Care Notebook

Next May, Chad and I will be going on a weekend trip alone for the first time since Asher was born.  We're attending the Weekend To Remember marriage getaway in Franklin, TN, and I'm SO looking forward to it. 

My parents will be staying at our place and watching Asher while we're gone, so I need to have lots of information written out since he's not your typical kid and this will be the first time they've watched him overnight.  I came across this care notebook from Seattle Children's that I think will make that process much easier for me.  There is an editable PDF for pretty much everything you can think of (and then some) regarding special care.

We should have had something like this filled out long ago, but better late than never.  It's worth taking a gander if you have kiddos with special considerations. 

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.

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).

*breathe in, breathe out, breathe in, and... SCREAM!*

I should warn you that this is a vent.  If you're not down with that sort of thing you can go ahead and skip the rambling that is to follow.

WHY is it that I have to justify my level of productivity since I stay home with Asher?  Why on earth do people assume that I sit around all day doing nothing?  Listen, I'm not saying that I have the hardest job in the world by any stretch of the imagination, nor do I deny the fact that staying at home allows for a certain level of flexibility that a 9-5 job doesn't.

But, as John Stossell would say, GIVE ME A BREAK.

Quitting time?  I'm never truly off work.  Ever.  Oh, I get out of the house fairly regularly, but most of the time it's for some productive purpose, and even if it's not, I'm always "on call," if you will.

Weekends?  What are those?

A full night's sleep?  I don't know what that is.  Asher's tube feeding means I get up at 2:00 AM every morning to switch out his formula because it can't hang any longer than 5 hours before being at risk of spoiling.

Finishing a single blog post without being interrupted?  Nope.  Asher is now sitting in my lap while I finish typing because he was no longer happy in his roundabout, and the only other person in the house isn't even awake anymore.

Oh yeah, and then there's all the stuff that has nothing to do with Asher.  I have to do all that, too.

Here's today's list:

Feeding therapy
PT
changed 2 nasty (I repeat, nasty) diapers
fed Asher
made ours and Asher's beds
5 loads of laundry (washed, dried, folded, put away)
cleaned dishes/counters/stove
cleaned espresso machine
bleached and deep cleaned Asher's bath tub
cleaned out vanity
took out trash
cleaned pool
wiped off outdoor table
swept porch and sidewalk
stored stuff that doesn't belong in the house in the garage
checked CM and TMN since I volunteer for them
scored for Pearson
designed graphic for church website
made dinner and put away leftovers
put away ridiculously huge blanket
changed litter box and put away pellets
organized Chad's dresser
walked and fed the dog
had QT

But other than that I didn't do anything except check facebook and play with Asher, so I see where they're coming from.

*glare*

just a little note to say...

Happy Mother's Day!  Hope you are having a great one - I am!

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.

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.

Raising Asher

So I know what you're thinking.

Really, Cayla?  Another
blog?

Well... in short, yes.  :)

In
not-so-short, I've been thinking about doing this for awhile now and
just haven't taken the time to make it happen.  Technically I don't have
that time this weekend, but I'm feeling inspired, so here I sit at
12:26AM, typing this little explanation to you, faithful reader.

I
already have a blog.  You can read it here.  I have no plans for it to go anywhere.  As
a matter of fact, I'm still in the process of trying to convince my
husband that he needs to do his fair share and post once in awhile.  But
whereas MMLA is about basically anything and everything, this blog is
about one thing only: Asher.

Some of you know Mr. Asher and
his story quite well already.  Some of you don't (but soon will).  Now
that we have entered into the realm of the two-year-old, it's time to
chronicle.

You see, for so long Asher was so
behind.  He still is.  But before he had little interest in the world
around him, and frankly, I was just trying to get by and clinging to a
prayer.  Over the past several months I've watched as my son hit
milestones that I once was unsure if he would ever reach.  I've watched
his personality blossom into its own very distinct Asher-ness.  I can
play with him... and he can play back.  I can talk to him... and he
responds to me in his own little language.  Yes, most kids have blazed
past him as they hit their own earmarks of development, but Asher has
never given up, and though he is left behind in their wake, he is
marching ahead at the pace he and God have determined.

And
I'm okay with that.