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. 

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.

Three months later...

Alright, so I lied.  I wasn't right back to blogging.

To be fair, I had other writing projects, but this one has been woefully neglected.

Now those are being neglected and I'm writing here.  Ha!

Anyway, hitting the ground running.  The other day Chad picked Asher up and said that he felt his hips "pop."  This, of course, didn't sound good at all, so I mentioned it in physical therapy today.  Asher's PT (who rocks, by the way; having three awesome physical therapists in a row has just been a huge blessing) checked him out today, and while she doesn't think it's a big issue, she did recommend we schedule an x-ray just to be certain.  It doesn't appear to be dislocating and is more likely a stretched ligament "popping" when he moves a certain way, but better safe than sorry.

Thankfully, another huge blessing we have in our lives is great insurance for Asher, so I'll be calling tomorrow to see about setting up the x-ray.  I honestly don't even know how that works, so I guess I'll just call his PCP and see what she says.

I leave you (hopefully not for another three months this time) with a picture of Asher on Halloween:

Cutest mailman EVER

Limbo

If you're wondering where on earth this blog went, it's a long story.

The short version is that I didn't have the domain set up for auto-renewal, so it expired.  GoDaddy then wanted to charge me nearly $100 to "retrieve" it (for an $11.99 domain!). As soon as the "retrieval" period was up, they bought the domain so that I couldn't buy it back at the regular rate.

Anyway, I'm bitter about that.  So I stopped blogging here for a bit.

I'm getting over it, though, so hopefully I'll be back to blogging once Asher returns to school next week, even if it's not at my .com address.  :)

Last day of preschool

Today Asher wraps up his first year as a preschooler.  Well, his first partial year, anyway.  I still can't believe how much he loves it.  Most kids look forward to the wondrous break that is summer, but Asher will probably be bummed.  Silly guy.  We're celebrating the end of the year with a snack at his school.  Granted, he can't actually eat the snack, but celebrating with friends is always fun nonethless.  :)

p.s. if you've stopped by from Hip2Save, hi!

Things are changing... again.

Yet another long while since I've posted an update.  Too long.  One of these days I'll figure out a system.

Asher is still doing wonderfully in preschool.  He loves it.  He comes home with a good report every day, and he's always in a happy mood.

On the negative front, his physical therapist has left her position here in Clarksville and is going back to work at Vandy.  That pretty much sucks since there is no one else in town to take him to, not to mention that she was wonderful.  For now we will just be working on a home regimen until another PT comes to the area.  I know who I want to come, but even if she does decide to come here it will be a few months before that happens, so "Mom, PT" it is.

(and for the record, I'm not fooling myself into thinking I can actually do a PT's job, but I do think I can do at least some things considering my son is my only client, lol)

So that's that.

If you know of any good books or websites re: working with children who have movement disorders, let me know.  I have this one, but that's it.

My preschooler!

Asher has completed his first two weeks of preschool.  It's quite surreal to drop your three-year-old off at a local elementary school and then come home to... quiet.  His school day is five hours long, so it's quite the span of "me time."  I still don't know what to do with it!

Asher is doing fabulous.  I mean really.  Not, "I'm a mom so of course my kid is awesome."  He has seriously had one bout of fussiness, one afternoon, and that's it (well, and he did whimper for the first 10 minutes of his first day, but I'm not counting that - because I AM a mom and of course my kid is awesome - lol).  He comes home in a happy mood, and his communication folder has always had a note about how great of a day he had.  It rocks.

They've been doing the Icky Alphabet, Iggy Iguana, gray and purple, G/H/I, and of course various learning centers.  He came home Friday with some remnant green paint/marker on his hands, so he's been having fun with art, too.  Occasionally the kids get to go to the "treasure chest" and pick out a toy, I assume as a reward system.  Asher has two treasures so far.

He did miss Wednesday for a dentist appointment, which was quite traumatic - but that's another post for another time.  ;)

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.