to push me past my breaking point.  Asher obviously sensed that things were awry, because he cried and cried for most of the day (with a few respites in between) despite my trying to keep him entertained.  He didn't want to sleep, he didn't want to play in his roundabout, he didn't want to play with Elmo... all he wanted was to be held, which - and this is just being honest, as much as I hate it - was the last thing I wanted to do.  I just wanted to drink my tea and be left alone.  Unfortunately, that's not really an option of motherhood.  So I resentfully sat there and held him when really I just wanted to get away.

Thus concludes my application for Worst Parent of the Year.

Bedtime, and Why It Matters

I consider myself a rather organized and schedule-dependent person.  I'm a fan of order.  But sometimes dependence on schedules can be a real pain when something throws the routine out of whack.  Things like hanging out at a festival.

After Chad, Asher, Sebastian, and I were done exploring Rivers & Spires yesterday, I had to go back to the CM booth to work my second shift.  At that point it was approaching 4:00.  Well, apparently somebody (ahem) let Asher nap until nearly 8:30PM.

Asher's bedtime is 9:00.

Yeah.

See, for most kids it wouldn't be a huge deal, but Asher is tube fed through his Mic-Key button (see picture) continuously overnight - that's when he gets most of his nutrition, actually.  Ever since he was teensy, he's had issues with vomiting.  It used to be bad, but over time it's actually gotten a lot better - provided he's allowed enough time to digest.

Last night he didn't go to bed until about 11:00, which means his food didn't go off this morning until 9:00 (whereas it usually goes off at 7:00).  Asher basically had no time to digest before we had to get him up and start getting him ready for church.

Do you see where this is going?

I thought he would be okay.  We managed to get him dressed, load him into the car, drive to church, and drop him off in the nursery without any instances of vomiting - all signs of being in the clear.

Lo and behold, about halfway through service, Melissa, one of the girls from the nursery came to get me because Asher had gotten sick.  Not only did he get sick, he projectile vomited all over my friend Joy's shoulder.

Lovely.

So as I was changing him into a new outfit, it occurred to me that it would seem really odd to most folks if your kids had just puked everywhere and you put new clothes on him and then left him in there.  So I had to go through the whole spiel about how he wasn't really "sick" and how he had eaten late and usually had more time to digest and yadda yadda blah.  They understood (or else feigned it really well), so I went back and listened to the rest of the sermon.

It's really easy to forget that the things about Asher that are so normal to me can really freak other people out.  I'll be going about my business all nonchalant, and the whole time they're thinking "what kind of horrible parent are you to not notice your kid doing XYZ?"  I try my best to recognize those potential situations and head them off with an explanation, but it does get hard sometimes, and sometimes I forget.  And sometimes I get selfish and angry and feel like I shouldn't have to explain myself or my kid to everyone, which is not the right response.  The reality is that Asher isn't typical, and it's really not realistic or fair for me to expect a random stranger (or someone who's never seen it before) to understand that.  So, until I make up a little "I have CFC - here's what that means" t-shirt for Asher, I'll just have to keep explaining.

Just kidding about the shirt.  Maybe.  ;)