reading is fun

Just ask Asher.

The Homeschool Library

To answer your first question, no, we haven't decided to homeschool Asher.  ;)

That said, there have been some things happening within our school system lately in relation to the special ed department that make me somewhat uncomfortable.  I'm not one of those people who believes that just because something happens to one person it will automatically happen to me, but I'm also not one of those people who thinks it can't.

Asher will enter into the special ed pre-k program in March (after his 3rd birthday).  I truly think it will be good for him to be around other kids and other adults in a new environment.  The question is, what will we do when he's older (K, 1st, 2nd?).  I want Asher to receive the best education possible, and unfortunately, sometimes that doesn't happen in the public school system.

To be clear, I am not dogging on public school in general.  My husband is a teacher, I used to be a teacher, and both of us were educated entirely as public school students.  The problem is that far too often schools are understaffed and underfunded, and when you have a student with high needs such as Asher, sometimes those needs are set aside simply for lack of resources.  And we're not even there yet.  This is entirely theoretical.  I just want to be prepared for whatever comes my way, so I'm starting to build up a homeschool library.  Some of the stuff won't be used till later, but if it's on sale, why not?  ;)  These are my finds from yesterday:

Counting 1-20 and Tell the Time (w/ wall charts and write-n-wipe pages)

Write & Slide Math (w/ write-n-wipe pages)

Peter Rabbit connect-the-dots book

Scholastic First Dictionary


Now I'm Reading phonics book sets (1, 2, and 4... they were out of 3)

And there you have it.  Like I said, I'm not really limiting myself by difficulty level if I see a bargain deal, so it's a mish-mash of pre-k to 1 stuff.  Ideally, Asher will receive a wonderful education at school and these can just be supplementary materials for practice at home.  It's win-win the way I see it.

Oh, and as far as your second question: will Asher even be able to do some of these things?  I don't know - but I have no reason to think he can't, so he will be presented with every opportunity.

Nomming

http://vimeo.com/moogaloop.swf?clip_id=12121233&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1

Check it out!  Today we had lunch in Target's little cafe, and look who decided that turkey and provolone sounded good to him!

(my apologies about the quality - Chad shot the video on his phone, and then his phone refused to send it out because the file was too big, leaving me no choice but to take a video of the video  :/)

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.  ;)

and just in case the sunglasses fail...

teehee.

cool dude

Asher has always been very photosensitive (sensitive to light), so going outside with him on bright days has always seemed like more of a frustrating experience for him than an enjoyable one.
The solution?

Epic coolness.

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.

the balancing act

Well, it's finally happened.  I knew this day would come, but I held out as long as I could.

Asher is officially in therapy five days a week.  In the long run it's actually a better schedule for us than what we were doing, but it was always nice having that one day "off."

He's bumping up to twice a week feeding appointments (which he really needs), so he'll be seen right after speech on Monday and then again on Friday.  Though I'm losing my day, it really helps me out because Tuesdays had a weird gap in them between feeding and PT, so that makes things easier there.

Then again, our PT time isn't officially "locked in" yet.  We're going week-to-week right now, it just happens that Tuesdays and Thursdays are working out... hopefully we can secure that as a regular time slot soon.  As much as I liked having a free day, it's really easier to manage if I'm not juggling multiple appointments at multiple locations in the same morning.

prayer request

If you're my facebook friend, you've seen me post about this little girl before.  She went in for open-heart surgery about a month ago, and things have been a whirlwind ever since.  She's coded twice before - once for over an hour.  Despite all this, God has done some amazing things.  Things like a CT scan of the brain that came back normal despite being "dead" for an hour.  Her family has seen moments of literal miraculous healing.

However, she is once again very sick and in need of your prayers.  They are concerned she might be septic, which could be devastating.  Please pray that God would have His hand over this precious little one.

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.

KidWalk

Asher was able to get in it after all!

We would need to finagle the adjustments on it a bit more if he were to get one, but I liked what I saw today!  He made some walk-like movements and managed to propel himself backwards.  Hopefully we'll get to test it out some more in a couple of weeks (his PT is off next week, but the company that is letting her try it out is supposed to let her keep it through the following week).
Here are a couple of pics:

Playing with Ms. Ellen.

His knees are bent here because he was being pushed forward and he leaned on his tip-toes... it was positioned at an appropriate height.

I was reminded again today that the school system will require Asher to have "three positions" that they can have him in during the day, so this could very well be an option for us in the coming months.

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*

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.

just a little note to say...

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

decisions

We're having to make a decision regarding equipment with Asher.  We were told today that, more than likely, our insurance will only pay for one mobility device every 3-5 years.  I really want to get Asher a Maclaren Major special needs stroller (shown to the left).  Frankly, he doesn't need all of the support that most wheelchairs offer because he has pretty good trunk and upper body control - intense positioning isn't needed.  I like the stroller option because it's light, portable, and very non-invasive.  It hardly even looks like special needs equipment.

That said, it's a stroller.  He wouldn't be able to manipulate it himself like he would a wheelchair.  Our hope, of course, is that that becomes a moot point because he will begin walking; however, if he doesn't, then we would be stuck with a stroller and not be able to obtain a wheelchair (which, by the way, can run well into the thousands).

I think the stroller he has now holds up to 35 pounds, so we've still got about 10 pounds of wiggle room.  And really, if we wanted the Maclaren that badly, we could afford it out-of-pocket.

The problem is that I don't want a wheelchair.

I know.  I suck.

But you see, it will be quite awhile before Asher would be able to direct himself anyway.  And I really, really think he'll walk.  But then you have that giant "IF" cloud hanging over you, and the last thing I want is for him to be in the first grade and not have a way to move himself from point A to point B without assistance, even though he would be capable if he had the right equipment.

Sigh.

There is one wheelchair by Convaid (shown here, though I think I prefer the version that has planar seating... it looks comfier to me) that I like because the big wheels come off and it converts to a stroller, so you kind of get the best of both worlds.  I could live with that... BUT - and you knew there'd be a "but" - the smallest one they have (12" seat) is meant for kids who weigh at least 44 lbs according to one retail website.  Maybe that's wrong??  The Convaid site has all the measurements on it, but I don't have the first clue how to translate all of that.

Another sigh.

Any experienced folks out there with advice?

new places, new faces

Today Asher had his evaluation with his new physical therapist at High Pointe Rehab.  She was great!  It was mostly a Q&A session, but she has a lot of experience and I just get a sense that she's really good at what she does and is really dedicated to her patients' rehabilitation.

As it turns out, I won't have to sit in the waiting room for the entire time - she prefers if parents come back and watch the things they are working on (completely up to me what I want to do, though).  I'll probably spend most of the time back there but will occasionally catch a respite and read a book or something.

All in all, I'm excited about the things to come.  :D

craziness

Sorry for the lack of updates.  I'll be back tomorrow with a pertinent post, I promise.  Our state has suffered a catastrophic flood and everything surrounding that has been distracting me.  This picture is what our church looked like on Monday.

You can see more pictures here.

We are all safe and sound - and dry!  Please pray for those who aren't and for the families of those who have lost their lives (18 across Tennessee, I believe).

If you're local, be sure to join the facebook group to offer assistance to those in need, or ask for it if you or someone you know is in need.

and they called it... puppy loooooove

http://vimeo.com/moogaloop.swf?clip_id=11416487&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1

When I was pregnant with Asher, the occasional person would ask me, "so what are you guys going to do with the dog once the baby comes?"

I always thought this was a silly question.  What were we going to do with the dog?  Err... nothing?  I think it was just assumed that tiny babies and 75 pound Boxadors did not go together.

Au contraire.

Sebastian has always been SO good with Asher.  If Asher's doing tummy time on the floor he steps gently around him (actually, he prefers to just not go near him then).  He sniffs his head, and from time to time gives him a hearty lick.  He's just great.  They're buds.  And now Asher's to the point where Sebastian excites and interests him, and he wants to pet him and tug on him - which Sebastian tolerates beautifully.

I've always believed pets (and animals in general) are good for the soul.  They teach us something about life and God that another person simply can't - there is something about them that remains pure that has been long tarnished in humanity.  I'm glad Asher has Sebastian and the trio of felines to show him things that Chad and I can't.

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.