Wordless Wednesday: Happy Fourth Birthday Fletcher!

Ebates Link Problems

I've just been informed by more than one person that they signed up for Ebates using my link and it did not credit my account. I recently sent an email to friends and that link seems to be working. So if you did sign up through this blog post, please email me at esmykay(at)yahoo(dot)com and let me know (with the email address you used to sign up) so I can call Ebates and get it straightened out. Thanks!!

Help Fletcher Win an iPad!

A few months ago I posted on the incredible things the iPad can do for people with special needs. As the months go by, more and more of Fletcher's "virtual friends" have gotten theirs and it has opened up a whole new world. Check out what Caleigh, Daniel, and Nathan can do.

I can't wait until we can get Fletcher his very own. Problem is, with the new minivan and a few other unexpected expenses, money is even tighter than usual, so you can imagine my excitement when I read that Ebates is having a membership drive and one of the prizes is a FREE iPad!

If you don't know about Ebates, and you shop online, you are missing out. Ebates is a shopping site that gives you a percentage of money back each time you make a purchase at one of their participating stores. The stores pay Ebates a commission to send shoppers their way, and they pass along a portion of that commission to you. Simple as that. No fees, nothing to mail in, no minimum order requirements. I've been a member for a couple of years now, and have earned about $100. For doing nothing more than clicking an extra button or two.

In order to be eligible for the iPad, I have to refer at least 50 new members. I know many of you already belong to Ebates, but if you don't, please consider joining by clicking on this link (which will take you to the Ebates site and give me credit for my referral) before September 30th.

Thanks for checking in on us, and thanks for your help. Happy Shopping!

Back by Popular Demand

I've been taking a blogging break this summer and, at times, have thought about retiring the old blog completely as often it has turned into "just one more thing to do," if you know what I mean (and if you have a blog, you know what I mean). Although you may not have noticed, since my posts aren't exactly regular in the first place.

But, my faithful readers (all two of them) seem to kind of miss me, so I guess I will try my best to put up a post here and there.

It has been three months since my last post, so obviously I have much to report. Some good. Some very, very far from good. However, I'm not ready to get back into the blog quite yet. So, at the very least, I thought I would take a quick second to include a link to an insightful post from Kate, a teacher of learners with multiple special needs, titled Living the Least Dangerous Assumption, which discusses the idea of presumed competence. I think this is the single most important gift you can give a person with special needs. Reading the post, particularly her list of ways you can live the least dangerous assumption, is well worth your time.

I'll leave you for now with a blurry, yet cute, little candid I shot the other day of Trevor reading to the kids.

The Kidwalk Parade

Still no time for a proper update, so I thought I'd share a couple of videos about what we have been up to around here (and when you see the mess of a house I have been keeping in these videos you will understand why I need to do some of the things I will be doing instead of a more in-depth entry).

First, I would like to share some footage from this morning of what I call the Kidwalk Parade. For those PTs who may be reading, please disregard things like positioning and form. We just got the Kidwalk and have been putting Fletcher in it for short periods of time and just trying to have some fun so he'll like it, and then we are going to start working on form, etc. And fun they were having. I took this video about five to ten minutes into the "parade," so Fletcher is starting to drag a bit (literally and figuratively) as is Audrey (just literally... why, I still am not quite sure).

The second video is also from today. Audrey has been pulling up on things for probably less than a week, and this morning I caught her during what I am pretty sure was her first transition from one object to another. Pretty exciting stuff for this momma.

It is Cerebral Palsy Awareness Day and hello, world, my child is not a tragedy

Trevor has been working a lot lately, and the last thing I should be doing while he is home is burying my nose in the computer, but I was inspired by this post by Ellen to spread a little awareness today. So inspired, in fact, that I totally plagiarized her title word. for. word. (which, apparently, is something I like to do).

I am also going to plagiarize her message, which, in a nutshell, is that people with cerebral palsy are so much more than their diagnoses. Before I had Fletcher, I had no personal experience with it. In fact, as I think I have mentioned on here before, the only person I had knowingly seen with cerebral palsy was Blair's cousin from Facts of Life. Seriously. I didn't realize that CP is just an umbrella term that refers to someone who has muscular and postural abnormalities due to brain injury, that it can be as mild as dragging a foot or as severe as to require total care for life. They have a good general overview on the Centers for Disease Control website.

True, Fletcher leans more toward the severe side than the mild at this stage in his development, and that may never change, but he is still so, so much more than his cerebral palsy. He is a bright, happy, inquisitive, social little boy and I want everyone to see that side of him. Which is why I blog in the first place.

I will never forget a comment on this blog I received from Laura (which I don't have time to go back and find to quote exactly) to the effect that reading this blog and learning about Fletcher's life made her realize for the first time that a happy and full life can coexist with a cerebral palsy diagnosis, which her son recently had received. And that is exactly the message I want everyone to hear.

Nine Months

Audrey is nine months old today (which happens to also be Aunt Niki's 31st birthday... happy birthday!) and I thought it was high time that I caught everyone up with the latest on Little Miss A.

As you can tell by the photo, in addition to one of many outfits given her by her generous, zebra-print-loving Aunt Angie, she is also rocking two teeth, with more to come any day now if drooling is any sign. She is on the brink of holding her own bottle or sippy cup, eats lumpy purees, and will hold and chew on teething biscuits and crackers. The other day I read something about kids developing a pincher grasp at about her age (who knew?), and thought, hmm, wonder if Audrey could do that. So I put her in her high chair and gave her a few cheerios, and sure enough, pincher grasp. Man, those developmental milestones come so easy for typical kids!

Speaking of being surprised by a typically developing child, a couple of months ago I met my mom and my sister for dinner. As usual, I was holding Fletcher for the meal and asked my mom if she would hold Audrey, as she was getting too big for her infant carrier. She just looked at me with a puzzled look and said, "you know, she could sit in the restaurant high chair." Um, no, I hadn't even considered that! Fletcher does not have enough trunk strength to sit in restaurant high chairs, or shopping carts, or things of that nature, so it never even dawned on me to put Audrey in one! In fact, Trevor just got back from a trip to Lowe's with Audrey (he is attempting a DIY plumbing project, be very afraid) and mentioned how much easier shopping with a kid is when you can just plop them in the cart.

When not moving around via cart, or double stroller (which was worth every penny of it's overpriced price tag), Audrey is doing a pretty good job of getting around by herself. She has been pushing up on hands and knees and rocking for about a month now, and doing a good job at scooting backward, but had not yet gotten the confidence or coordination to pick a hand up and move forward. That changed last week, and each day she is getting more and more mobile. She loves to move from belly to sitting and grab at whatever she can get her hands on, her favorites being cords and shoes.

She is still a good sleeper at night, decent napper, and generally good natured. She is loud, and inquisitive, and loves crawling all over Fletcher, who tolerates her, most of the time. She also loves the dog, who, despite her sometimes over exuberant petting, also tolerates her, most of the time.

We don't have her nine-month well-baby appointment until later this month, so I don't have any stats for you, but she still seems to be growing like a weed with no sign of falling back onto the growth charts. She is wearing mostly 12 to 18 month clothes, and I have gotten a couple of 24 month items for the summer. So yeah, still big, and with plenty of nicknames highlighting that little fact; "Big Momma" and even "Fat Momma" being some of the more common. We stayed with Trevor's Aunt Shelly for a couple of days last month and she was not a "big" (ha) fan of the nicknames, and, even though it is all in good fun, I understand why. I am actually trying to get away from calling her such things as she develops better receptive language skills. I mean, I just posted a video on the power of words, so I should understand.

But it is hard, because she is such a cute, chubby little thing. And, to me, every little inch of that chub is something to celebrate. It means that instead of being burned up by inefficient lungs or by high-tone muscles or other struggles her brother has to face that causes him to be rail-thin, her calories can actually go to a little baby fat because she enjoys the benefits of a healthy central nervous system. And, all seriousness aside, there is no denying it: the girl's just chunky.

Flashback Friday: Fletcher's Third Birthday Video

I have really gotten behind on my posting, and I have this thing about really wanting to keep this blog in somewhat of a chronological order (in case one day I actually get the motivation to turn it into a keepsake book), so I am trying to start a habit of posting "Flashback Fridays" every once in awhile where I do a post and backdate it to the original chronological date and then link it to the present post.

I am starting with Fletcher's Third Year Montage, which I started in December and finally got around to editing last month. You can find it at the end of this birthday post. If you are new to the blog and want more adorable photo montages of my boy, you can check out his First Year Montage here and Second Year Montage here.

Why the word Disabled does not apply to Fletcher

I just lifted this video from Ryn Tale's. It is pretty long, just over twenty minutes, but if you have the time, watch it all the way through, or, if not, even the first couple of minutes. If I could have the general public learn one thing about kids with special needs, it would be this.

Cheetah Girls

Today we want to wish Cousin Maren a very Happy Fourth Birthday! Maren is the big sister Audrey and Fletcher never had and is great at helping feed Audrey her bottle, singing Twinkle Twinkle Little Star to both kids, and also makes for a great sous chef when I am scrambling eggs for Fletcher in the morning ("my grandma always lets me stir the eggs in the skillet when it is on the stove," um, sure she does).

A couple of days ago I may have casually mentioned to Aunt Angie, who was on the way to the mall, that Audrey was rapidly growing out of all of her clothes (wink, wink). Well, Aunt Angie, being an excellent personal shopper for all of her nieces and nephew, couldn't let that continue, and showed up at lunch with a bag full of outfits, including this cute cheetah print ensemble.


Apparently Maren must have took special notice because the next day my mom had stopped by a resale shop to look for puzzles and Maren ran straight over to the dresses, found one with a cheetah print, and insisted that my mom buy it so she could match Baby Audrey. Then, as soon as they got home, she called me and asked if I could bring Audrey over so they could both wear their cheetah dresses.

Of course I came right over. Who could resist a photo shoot with such cute models?

Succumbing to Apple's Siren Song?

I've never been a techie, or a gadget person, or a computer geek, or any other term that may be used for someone up on the latest technological trends. In college and law school, while many of my *cool* friends complained about the PCs in the computer labs (yes, I went to school before everyone owned laptops and there were designated rooms here and there containing a couple of rows of PCs) and insisted on using their own Macs, I couldn't have cared less. Yes, I did have a blackberry for years, through work, but as soon as I stopped working I immediately got a plain phone, no email, no Internet access, in fact, I don't even text.

I am not anti-technology, and I guess by even having a blog I have embraced the technology trend a bit, but I have never had the slightest impulse to get the "latest and greatest" gadget. Which, lately, at least to this layman, seems to revolve around Apple. Nope, no iPhone for me, and no iPod or iTunes for that matter, either.

But, times might be a changing, and I am finding that I may not be able to resist Apple's newest product. I can hardly believe it, particularly as we have been majorly pinching pennies around here, but I am seriously considering getting an iPad... for my three year old.

Before you think I have totally lost my mind, check out this post discussing the impact the iPad may have on the special-needs community. It is so rare to have a mass-marketed device that can also work as a tool for someone with special needs. So exciting!

Wordless Wednesday: Less than Zero

Twas the Season

Seems like the Christmas Season came and went in record time this year. Like many others we kicked things off late-November by putting up the tree. Trevor had to catch an early flight out the next morning, so he went to bed early with the kids and I invited my nieces over to watch the Grinch Who Stole Christmas and decorate the tree.

As always, Alexa was a big help.

But I guess I waited too long to start the movie as Maren had crashed on the couch by the time I got done assembling the tree.

The First of December is all about Fletcher's birthday, but by mid-month we got back into the spirit by joining my sister and brother and their families for Santa at T-Rex (yes, the same place we had Fletcher's party). For any in-town readers, I highly recommend it. They had a pretty good "knee-high" buffet which was set up so kids could fill their own plates, and was by reservation only, so while full, it didn't seem too packed. I guess it helped that our party was big enough to fill an entire banquette, giving us our own private nook.

They had raffle prizes and carollers, and the dig-zone was free, but one of my favorite parts had to be Scuba-Santa.


They also had a dry Saint Nick who was not only one of the most authentic-looking Santas I have seen, but he was also very sweet to Fletcher, taking extra time, despite the long line, to tell him he was special and that Santa loved him very much.

Although the sentiment may have been lost on Fletcher as daddy had turned away and Fletch thought he was leaving.

We went to Candlelight Christmas Eve Service in the afternoon, because a blizzard was forecast to hit in the evening, so we spent the night cuddled on the couch with the kids in their traditional Christmas Eve jammies made by Grandma Adams.


Fletcher and I both came down with head colds, which means little sleep for him and even less for me, so Trevor gave me the gift of sleeping in on Christmas morning (which I realize I can only do with little ones who don't quite yet know how exciting Christmas morning can be).

The kids loved opening their gifts, mostly because they both love ripping paper. But the toys were left untouched as Dad wanted to go outside and enjoy the benefits of the White Christmas.

At the starting line (which you may recall from years past, is the top of our driveway).

I think Trevor only took them down together once or twice. The sledding part is fun, but trying to maneuver two kids and a sled up an icy hill/driveway can get pretty dangerous (of course I was there to assist when not playing camera-man).

After sledding and naps, we headed over to Angie's house for dinner with the extended family. Any guesses what Trey wanted for Christmas?

We do have one more extended family party this Saturday, but otherwise that just about sums up Christmas 2009 for the Smykays, except I left the best for last. Fletcher gave me the best belated Christmas gift a couple of days after Christmas. We tried to recreate it tonight after dinner (Chinese, thus the rice grains all over his neck and shirt), and although he had the hiccups and wasn't quite as "on" as he has been the last couple of days, and his accomplishment is kind of overshadowed in this clip by my loud, congested giggling, I think you'll get the gist.

Merry Christmas

"Today in the town of David a Savior has been born to you; he is Christ the Lord."

Luke 2:11

Off The Charts

Seems like just yesterday I was typing this post. Oh, how fast babies grow. Especially full-term babies. Especially my full-term six-month-old baby girl who just happens to be, oh, the size of an average one-year-old boy.

Yes, it is true, my little girl weighed a whopping 21lbs 1.8oz and measured 27 7/8 inches at her six month well-baby appointment last week. Fletcher's three year well-baby appointment was at the same time and he weighed 24 pounds and measured 33 inches. So, for those of you who haven't memorized the infant growth chart, this means that both my kids are off the charts... in opposite directions.

Our ped office gives us handouts at each well-baby appointment which contains general developmental information and the like, and they have a space for the weight and height of the child at that particular appointment, and it was kind of funny to see two "greater than 97%" on one handout and two "less than 3%" on the other.

Fletcher has been at 24 pounds for a long time now, and when Audrey was born I used to joke that she would reach 25 pounds before he did... doesn't seem like much of a joke now. Luckily, they are both following their own growth curves, and while I would love to see a bit more weight on Fletcher, he eats well, is healthy, and is actually in the 50-60th percentiles on the CP growth chart. And Audrey, well, she is proportionate, and will no doubt slim down a little as she grows more mobile. Neither the ped nor I see any real cause for concern with either kid's growth at this point. I guess it is just another way my kids are polar opposites.

But they definitely have cuteness in common!

Wordless Wednesday: Santa

Happy Third Birthday Fletcher!

Three years old. Wow. I didn't know if I would get three days with my precious baby boy, and, in a blink of an eye, here we are three wonderful years later.

Fletcher started off his birthday with his first day of preschool. At age three, children with disabilities or developmental delays begin receiving services from the local school district as opposed to early intervention through the county. Our resident district actually provides in-home services to kids like Fletch, so it will actually be close to the same story, just a different cast of supporting characters. Both Fletcher and I are doing surprisingly well with the transition. We will miss "our" old therapists a lot, but I managed the goodbyes without many tears because I truly think (and definitely hope) we will continue to keep in touch with them (if no other way, at least through this blog).

King for a Day (or is that every day).

Love the crown as much as we do? Our friend Melanie from Better Than Normal makes them and all proceeds go toward costs of therapy for her son Daniel.

Trevor got home around noon, just in time to take the kids while my mom and I made Fletcher's birthday cake. We were having a family party at T-Rex, a dinosaur themed restaurant similar to Rainforest Cafe, and yesterday afternoon my six-year-old nephew Trey challenged me to make a volcano cake. Well, it was not so much of a challenge as an assumption ("so, are you making a volcano cake for Fletchy") but nevertheless, I couldn't let him down now could I?

Voila, a smoking volcano cake.

Yes, another family picture. But you know what, I am not going to apologize for it, because when you work as hard as I did to build your family, I think you earn the right to take, and post, family pictures at every opportunity. That said, why does it always look like I am some big behemoth towering over Trevor in all of these?

The Usual Suspects

And, for your viewing pleasure, Fletcher's Third Year in pictures. Please make sure your speakers are on for the audio.

Make video montages at www.OneTrueMedia.com

Happy Thanksgiving

The Smykay Family has a lot to be thankful for this year, including the fact that Trevor actually had the holiday off work to spend with the family. We had a great time at Grandma Adams's house with the extended family enjoying food, fun, and most of all, each other's company.

Since it was Audrey's first Thanksgiving, we decided to dress her up to suit the occasion. Okay, I am stretching the truth a bit. If it was up to me I would have just pulled something out of the closet. We have Aunt Angie and her shopping habit to thank for her cute, festive ensemble.

To make the day even more special we decided it was the perfect occasion to offer Audrey her first taste of solid food (good old rice cereal, if you can call that a solid).

Not surprisingly given her interest in other people's food for the past couple of weeks, she sure seemed to like it. Cousin Alexa even got in on the action, but Audrey thought she might need a little help, so her first spoon feeding even included a bit of self-feeding.

A fun and relaxed holiday to remember. It was even capped off by a practical joke. You know in college how it was always so funny to take a magic marker to the face of the first person to pass out at a party? Well, seems like Uncle Jay hasn't really matured past that particular phase and he surreptitiously altered Audrey's bib while pretending to help her with her vibrating teether...

Prematurity Awareness Day

Today is Prematurity Awareness Day and I would love to share Fletcher's NICU story. But I have been so busy, and his stay was so long, 90 days long, and so much happened in those 90 days that I could type for hours and only scratch the surface. So many people think that preemies are just mini-newborns that just need a little extra time to grow. That all of these cute teeny tiny babies "catch up by age two." Oh, how that could not be further from the truth (at least in the case of "micropreemies" weighing less than 1500 grams at birth, such as Fletcher). Pre-mature means just that. At birth, these babies are not yet mature. No part of them. Their lungs, skin, digestive tract, eyes, brain... every system is affected by prematurity.

I would love to raise awareness of the effects of prematurity by sharing Fletcher's NICU story, but I have been busy preparing for and attending an eligibility meeting with the school district to determine if Fletcher meets the requirements for special education preschool. The accompanying report states that "Fletcher does not demonstrate age-appropriate skills across all developmental areas" and concludes that the district will need to provide "occupational therapy, physical therapy, early childhood special education service, speech and language therapy, vision services, and assisted technology."

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy assisting Fletcher this morning during his special instruction and vision therapy with his EI therapist and his new ECSE through the school district.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy this afternoon taking Fletcher to aquatic therapy with his physical therapist.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy coordinating tours of special needs preschools, including one we are visiting tomorrow morning.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy scheduling appointments including the hearing screening tomorrow required by the school district.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have been busy tonight attending a Parent Advisory Council meeting at the hospital where Fletcher was born with the hope of helping parents of future NICU babies find the support that they desperately need.

I would love to raise awareness of the effects of prematurity by sharing his NICU story, but I have to stay up until Fletcher is sound asleep and hook up a machine that applies gentle pressure to his core muscles throughout the night in the hope of preventing future muscle and bone deformities.

And this has been a fairly typical day. You see, for some people, the effects of prematurity extend far, far beyond the NICU.

Welcome Audrey

I have officially closed Audrey's blog and going forward will use this blog for both kids. I guess I could change the name to Smallest Smykays, but that seems like a lot of work for one little letter. Head on over to Smykeeny Baby Blog one last time to check out a video montage of the littlest one during her first month.