Smallest Smykay

Wordless Wednesday: Happy Fourth Birthday Fletcher!

2010-12-01T22:53:00.002-06:00

Ebates Link Problems

2010-09-10T11:40:00.002-05:00

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!

2010-08-24T14:46:00.003-05:00

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

2010-07-21T16:10:00.006-05:00

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

2010-04-11T00:01:00.004-05:00

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

2010-03-20T15:17:00.007-05:00

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

2010-03-11T15:07:00.003-06:00

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

2010-03-05T22:27:00.000-06:00

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

2010-03-03T12:54:00.005-06:00

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

2010-01-30T01:00:00.006-06:00

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?

2010-01-27T21:07:00.003-06:00

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

2010-01-13T17:52:00.001-06:00

Twas the Season

2009-12-29T22:19:00.007-06:00

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

2009-12-25T10:37:00.004-06:00

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

Luke 2:11

Off The Charts

2009-12-18T22:51:00.015-06:00

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

2009-12-16T21:13:00.001-06:00

Happy Third Birthday Fletcher!

2009-12-01T22:58:00.007-06:00

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

2009-11-26T23:37:00.000-06:00

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

2009-11-17T00:41:00.003-06:00

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

2009-11-14T14:53:00.003-06:00

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.

Mobility

2009-11-05T22:20:00.001-06:00

Things have been understandably hectic around here (mostly in a good way) and my computer decided to take a vacation, but it is back, and I am going to try once again to devote a little more time to updating the blog.

The kids couldn't be more different in so many ways, but today they both worked toward a common goal: mobility. While neither of my children are independently mobile at present, they both spent a little time today working on their motor skills in their own ways...

Bittersweet

2009-10-02T22:39:00.002-05:00

Audrey surpassed Fletcher in a motor skill this week. It was only a matter of time. She rolled over from supine to prone (back to front). It was amazing, thrilling, and, well, a little sad. It is crazy just how differently her body moves compared to Fletcher. It is just so easy.

I thought that prone to supine usually came first, but what do I know about typical development. Trevor was on a trip, so I called him with the exciting news and he informed me that she actually did this a couple times for him a few days ago and he must have forgotten to tell me... men.

Sorry for the prolonged silence and lack of recent pictures. My laptop is on the fritz, with the pictures tucked safely (I hope) inside. Maybe someday I will rescue them. In the meantime I am taking it one day at a time as Trevor has been working a lot and Fletcher is going through a SUPER CLINGY phase (at least I am hoping it is a phase).

Along with his clingy-ness, Fletcher has been throwing the biggest temper tantrums when I leave him alone in a room, especially at night when I go upstairs to put Audrey to bed. I mean cry-and-scream-at-the-top-of-your-lungs-till-you're-sweaty-and-snotty-and-hoarse tantrums. They have been pretty intense for the last month or so, but have gotten particularly unbearable since his surgery (adenoids and ear tubes) a few weeks ago followed by an out-of-town trip for me. Don't know if either of these things are related to the severity and frequency of the tantrums, or completely coincidence. Because he is non-verbal, I can't tell if he is just displeased that I am tending to Audrey over him, or if he is legitimately scared when I leave the room (after all, I am his arms, legs, and voice). I want to treat him as normally as possible, which includes disciplining him when appropriate, but I also want to respect any legitimate anxiety he may be feeling. It is really a tough line to toe.

Wordless Wednesday: For the Birds

2009-09-02T00:24:00.001-05:00

A Couple of Links

2009-09-01T23:30:00.000-05:00

I know, I know, I need to do an actual post, but by the time I find the time to write, I am too tired for original thought. So, in an effort to post something to the blog, I'd like to share a couple of links.

First is a blog post by my friend Katy, and yes, it is not the first time I have linked to her (and likely not the last... I like the way this girl thinks). She recently did a post on some beliefs she has come to hold as a parent to a child with special needs. I hold many of these same beliefs. Although a part of me wishes I had read this list earlier in my special needs journey, I think many of these beliefs come only through experience and can't be fully appreciated unless you learn the lesson yourself.

Second, while the focus of this blog, at least now, is cerebral palsy and how we are choosing to deal with it, another big factor in Fletcher's life, and mine as a parent, was his stay in the NICU. Disabilities aside, going through the NICU experience itself was a stressful and life changing experience during which support was crucial, as discussed in this recent New York Times article.

Some people prefer personal face-to-face support, which is one reason why I am excited about the new March of Dimes sponsored parent support group at the NICU where Fletcher lived for the first three months of his life. Other people, me included, turn to online support groups. I have gained invaluable information from online groups consisting of other mothers of micropreemies or children with cerebral palsy. In fact one of the moms quoted in the article is in one of my online support groups and is a tremendous resource and support.

No New Post

2009-08-23T22:57:00.002-05:00

But I have added pictures and more detail to our authentic Chinese restaurant experience on Trevor's Birthday. Check it out!

Still Here

2009-08-22T22:48:00.004-05:00

Where has the summer gone? It has been a busy one around the Smykay house.

I began the summer backlogged on blog posts, and now I am even further behind. I still need to post the run-down of Fletcher's last stem cell injection and I also wanted to write about a few of the fun things we did while in China, as well as an update post with any improvements stemming (no pun intended) from the treatment. Soon after our return Audrey was born, which I actually did manage to write about on the Smykeeney Baby blog. The three weeks or so thereafter we spent holed up in the house figuring out the whole newborn thing. Next I was treated to a really fun girls weekend when some college friends from Texas flew in to remind me that there is life beyond babies. Then came two family reunions and two road trips in opposite directions, north to northern Illinois and south to southern Texas. And in between we've managed to attend an ABR training session, get a new PT/aquatic therapist and speech therapist, and have lots of fun.

Trevor is in town for a couple of days, and my goal is to write at least one post a day during this time in an effort to catch up. Of course my other goal is to clean house... wonder which one I will get to first?

And since no post is complete without a photo or two, here are a couple of Fletcher's first experience with corn-on-the-cob. Up to this point I was a little concerned that corn would be too hard for Fletcher to chew. But we were in Dallas at Trevor's aunt's house, the corn looked great, and I thought why not try it. Never would have guessed it would be such a hit!

And, of course, being a "special needs momma" I can't just leave it at my son likes corn. I must turn it into therapy, so I am thinking that there may be some way to configure the cob-holder-thingies to encourage wrist supination, or at least discourage pronation, no?

(Written) Wordless Wednesday: Swimming

2009-07-15T22:41:00.005-05:00

Wordless Wednesday: Siblings

2009-06-17T02:27:00.002-05:00

If you want words and more pictures, go here.

Big Brother

2009-06-11T23:01:00.001-05:00

Fletcher is a big brother! You can meet his little sister here.

So Mad I Could... Twitter?

2009-06-03T15:34:00.002-05:00

I made my first tweet, and it was in anger. Well, not anger as much as frustration, really.

Trevor recorded a "Special Investigation" segment on CNN about stem cells. Central to the segment was a family with a terminally ill daughter who will be treated in August at the same facility at which Fletcher received treatment. Well, as usual, the story focused on these desperate parents throwing all logic out the window by traveling to another country for medical treatment (gasp!). That is not the part that frustrated me. All stories about stem cells have this dramatic bent and I have gotten used to it.

The thing that got to me was that the anchor said that the family told her they will be using EMBRYONIC stem cells in China and then the piece goes on to interview a stem cell researcher in Temple, Texas (I think he was affiliated with Texas A&M) who made a big deal about using embryonic stem cells and how that is bad and how treatment with adult cells is yielding good results and is available in the US. And that going to other countries (while he admits he doesn't know squat about the programs in such countries) is a categorically BAD idea.

Those following this blog carefully already know why I am frustrated: Beike uses ADULT stem cells NOT embryonic. So while the piece made it look like pursuing the very program we pursued was a bad idea, if you really know the facts, the on-air expert was in a sense advocating for the program (although unknowingly, which is another aspect to my frustration, the fact that no doctors in the US even bother to really investigate these foreign programs they bash).

Then the piece goes on to interview some random (and, according to the vibe given off by the piece, bogus) doctor that has a stem cell practice in Peru, further damaging the credibility of Beike.

In the CNN anchor's defense, I suppose she just took the parents word at face value and they were the ones confusing embryonic and adult stem cells (which can be a confusing concept) but this was an investigative piece, so don't you think she could have done some actual, ahem, investigating? Also, they said they contacted Beike and had not gotten a response, so I suppose some of the fault lays on them as well. Beike doesn't seem to have a polished media liaison at the ready, which I think is actually doing them a disservice, but also points to the fact that they are a medical lab, not snake oil salesmen, and are more interested in the science.

So, when the CNN anchor solicited comments via twitter, I thought it was time to tweet. I have an account that I opened to follow a couple of fellow bloggers, but had never even checked it. I went to the help section and found out about "reply" tweets and I was set. I resisted the urge to be confrontational and tell her to stop sensationalizing everything and get her facts straight and instead just told her that she should be advised that Beike in fact uses adult and not embryonic stem cells. I feel better now, even though there is a good chance she won't even see the message since I'm not sure I got her twitter address correct (does capitalization matter?).

To end on a positive note, check out the video of Baby Chewbacca I just posted in my summary of Fletcher's sixth stem cell treatment. Too funny!

We're Back

2009-05-30T09:56:00.003-05:00

We got back on Tuesday, but had to get a little creative with our travel arrangements. I have so many things to post, but am focusing right now on getting ready for Fletcher's little sister, who will be here in less than two weeks at the latest!

Once I have had some time to regroup I will resume posting, filling you in on the last treatment, some technical aspects of the stem cell infusions, and sharing some photos of all the fun we had along the way.

I can honestly say that I have no regrets about the trip and regardless of clinical improvements, I am glad we did it.

More to come...

Happy Birthday Trevor

2009-05-20T03:38:00.006-05:00

Another patient's father figured out a way for me to access the blog, but I can't post pictures or videos or fix the layout. So, I will try to put up some basic posts and jazz them up a bit when I get home.

In the meantime I would like to wish a very Happy Birthday to my husband! Johnny helped me order a cake and we celebrated this afternoon with the other families on the unit. A group of us are also planning to go out tonight to a local restaurant, which, from what I have heard, gives a whole new meaning to fresh seafood (Mike, it is the restaurant you ate at with Simon).

Check out that Cake... Tasted as Good as it Looked

Birthday Boy Cutting the Cake

As I mentioned above, that night a group of us went to dinner. An interpreter planned on going with us, but was detained at the last minute, so instead an intern who was helping out at the unit to practice his English came along, which proved to be a little more, um, interesting. I think we figured out pretty much what everything was we were eating, and if not, I don't want to know.

There may have been a large communal dinning room at this restaurant, but we didn't see it. Instead we were shown to one of many private rooms. There were no menus. Rather, we were led to a large room containing the food we were to eat... raw, uncooked, and in some cases, still alive. You write your order down on a sheet and give it to the chefs, who then prepare it and serve it family style.

Fish Tanks on the Left and Sample Plates on the Right

About as Fresh as You Can Get

Unless It is Still Swimming Like This Guy

Some of the Many Unidentified (and Untranslated) Objects

Each Table has a Huge Lazy Susan and Everyone Helps Themselves (by the way, that is snake in the bottom left... tastes like really boney chicken)

Enjoying New Food, New Experiences, and New Friends

Sixth Treatment

2009-05-18T15:26:00.004-05:00

Fletcher received his sixth stem cell treatment this morning, his fifth via spinal delivery. The doctors decided to go back to square one in terms of sedation and he received only di.azepam. They also took into consideration what I suggested about the anti-allergen, and since he had already received five treatments with no evidence of allergic reaction, they decided his was low-risk and proceeded without the de.xamet.hasone, but will be monitoring him extra carefully for any signs of an allergic reaction. Pre-treatment prep wasn’t too bad. He cried as they placed the IV, but quickly recovered. The administration of the di.azepam was via IV, so no enemas or IM shots and he was nice and loopy going into the treatment room. We’ve noticed that after the administration of the di.azepam he kind of makes noises like a drugged-up baby Chewbacca…

What do you think?

Trevor listened at the door during the procedure while I chose the effective method of hair-drying to once again distract me from what was going on next door. He was calm as he returned and has been pretty good ever since. Maria-Josephina and her family let us borrow a Baby Einstein dvd and Trevor and Fletcher are laying quietly in the crib watching it (I did mention the crib in the room is the size of a twin bed). Only one more treatment to go!

[Scene: Same small hospital room, a little more than five hours later.] Trevor is bending the rules just a touch and holding Fletcher (who is still parallel to the floor) on his lap while we count down the final few minutes of bed-rest. Fletcher initially took a nap for about two hours, but wasn’t too happy when he woke up. He ate, fussed, screamed, choked, spit-up, calmed—lather, rinse, repeat—for the couple of hours. He seemed to be in some pain, so we gave him some Tylenol and finally, after our modified bed-rest plan in daddy’s lap, he settled in for another hour nap while Trevor watches Chinese platform diving on mute. Oh yes, we lead a glamorous, jet-setting life, don’t we.

Technical Difficulties

2009-05-18T09:23:00.002-05:00

I am having a problem accessing Blogger from China. So I have asked my mom, the reluctant commenter and lover of weird trees, to post this message to let everyone know that unless Blogger access is restored in the next few days (and I am not holding my breath) I will be typing my posts in Word and publishing them once we return to the States at the end of the month. We hope to be home by May 27th, so look for a new post sometime around then. In the meantime, I am emailed your comments, so feel free to post some to cheer us on in the homestretch.

p.s. Fletcher is doing fine with his treatment today, so only one more to go!

Fifth Treatment

2009-05-15T03:36:00.002-05:00

A little after noon on Wednesday Fletcher received his fifth stem cell treatment, fourth by lumbar puncture. Did he tolerate it better than last Friday? In a nutshell, he has done better, and he has done worse, the latter by a long shot. This time it was pre-treatment that was probably the hardest part. Unlike the Ramones, this boy just doesn't want to be sedated.

They started the IV quickly, but Fletcher has figured out what happens after a couple nurses show up with the stainless steel tray and tourniquet in hand, so he started preemptively sobbing this time. And just when I got him calmed down from the IV stick, it was time to try to sedate him.

The first spinal they used di.azepam pre and post treatment, with minimal results, although he did fall asleep afterward, but I think it was just because he was already tired. Second spinal they used di.azepam pre treatment and chl.oral hy.drate post treatment. This resulted in a one hour nap. So, with seemingly at least a little success, they used the chl.oral hy.drate pre treatment for his third spinal, and that is when things got really bad, and they ended up doing a phe.nergen IM shot post treatment which translated into a two-hour nap, but that may have been because he was just plain exhausted by screaming at that point. So, following the natural progression, this time they tried the ph.energen IM shot pre treatment.

And surprise: it didn't work. After I calmed him down after the painful IM shot (once again, he shrieked like never, well once, before) I tried swaying and rocking him to sleep for about 30 minutes to no avail. When the doctor would come check on him he would cry, because, since he has yet to be completely sedated during the prior treatments, he knows what the doctor plans to do. I just about had him asleep and they suggested topping off his IV with a little di.azepam to tip the scales just a bit and send him over the edge into a nice slumber. I agreed and it was a mistake. He went from eyes drooping to wide open, but he was definitely loopy. He kept "oohing" at me a grining. So we decided that was the best we were going to do. The fact he is not asleep doesn't really affect the procedure because he doesn't move once they are holding him in place. And it doesn't actually hurt because they use local anesthesia. It is just better if the child is asleep, though, as you can imagine.

Personally, I think that the doctors are sabotaging their own sedation efforts, by giving the patients an injection of "anti-allergen" medication (de.xamet.hasone) in the IV before they try to sedate them. I know dex is a steroid, and my nephew always goes berserk after he gets steroid treatments for his asthma. So I did a little online research and found the following documented side-effects for dex: difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness. Hmm....

Fletcher cried a bit during the procedure, but was calm when they rolled him out of the treatment room. We went back to the room and read books, took a two-hour nap (me, too!), and then passed the rest of the time eating crackers and drinking rice milk (borrowed from our British neighbors since I had run out the day before). He got bored and upset a handful of times, but was relatively easily calmed (well, nearly anything would be relatively easier than Friday) and all in all it was an uneventful, but long, six hours.

We did a few laps around the unit after we got the okay to be vertical, and an hour later, were greeted by Trevor's return! I thought Fletcher would be happier to see him, as he would light up with a big grin every time I mentioned daddy's name, but he actually didn't seem to care one way or the other. I, on the other hand, could not wait to see him so I could hand Fletcher over and actually take a nice long shower without needing to rush into the next room at a moment's notice. Oh yeah, and because I missed him, that too. Of course.

Happy Mother's Day

2009-05-10T07:46:00.003-05:00

I was expecting Mother's Day to pass with little fanfare as Fletcher and I are solo here in China. So, imagine my surprise when Mike and Kristin walked into my room yesterday afternoon with these flowers and candy in hand. Sweet, huh. Mike asked Johnny, one of the translators here who really has gone over-and-above for us as well as the other patients and families, to help him navigate some local shops and they snuck out to find a florist Sunday afternoon and got some flowers for Kristin and me. They couldn't have come at a better time, either, because the 20th floor was smoky from a kitchen misstep and the lilies smell fabulous. So thanks again Mike, Kristin and Drew!

Unfortunately, this was the last kind act from this family (who have really been an incredible help with Fletcher over the past week) as they left this morning. I miss them already, sniff, sniff.

It has been a pretty laid back weekend here. Fletcher woke up not much happier from his phen.ergen nap and was a little feverish and just crabby and uncomfortable for the rest of the day. Thankfully he did sleep decently Friday night, despite napping on and off throughout the day, and woke up happy and temperature-free on Saturday morning. We had planned to go to West Lake and hang out with Drew's family on their last weekend here, but since Fletcher had run a temperature the day before, the doctor wanted us to stick around the hospital all day.

So we kept Kristin and Drew company as they packed and just chilled out. I think Fletcher may have started taking an interest in Drew's Little Einstein videos, which is actually pretty exciting for me as he has never really taken an interest in TV before. In fact, he is watching an episode right now as I type out this post.

This morning we said goodbye to Mike, Kristin and Drew, took a shower (Fletcher is slowly warming up to the idea, but you really have to ease him into it) and headed out for groceries. It was really hot (mid-90's) and I got a good workout schlepping Fletcher in his mei-tai plus two shopping bags back from RT Mart. I actually found some avocados, so I whipped up some guacamole for dinner and Fletcher couldn't eat it fast enough. I guess he has had his fill of eggs and rice.

We capped off the afternoon with a party for another patient from Sweden who turned two today. He had to celebrate without his twin brother and mom, but his dad knows how to throw a party so fun was had by all. I will post a picture in the next slideshow, but I want to make sure the parents are okay with their babies' pictures being posted to the Internet first.

All right, I guess Fletcher hasn't quite gotten hooked on TV yet, he is yelling for me so I better run! Next treatment is Wednesday, which is also the day Trevor gets back into town, so I will post the next update then.

I Had a Feeling It Wouldn't Last

2009-05-07T23:41:00.003-05:00

Resting peacefully, right? I guess you could say this is the calm after the storm, or possibly in between storms as it is too early to tell. Up until today's treatment Fletcher had done amazingly well with the transfusions (via IV and lumbar), almost stepford-wife-perfect. It was really quite odd. He previously had a little trouble staying settled for the full six hours after the procedure, but his actions during the transfusions had been calm, cool and collected. I knew it couldn't last, and it didn't.

Since the di.azepam they'd been giving him didn't really sedate him, they decided to do the rectal ch.loral hyd.rate pre-treatment. It made him drowsy, but in a fussy way, not the spacey way the di.azepam had made him feel. I heard him cry during the procedure, but I couldn't do anything about it and it just made me nervous so I went back to my room and tried to distract myself. He was okay when he came out, and happy enough when Kristin was entertaining him while I called Trevor go give him an update, but when they started doing his post-treatment vitals he just lost it and couldn't get it back together. He cried for a long time. I wasn't watching the clock and I am very bad at estimating times, but I am guessing it was a good 30 minutes of various degrees of uncontrollable sobbing.

I tried singing, and patting, counting and cooing, but nothing was working. The one thing that would probably console him is picking him up, but that is the one thing I could not do. I had to roll him onto his side because the saliva and snot production kicks into high gear when he screams for that long and if positioned on his back he would choke. I rang for a nurse and she brought the doctor who decided that an intramuscular injection of phen.ergan was the way to go. While they were gone to get the shot Fletcher vomited up a nice big pile of mucous due to his prolonged crying jag.

I don't think I have ever heard Fletcher scream like he did when they gave him the IM shot. I had to give myself plenty of IM shots during my IVF days and I can tell you that relaxing the target muscle is key. Fletcher cannot do this on his own, so I imagine the shot was pretty painful. He had his eyes closed during most of this fussing/crying episode, but when the nurse gave him the shot his eyes opened wide and he just looked at me with such an accusing stare. I wanted to cry myself, but I knew that would just make things worse, so I willed myself to be the strong, stoic, comforting mommy.

After a couple of minutes the shot kicked in and he is resting as pictured above. He has been asleep for about 75 minutes now, although he did wake up about 20 minutes ago, fussed for a minute, vomited up another mouthful of mucous and then promptly fell back to sleep as I lightly cupped his head and stroked his hair like I did when he was in the incubator in the NICU. I spoke with the doctor and we both agree that the vomiting is due to him swallowing too much saliva and mucous during his crying fit and nothing more sinister. It is already over two hours post-procedure and we have been given the green light for food and drink, so hopefully after a (cross-your-fingers) nice long nap I will be able to distract him the rest of the time with some graham crackers and rice milk.

To leave you on a happy note, I have included a slideshow of some random pics around the hospital over the last couple of days.

Electric Wave Therapy

2009-05-06T09:32:00.004-05:00

Miss Kim (do you love it that I am calling you that?) asked a question in her comment to the last post that I thought I would answer, thereby encouraging any questions and more comments to these posts, as I really enjoy reading comments and hearing from readers (hint, hint).

She asks what exactly is Electric Wave Therapy? Basically, and I say basically because I have a very basic knowledge of the concept, it is electrical muscle stimulation. It seems like a passive activation of muscles in Fletcher's upper arms and thighs. I did a quick search and found this explanation in a very reputable medical text (ha).

In any case, even if it has no benefit, it doesn't hurt Fletcher (Mike next door tested it out) and in fact Fletcher seems to enjoy it, or at the very least is indifferent. Each application (arms and legs) is 20 minutes and I usually hold him during the session and we read or play his video game, but sometimes I lay him down on the bed to mix it up a bit, as I did in this riveting video.

We Miss Daddy

2009-05-04T00:34:00.005-05:00

But we are hanging in there. Trevor has been gone just over three days and we have 12.5 to go (but who is counting). Luckily we have some pretty great neighbors here and Mike and Kristin have been looking after Fletcher when I need to grab a shower, cook some food, or the the like. We had a nice long weekend with no treatments, so we basically just relaxed and bummed around the hospital, took a few walks, caused a commotion at the KFC on the bottom floor of the RT Mart (we were seated in the front window and felt a little on display), and played a marathon-game of Mexican Train dominoes (Kristin and I tied for first place and beat out the "home team" Feledems... a double dose of beginners luck).

There is a new girl on the block, Ella, who is actually not so new as this is her third trip here and she is not yet two years old. She went with her mom and aunt to the aquarium on Saturday and Drew borrowed her gait trainer while they were gone, which he so nicely sublet to Fletch for a few minutes. No huge success as far as making it move (although he did take about five steps, collectively, which isn't bad for the first time) but it did make for a nice picture positioner.

Say Cheese

We bid a fond farewell to Sierra and her parents this morning and promptly thereafter began prep for Fletcher's third stem cell treatment. Usually these are done in the afternoon, but since Fletcher has what the Doc said was "special blood" meaning he is RhD negative (which is less common in Caucasian babies (about 35% are RhD negative) and really rare in Asian babies (less than 1% are RhD negative)), the stem cells he receives are processed a bit differently, and so sometimes he will have transfusions in the morning as well. Only one other child on the unit at this time is RhD negative.

Fletcher once again was surprisingly composed during the IV stick and even smiled at the nurses when they were done.

Administering the Happy Juice

Feeling No Pain

This Part Wasn't Any Easier

He came out maybe 15 minutes later, no worse for the wear. Fletcher's doctor (Dr. Mary) said that Fletcher didn't cry at all during the procedure, but was wide awake. We went back to our room and read a couple of books and listened to some music for about 70 minutes before the boredom hit and Fletcher wanted UP! I distracted him best I could, Mike came over and brought one of Drew's Little Einstein DVDs, Kristen came over and counted for him in Mandarin, and while both those were marginally effective for 10 minutes or so, they were obviously not the five-hour solution we needed. The dia.zepam we tried last time didn't work, so instead Dr. Mary suggested a little rectal chlo.ral hyd.rate. That, plus a little rice milk, did the trick and Fletcher is snoozing away while I type.

Hopefully he will sleep at least until 3pm (it is 2 right now, so we have a chance) at which time he gets to eat for the first time today. I will admit it here for all to read: I had a "bad mommy" moment this morning. Fletcher can't eat two hours prior to the infusion or four hours after and of course my alarm clock (a real beauty I got across the street at the RT Mart) didn't work (I concede that there may have been a component of operator error as it is not digital and I foolishly didn't do a test run). So we didn't wake up in time to eat prior to the procedure. But, to make it up to him, I ordered Fletcher his favorite local Chinese takeout (Homestyle Tofu, he thinks it is scrambled eggs). So I think he will forgive me.

Tuesday through Thursday we have our regular routine of PT, stander time, and electric wave therapy, and then Friday afternoon is his next stem cell treatment (another spinal application) after which we will be over half-way done!

The Morning After

2009-04-29T21:01:00.004-05:00

Wow, two posts in a 24-hour span. I am on a roll. Plus, Trevor is leaving tomorrow to go back to the States to fly a couple of trips to make some cash to offset a little of the crazy amounts of money we spent to come here, so I don't figure I will have much time up update while I am taking care of Fletcher solo during the sixteen days he will be gone.

Last night was fine. Fletcher fell asleep a little before midnight (not bad since he didn't wake up from his nap until 7:30pm) and slept straight until 8:30 am this morning. Trevor took him over to the therapy room for stander time, while I tried to catch a few more z's, but that didn't work out. Instead I decided to download some pictures (slideshow below). Come to find out that there was some kind of Beike representative touring the floor and she took a picture and did a mini-interview with Trevor and Fletcher, so we'll see if that ends up in a newsletter or something later on. Of course I asked Trevor if he at least took off the dirty bib Fletcher was wearing (we feed him in the stander at times to distract him) and you can guess the answer to that one.

We don't have any more stem cell infusions this week, so our schedule for the next couple of days consists of roughly an hour each of stander, PT, and electric wave therapy per day. Trevor leaves bright and early tomorrow morning (Friday) and we have Saturday and Sunday free. A lot of times groups will hire a driver and go to the zoo, or silk market, or other local attractions on free days, so I will have to check around and see if anythings brewing. I think they will give us our schedule for next week on Sunday, but I am guessing that he will have lumbar infusions on Monday and Friday.

Until then, enjoy this slideshow of the past week in stem-cell land...

The Hardest Part is the Waiting

2009-04-29T05:11:00.009-05:00

I will try to do a post sometime about the technicalities of the stem cell treatments, but in the meantime I thought I would do a quick update on how Fletcher is tolerating everything. In a word: spectacularly. I've always known my little guy was pretty special, but he has really been a dream throughout this trip, treatment-wise and otherwise.

Fletcher had his first umbilical cord blood stem cell treatment on Monday. They do the first treatment via IV, so in case something unforeseen happens (allergic reaction and the like) they can stop it quickly. Fletcher is no stranger to needles, and unsurprisingly, he doesn't like them, so I was a little nervous about the IV placement. He cried all of 30 seconds, if that. I have video proof (I considered posting it, actually). I have a feeling he will protest a little more next time as he will know what is coming.

The IV room is a little room right off the nurses station (which just happens to be directly across from our room) with two big cushy recliners. Two nurses worked to start his IV. I am cutting the and pasting the description of what happen next from Drew's blog, as his mom is a nurse and has the lingo down better. I'll even format it as a block quote so you don't think that I could actually come up with such a great description (thanks, Kristin!):

Once they place the IV, the 500ml bag of "Dextrose and Saline" is connected. Then they push what is referred to as "the anti-allergen". Due to my height advantage here, I found out last time that the anti-allergen is Decadron, a steroid. The small bag of stem cells is then infused into the line. Each treatment contains between 10-15 million stem cells. Once this is infused, the nerve growth factor is hung. Nerve growth factor is extracted from the umbilical cord serum and it's duties include to encourage growth/repair of neurons and it also enhances the potential of the umbilical stem cells that are infused. After this patient is allowed to return back to their room, while the final flush bag is infusing. This whole process usually takes around forty minutes.

Trevor was being goofy with the video camera (go figure) and got this action shot of the stem cells traveling down and into the IV. As usual Trevor's entertainment value is scoring points with the staff and other patients.

The IV infusion was just a warm-up for the main attraction, however, which is administration of the stem cells directly into the cerebral spinal fluid via lumbar puncture. Needless to say this part of the whole treatment gives me the most pause. The preferred method of administration is to push di.azepam through the IV to make the patients comfortable, administer local anesthesia to the injection site, and do the procedure up on the 20th floor. However, for patients who can't stay still or get too agitated, a trip to the OR and a date with some fen.tanyl is in order. This is not as ideal because the OR is down on the 3rd floor and a little more "real China" then our oasis up here on the 20th floor stem cell unit. Plus general anesthesia and all that goes along with that.

They asked me if I thought Fletcher would cooperate and, frankly, I had no idea. That kid is a mystery. Like I mentioned before, he cried less than 30 seconds when they started his IV, yet pitched a colossal fit when the nurses said "bye-bye." So the plan was to try the preferred method at 1:45 this afternoon, and if he put up too much of a fight, they had a back-up reservation of the OR an hour later. His IV from Monday was still good, so we didn't need to place another. They administered the di.azepam in our room, and then wheeled him out in his crib across the hall to the Stem Cell Transplantation Room, where Trevor and I had to wait at the door. That part was hard...

But it was not the hardest part. Luckily all went well with the procedure. We heard a couple small crying fits which we believe was Fletcher (his cry seemed a little lower-pitched either due to the fact he was behind closed doors or maybe because he was drugged up) but the doctors were able to hold him still and complete the procedure without the need for general anesthesia. He was gone maybe 30 minutes total. Which means (praise God) the hardest part was waiting the six hours after the procedure before we could pick Fletcher up in order to avoid a spinal headache. All things considered, that seems not that difficult. And, relative to what could have happened, it wasn't. But, if you know Fletcher, you know that laying still, head flat with no pillow, on his back, in a bed, WITHOUT BEING HELD, for six hours is not exactly in line with his demeanor. Long story short, he lasted about 50 minutes before we had to give him a little more di.azapam to take the edge off. And even then Trevor had to break the rules a little and hold him (very horizontally) for about 2 minutes to get him to sleep. Luckily he slept for a bit over three hours, so that helped immensely. The rest of the time we spent doing things like this:

And when he woke up, boy was he hungry (he couldn't eat 6 hours prior and 4 hours after the procedure, but because of the timing of his nap it was almost 12 hours from when he last ate). So Trevor is feeding him a bucket of rice while I type out this post and I have a feeling that we are in for a late night.

Happy Birthday Alexa!

2009-04-25T10:04:00.007-05:00

We want to wish a very happy seventh birthday to Cousin Alexa! She is the best cousin, friend, teacher, therapist, and cheerleader that a little boy can have.

Holding Fletcher for the First Time in March 2007

Almost Exactly One Year Later in March 2008

Alexa Today

(except now she is minus her two front teeth)

We love you Alexa and are sad to miss your birthday, but we are wishing you a very happy birthday all the way from China!

Playdate: CP-Style

2009-04-25T01:32:00.004-05:00

Fletcher and Drew (and Trevor and Kristin) playing on Fletcher's much-beloved Starfall website (he loves the ABC games/songs and it really helps him practice imitating letter sounds). When I find some editing time I will post of video of them sharing a Big Mac switch to activate another one of Fletcher's computer games a few moments earlier. How cool is that!

Blood Has Been Shed

2009-04-24T22:05:00.009-05:00

We checked into the Zhejiang Xiaoshan Hospital without any problems on Thursday. We received the royal treatment not only from our driver and the hospital staff, but also from Mike, another patients dad, who was waiting with some of the staff to greet us at the door and to help with our luggage. It was Mike, Drew, and mom, Kristin's, second time to Hangzhou for stem cell treatments. In fact, the blog account of their first visit was my first real look into the patient experience and a large part of the reason we felt comfortable seeking treatment here. I commented on their blog and have been corresponding by email, and phone, for the last couple of months.

We feel very fortunate that our first and their second visits have overlapped. Not only are they showing us the ropes, but they are also really fun people, and the similarities between Drew and Fletcher are many (including being born at the exact same gestation at identical weights, down to the gram!). You can check out their current blog (which unfortunately doesn't include entries from their original trip) here. Speaking of blogs, we also met another nice family from Texas who is here with their precious curly-haired angel Sierra. You can find Jason and Rosetta's blog here if you want to "meet" them and get their take on the whole process.

We spent the first day settling in our room and getting set up. Mike, Kristin and Drew took us over to the RT Mart (like a Super-Target plus) a few blocks down from the hospital and we bought some food, drinks, toiletries, etc. It is a very interesting place, with tons of exotic food and precise procedures on how to buy some of that food (the bakery and produce sections in particular). We have a dorm-room fridge in our room and then there are two common kitchens on the floor (well, one common kitchen and one closet-sized room, to be more precise) with assigned cabinets for each room and small electronics (toaster oven, hot plates, etc) with which to cook the food. Otherwise the staff will come by your room with menus and certain times of the day and you place your order with them for take-out. I will try to take and post a few pictures of our "home away from home" in a subsequent post, but all in all they are decent accommodations.

The afternoon of our first day Fletcher had a PT evaluation with his therapist, Anna. It went well. It is always interesting to see a new person get their hands on Fletcher. He always looks so much worse than when we handle him. I guess it is because Trevor and I know all the positions where he can have the most motor success and tend to hold him in those positions. He tolerated the evaluation well (thanks to my Zen mp3 player). We had free time for the rest of the night, but could not give Fletcher any food or drink after midnight because they were going to draw blood in the morning. I was a little nervous because Fletcher hasn't quite adjusted to the 13-hour time change and has been waking in the night, at which time it is easiest to comfort him with a bottle. Luckily he slept through the night (well, until 5:30, but that counts) and the nurse came in to draw some blood soon thereafter. He protested some, but recovered quickly.

The nurse did the draw in our room on our bed and things got just a touch messy, thus the title to this post.

Chinese Hospital Bracelet

Trevor and Fletcher are napping right now, and then Fletcher has PT at 2:30 followed by electric wave therapy for 45 minutes, which will conclude today's schedule. Tomorrow (Sunday) is a free day and then Fletcher has his first stem cell infusion (via IV) on Monday. Please keep him in your thoughts and prayers at that time (or dreams, maybe, as it will be around 2am Monday in the States).

And finally, since it worked so well the last time around, I am embedding another annotated slide show of our last day at West Lake and the first couple of days at the hospital.

West Lake

2009-04-22T05:52:00.007-05:00

We arrived safely in Shanghai and were picked up by a driver recommended by the hospital for the three-hour drive to Hangzhou. In order to allow for any missed flights, we planned to start trying for flights on April 19th, and since we made the first one we arrived April 20th but are not due to check in to the hospital until April 23rd. So we arranged to stay a few nights in the area of West Lake in order to get over our jet lag and do a little sightseeing.

It has been a long few days with spotty sleep at best, so in lieu of writing a post, I thought I would just link to some pictures of the last two days. I have provided captions to give you an idea of what you are looking at. Despite our lack of sleep, we have been enjoying West Lake. Take a look!

China or Bust

2009-04-21T22:19:00.002-05:00

Most of you know, or have figured out from the comments to my previous posts, that the overseas trip to which I have been alluding is to China. I am typing this out on the plane en route and hope to be able to post it from our hotel room.

I have just finished my dinner of grilled New York sirloin steak with pepper rub, red wine and vegetable sauce, roasted portabella mushrooms, potatoes au gratin and grilled green and white asparagus, which I finished off with an assortment of petite pastries (after passing on the fruit and cheese cart… how am I to have room from my Skysnacks ™, mid-flight refreshment of Taiwanese-style noodle soup with prawn paired with raspberry brulee cake, or my pre-arrival light meal of seasonal fruit , pastries, and choice of swiss cheese omelet or congee?). Let me tell you, first class is the only way to go on a 14-plus hour flight.

Unfortunately, in order to fly first-class sacrifices had to be made. But not by me. Continental does not allow children to fly in first class as passriders (that is, non-revenue airline employee passengers), so Trevor and Fletcher are in coach while I get to kick my complimentary-sock-adorned feet up at the front of the plane. In my defense, I offered to stay in coach with Fletcher and give Trevor the first-class seat, but he insisted I take it, and who am I to protest?

Our travels did not get off to a great start as we were bumped from our scheduled flight yesterday from KC to Newark in favor of a Continental pilot trying to get home from Hawaii (you have to get creative with your itinerary when you passride because it is all standby). However everything worked out in the end because we got to spend an extra night at home instead of a night at the Newark Airport Hampton Inn and still made the same flight from Newark to Shanghai that we originally planned to take.

So, enough about the journey, you want to hear about the destination, right?

After over a year of research, calling around, hand-wringing, deliberation, and prayer, Trevor and I decided to purse donor umbilical cord blood stem cell infusions with Fletcher. There is a domestic program at Duke where children with CP can have infusions from their own cord blood if banked at birth, but we did not bank Fletcher’s (we were too concerned with keeping both he and I alive to even think about banking the cord blood, but even if we had, with my high blood pressure and clotted placenta, they probably would not have been able to use the blood anyway… at least that is how I make myself feel better about it). Fletcher is on a waiting list at Duke when the time comes that they expand the clinical trial to include infusions from sibling cord blood, which is why we aren’t hesitating to bank Smykeeny Baby’s cord blood. But the nurse I spoke with at Duke didn’t think the program will be expanded for another couple of years at the earliest, and even then, they may want to give Fletcher immunosuppressant drugs before the infusion which is not without its own inherent risks.

And, while I do believe that seeking treatment in China today is somewhat premature, and that so much more will be discovered about stem cells in the next five to ten years, given Fletcher’s age and the nature of neuroplasticity, I feel like now is the time to try this therapy with him. We have chosen to travel to China because the treatment offered by Beike Biotech seems like the most comprehensive, and safe, program available. I will be writing more details about it in the ensuing month, but I can tell you now that we are hopeful, yet realistic, about the improvements Fletcher stands to gain through this treatment. So, check back frequently for updates as the hospital’s internet allows. In the meantime, if, in addition to the Beike hyperlink above, you would like to read more, including blogs from current and former patients, check out www.stemcellschina.com.

First Flip

2009-04-15T17:01:00.005-05:00

No, Fletcher has not learned to do somersaults. The title refers to our new little gadget. We are not a gadget family, necessarily, but my sister recently got a flip video recorder and has been carrying it around and actually using it (vs. just storing it under three inches of dust in the cabinet, which is what I do with my current camcorder), so naturally I had to get one myself (by the way, after I bought ours online I spotted the minoHD with tripod on sale at Costco). It is not that our "old" camcorder is a relic or anything (got it when Fletcher was just moving from isolette to crib in the NICU, so it is barely over two years old). In fact, it is a hard-drive recorder, so I don't even have to mess with tapes. Problem is, we can't find the editing software, and the Flip just makes it SOO easy!

I just unwrapped it mere minutes ago, found Fletcher playing in his playroom and pushed a button. Then I plugged it into the computer and pushed a couple more buttons and here it is. Not the most exciting footage (although personally I am impressed at how well Fletcher is starting to follow directions when I ask him to bring his hands up) but I thought I would share our "first flip." Enjoy!

Happy Easter

2009-04-12T19:44:00.006-05:00

I am happy to report that Fletcher had a fun-filled Easter holiday. I am feeling more confident in his immune system, so it was a full-contact holiday complete with trips to the mall, a children's service at church, and lots of cousin time.

Easter Bunny visit with cousins Trey, Maren and Michael

(Alexa misses all the fun, darn school)

I caught a Fletcher rabbit

Easter Morning

You can't really tell from this picture, but the box to the left in Fletcher's Easter basket is a chocolate cross instead of a chocolate bunny. He is still too young to appreciate the meaning behind holidays, but this is my first attempt to bring the focus back to what is important about Easter. I know, using a Hershey's chocolate cross in a basket is somewhat of a lame attempt, but it is a start. Maybe one day I can be as bold with my faith as a few of my favorite bloggers, which, if you are interested, you can find here, here, and here.

Too Much to Write

2009-04-11T23:34:00.005-05:00

I have gotten so backed up on blog posts, and we have so much going on, that I don't even know where to start. So I have decided I am not going to start, at least not tonight. Just wanted to check in and let you know that we are still here, and everyone is healthy and happy.

The madness around here stems from two major issues. First, Trevor has been working extra shifts to make up for my lack of income, and secondly, I am on a major therapy binge. For the last year I have been compiling a list of therapies requiring travel or other significant time dedication that I wanted to sample before the baby arrives. A couple of months ago I realized that June is quickly approaching... thus the binge. In the past month Trevor and I have traveled to Philadelphia and St. Louis and later this month we are even heading out of the country. We've attended seminars, seen new doctors and therapists with special training, adjusted Fletcher's diet (well, it's a work in progress), and have basically (finally!) embraced the role of ultimate specialist trained in Fletcher Smykay.

I make no promises, but hopefully I will make some time in the coming weeks to post a little about all of that, and more. In the meantime I will leave you with Fletcher's mugshot, a.k.a. the home-made passport photo I took for Fletcher's Visa application for said out-of-country trip.

Wordless Wednesday: Late March Snow

2009-04-01T19:41:00.001-05:00

Cerebral Palsy Awareness Day

2009-03-20T21:47:00.006-05:00

In honor of Cerebral Palsy Awareness Day, there is a sweepstakes going on over at "Life of Logan." Check it out, follow the rules and enter to win a couple of pretty cool prizes, including one from my friend Melanie.

A few quick facts about Cerebral Palsy:

- The average prevalence of cerebral palsy is about 1 in 278 children. This first report of the prevalence and characteristics of CP, the most common cause of motor disability in childhood, are from Georgia, Alabama and Wisconsin. Can you even begin to imagine the numbers if there was a national surveillance?

- Cerebral palsy is one of the most common developmental disabilities in the US, affecting at least 800,000 children, adolescents and adults in America. Cerebral palsy is NOT a disease nor should it be considered one. It is not even a simple or single disorder but rather a broad range of disorders that disrupt a person’s ability to move, sit, stand, walk, talk and use their hands. The severity of the movement disorder and the type of movement difficulties can vary greatly. Some patients have only mild difficulties with balance, walking and fine motor skills while patients at the other extreme are completely trapped in their own bodies, fighting rigid limbs, and unable to speak or swallow.

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

Resources: Centers for Disease Control (CDC) and Reaching for the Stars (RFTS)

Copying Coping

2009-03-09T00:18:00.005-05:00

I've mentioned in past posts that through ABR I have met some really great moms to other kids with CP, right? And in particular, I have had the good fortune to spend some time with one such mom named Katy, who goes by the name Bird on her blog, yes? Well, as I have done in the past, I am totally freeloading off one of Katy's recent posts on coping when you find out your child is going to be disabled.

Normally, I may feel a little bad about totally mooching off her post idea (not that the rest of my posts are so spectacularly original or anything), but, you know, it's late, I'm tired, I am long overdue to post, it is a great topic, and Katy herself was inspired to write it after reading a post from Melanie (another awesome mom I've met through ABR).

Katy writes the following about her son Charlie:

These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know.

This is exactly how I feel about Fletcher, at least the vast majority of the time. Thanks, Katy, for giving me the words and also the incentive to post them (amazing how I find cut-and-paste posting is so much less intimidating than, I don't know, completely original thought).

I also can relate to the part in Katy's post where she wonders if her past experiences were a way of God preparing her to be a mom to a child with special needs. I have no doubt that is what happened to me. Unlike Katy, I didn't have any prior experience with kids with special needs, volunteering, or really even praying regularly for that matter (all three of those have increased tenfold as a result of Fletcher, though). Instead, I think I was prepared by enduring isolating circumstances.

One of the toughest things I think moms of children with special needs face is a sense of isolation. Not many people can relate to what you are going through, and, afraid they will say the wrong thing, people don't really talk about it (and I don't blame them, I was one of them, once). My version of parenthood is so diametrically opposed to the "typical" parent experience that it becomes hard to relate to other moms at times. This is nothing new for me, however.

Nothing about Fletcher, from his conception, to his birth, to his homecoming, etc, etc has been typical. It took us two years and four IVF cycles just to conceive Fletcher (and even the cause of our infertility and the cycles themselves were atypical... we were outliers of the misfits!). Then I develop a condition that only half of one percent of pregnant women get. Then Fletcher is born so soon... and you know the rest. I don't recount this here to garner sympathy, rather I am trying illustrate the point that I have gotten plenty of experience of being "not normal" when it comes to children, and I really feel like it has prepared me to have a child that isn't like the others. Just another way perspective changes everything.

Second Anniversary

2009-03-01T20:43:00.007-06:00

Today is the second anniversary of the day we got to bring our precious baby boy home from the NICU, exactly three months after his birth and two weeks before his due date.

Many people talk about how the most nerve-wracking car ride of their life is the one bringing their newborn home from the hospital. I say try bringing home a 4 pound three-month-old who can barely fit in the car seat and is on supplemental oxygen and an apnea monitor!

And lest you feel like I am exaggerating about barely fitting in the car seat, here is a picture from what us NICU grads know as the "car seat test." Notice how the chest buckle is right up against the crotch-latch. The baby has to sit in the seat and not set off an alarm (apnea or bradycardia) for the greater of an hour or the length of your commute home. Our nurse commented on how serious Fletcher looked during this trial. I had to remind him that us Smykays take our tests seriously (which is even funnier if you know my husband).

Today is also a big day for Smykeeney Baby. A link to her blog is in the right-hand margin, so go check it out!

Wordless Wednesday: Grandpa

2009-02-25T17:05:00.000-06:00

ABR: First Satellite

2009-02-16T14:15:00.005-06:00

We headed down to Plano, Texas this weekend for our first "satellite session" for ABR. The main ABR center we attend is in Montreal, but for ease of travel, those in the program only have to go to Canada for one out of the first four training sessions that are mandatory in the first year of the program. The other three training sessions (which do not include evaluations by Leonid Blyum) may be done at various satellite locations available across the US. We chose to go to the Plano location because Trevor's Dad, Aunt and Uncle live in the neighboring city of Double Oak.

We planned to fly down to DFW and rent a car for our stay, but because of passenger loads and timing (since Trevor is a pilot, we get to fly for cheap... but it is only standby, so we risk getting bumped) we ended up driving instead. Luckily Plano and Double Oak are both on the north side of Dallas, and my hubby has a lead foot, so the drive is under seven hours. We timed it so Fletcher took his nap during the drive (3.5 each way... he certainly loves to sleep in the car!), so everything actually worked out great.

I have to say, I couldn't be happier about the training. Due to a couple of last-minute cancellations, there were only four families attending this particular session, and with two session a day that meant only two families per session, which means lots and lots of undivided attention with the trainer, who just happened to be Gavin, the man who did the initial evaluation of Fletcher in Montreal. I have a huge thirst for knowledge, so you better believe I took advantage of that time and really feel like I have a good understanding of how ABR will help Fletcher. That said, I am not going to type it all out here, but for the most part my posts from Canada in October explain the concept.

Speaking of concept, since we learned about that and the technique in the fall, the main purpose of this satellite was to practice the technique, get answers for any questions or problems we are having implementing the program at home, and to learn a few new exercises. Fletcher's new exercises involve the posterior neck, lateral chest, shoulder edge, and top of the head. Gavin also made us foam pillows to use for each exercise in place of the towels. Apparently, once you get used to the technique the foam pillows are a more effective tool, but towels are more forgiving, so they are used for the initial training.

We also got some exercises for the ABR machine. According to the ABR Canada website:

The main purpose of ABR machine is to enhance the number of ABR hours the families are able to perform. Typically the maximum number of ABR hours the families are able to do manually is about 20 – 25 hours a week with the average performance being around 15 hours weekly. That number of hours is most often good enough to demonstrate the efficiency of ABR Method and to bring consistent developmental progress for a CP child. However, in order to speed up the rehabilitation process, ABR machine brings the possibility to find extra reserves for working ABR hours.

The use of the ABR machine permits to increase substantially the number of hours clocked in. The machine is able to act as the second and the third provider and to extend effective ABR hours by using the reserves of the child’s daily livings – delivering ABR impacts in parallel with other routines (feeding; TV watching, sleep etc.)

Using the Machine to Apply ABR Technique while Feeding a Bottle

I am excited about the increased hours we will be able to achieve using the machine. While I know the manual exercises are the most efficient, and are the only means of applying the technique to areas of the neck and head, I also know, because of the baby on the way, that reaching our target hours for ABR will be difficult this summer (we didn't even meet our target this winter, without a new baby around). We will still aim for our goal of three manual hours per day, but having the machine will definitely give us peace of mind that Fletcher will still benefit from ABR when we are just too busy to get in the manual hours.

One of the other families we spent some time with this session was Charlie, his mom Katy, and her sister-in-law. Katy did a better job of updating in real time about our session, so go check it out over at Bird's Blog. And I will reiterate a comment I made on her blog here. While traveling for therapy is obviously first and foremost about the therapy, the experience of meeting like-minded parents is a motivating factor in and of itself. As Barbara mentioned in her comment to the same post, the natural environment (or in-home) focus of many early intervention programs, while good in many respects, unfortunately can isolate parents from the natural support groups that pop up in center-based programs. As much as Fletcher is and will benefit from ABR, I feel like as a mom I am equally benefited through meeting great moms in similar situations such as Katy and the others I had met in Montreal.

National Dental Health Month

2009-02-16T12:28:00.007-06:00

Did you know that February is National Dental Health Month? Neither did I until my weekly specials link to a major online child-product retailer filled me in. So I quickly made an appointment for Fletcher's first trip to see the dentist. I mean, not seeing the dentist in February, during National Dental Health Month, would be un-American, right?

Actually, I have wanted to take Fletcher to the dentist for months now (in general, but also because of a brown spot on one of his incisors), but we failed to add him to our dental insurance last January, and based on articles like this one which indicate that prematurity can lead to a number of dental problems, I was afraid once we went in for an appointment we would leave with thousands of dollars of dental work to do. So, in my warped reality, it is better not to know what bad shape your kids teeth are in until you can pay for the work to be done, rather than get the diagnosis and then have to wait for the insurance coverage.

So, Fletcher's dental insurance coverage kicked in on January 1st, and we made an appointment early this month with a pediatric dentist. After all, I want a dentist familiar with working with kids, and the one we scheduled also has experience with kids with special needs.

The morning did not start off well. Trevor had planned to be home in the morning and was leaving to catch a flight at noon. Unfortunately, due to weather and loads and other pilot-type stuff, he had to catch the 9 am flight, which meant that I was flying solo. Not a huge deal, I am used to Trevor being gone, only I forgot to bring the stroller and it is not fun trying to deal with new-patient paperwork one-handed. Also, because I didn't have the extra pair of hands, their are no cute "first-time-at-the-dentist" photos.

The string of bad luck continued as I sat in the waiting room and the receptionist informed me that I have a dental HMO and can only see my primary dentist. I had been so focused on choosing the right health insurance plan for our family, that I completely ignored the dental options and chose the cheapest. I didn't even know that there were dental HMOs. So, now the dentist I had been waiting nearly a year to see wasn't even covered by our insurance. Ugh. Luckily, a routine appointment was only $40, so I decided to just go through with it and brace for the worst, and if the worst came to be and Fletcher needed thousands of dollars of dental work, we could change plans in June (when the baby is born, which would be an adequate "life event" to warrant a change in coverage).

We are called back and the dentist has me sit on a stool with Fletcher sitting on my lap facing toward me, with his legs on either side of my hips. Then the dentist sat on a stool facing us and I just lowered Fletcher down so his head was in the dentists lap. This worked like a charm and Fletcher tolerated a good five minutes of probing and scratching. This guy really was a pro (if you live in KC and want a good pediatric dentist recommendation, let me know). He took the little hook tool and scratched the little spot on Fletcher's incisor and I was in shock as the stain lifted and his tooth was completely white (I have scrubbed and scratched on that spot countless times with no luck). He explained to me that what I was sure was a cavity or at least missing enamel was actually rough enamel that just holds on to particles and becomes discolored.

Then he told me to increase brushing his teeth from once to two times a day and that he'd see me in six months. What? I was sure that he had missing enamel or worse, and this dentist is just telling me to be extra diligent in brushing... wow! So, that is it. The rough enamel does have a higher propensity to hold food, and therefore decay, but otherwise we had an uneventful appointment. I was shocked. You maybe be thinking, what's the big deal, he went to the dentist and his teeth are okay. But, unless you are a mom to a special needs kids, you do not understand how exciting it is to go to an appointment (albeit dental vs. medical) and have the professional tell you your kid (or in this case, your kid's teeth) is typical. That you don't have another appointment, or procedure, or condition to worry about. Seriously, it is the best feeling!

Happy Valentine's Day

2009-02-14T13:53:00.001-06:00

Mommy's Valentine

Daddy's Valentine

Happy 30th Birthday Uncle Jay

2009-01-22T22:16:00.002-06:00

Trevor and I both have little brothers celebrating their 30th birthdays this month. Since Fletcher did not help his Uncle Jay blow out his candles like he did with Uncle Chad a few weeks ago, I decided to post my favorite picture of the two of them, which I just happened to take on Fletcher's first day home from the NICU. So, see Mom, you can blame Jay for starting Fletcher's bad habit of taking his naps while being held.

Puzzles

2009-01-19T13:00:00.002-06:00

A couple of days ago I was steam cleaning the carpets and washing the windows in my family room, which adjoins to Fletcher's playroom (okay, so I was really reading blogs and eating the dinner my husband had prepared for us) when I overheard Trevor and Fletcher doing one of Fletcher's favorite activities... playing with puzzles. So I grabbed my camera and started trying to take a couple pictures on the sly.

I purposefully tried to stay unnoticed as recently a couple of people have commented on what a ham Fletcher is for the camera and I personally thought it was just because usually I am making a fool of myself and acting really goofy behind the lens so he would focus and smile. As you will see from the third picture below, my theory was proven wrong.

Laughing with Daddy after Knocking Out the Square Shape

This is Fletcher's Favorite Puzzle

(it is a Melissa & Doug puzzle I found either at Target or US Toy--the simple shapes with bright colors helps him focus and not be visually overwhelmed while the big knobs are easier to grab or knock off)

Guess Who Just Noticed the Camera

Fletcher has a unique way of playing with his puzzles. In fact, if you didn't know him better you may think that he is randomly batting at the board and just coincidently knocking the pieces out. Due to either his possible CVI or the persitence of his ANTR (or, according to ABR principles, the misalignment of his shoulder blade and clavical) he will look at the board, and then many times look away in order to raise his arm to the proper position to get to the puzzle piece. But if you take the time and really observe him closely, it is fairly clear that he is intentionally targeting and pulling out or batting out the pieces one by one. This is more obvious as his motor skills improve and he is more often grabbing than batting. And he gets so excited doing it. It really is cute. Man, I need to take the time to figure out how to post a video.

Christmas in July

2009-01-17T15:49:00.007-06:00

Well, not exactly. We traveled to see some of Trevor's family last week for a belated Christmas visit, but although it was January, they live in San Antonio, so it felt a little like July (at least compared to the freezing temperatures we have been enduring around here for the last month). In fact, we celebrated Trevor's brother's birthday with dinner outside on a restaurant's patio. In January. Other than my dear friends, the winter weather (or lack thereof) tops my list of what I miss about living in Texas. Of course summer is another story.

We had a great time in San Antonio, hanging out at our old haunts and visiting a few new places, too. But most of all, it was nice to just spend time with Trevor's mom, sister and brother and his family. Oh yeah, and eating REAL tex-mex food. Yum.

Fletcher with Grandma Cyndi on "Christmas" Morning

Modeling Matching PJ Pants made by Grandma Cyndi

There is a story behind this picture. Because Fletcher's gross motor skills are hit or miss, I tend to be lax at baby proofing the surrounding area, so to speak. One afternoon we went to lunch at this dive close to my old college campus, and five minutes after sitting down, Fletcher grabs hold of my iced tea and pulls it all over our laps. Of course this was one of the few times I didn't pack a back-up outfit, so we had to throw together this stylish ensemble consisting of a hoodie I stashed in the car for later and a skirt made of his burp cloth (which, by the way, is a super-cute handmade burpcloth made as a set with a receiving blanket by my skilled seamstress friend Sara and given to me at my baby shower, and yes, I am slathering on the praise so she will make me another set for the new baby). Also note the half-chewed bite of beans and cheese in Fletcher's mouth... the kid can't get enough Mexican food, just like his mom and dad.

Daddy, Grandma Cyndi, Fletcher and Aunt Anika after Feasting on BBQ at the Salt Lick in Dripping Springs

Trying out the New Wetsuit

Uncle Chad hooked us up with day passes to the indoor pool at his gym... it wasn't THAT warm outside

Hitting the Dance Floor with Uncle Chad after his Birthday Dinner

Introducing Smykeeney Baby

2009-01-16T00:24:00.006-06:00

I have a secret. I know, I already posted about expecting a new addition to the family this summer, but what I didn't mention is that Angie and I have been keeping a blog about the whole process. Originally, the blog was open only to those whom I invited, but since we have been bad about updating it (even worse than I am about updating this blog, if possible) I thought I would make it public and link it to this one, so visitors to the Smykeeney blog or this blog could just check the side bar to see if there have been any new updates on the other. Plus, despite a little news to the contrary we received at her OB appointment earlier today, I am hoping the rest of Angie's pregnancy will be so boring and routine that there will be no further developments unusual enough to blog about.

So, for the latest news on the baby, or if you were ever curious about the ins and outs of a gestational carrier cycle, or even just an IVF cycle for that matter, go on over and check it out. I will warn you, though, that it is a little technical and pretty detailed, because more than anything, I want it to be a record for my own personal reflection, but I thought some of you may like to come along for the ride.

Wordless Wednesday: Go Spurs Go

2009-01-14T21:21:00.003-06:00

Happy 30th Birthday Uncle Chad

2009-01-11T21:10:00.001-06:00

Spoke Too Soon

2009-01-05T23:49:00.003-06:00

Of course. Fletcher had a bad night last night and vomited 3 times today. All over everything. As long as Trevor and I don't make a big deal about the puke, he doesn't even seem phased by it, though. And apparently my dog thinks baby vomit is a delicacy. I try to keep her away from it, but sometimes between trying to clean up Fletcher, myself, and the couch/chair/floor I am too busy to really care that Zoey is feasting away on--how should I put it--sloppy seconds... is that wrong?

Sick of 2009

2009-01-04T23:47:00.011-06:00

Well, not so much sick of 2009, as sick in 2009. Yes, I have spent the first week of the New Year under the weather. Thankfully Fletcher, while being a little more "touchy," has done a decent job of avoiding catching my stomach bug (well, now that I think about it, he hasn't escaped completely, as he has vomited up two of his last three dinners, but it really hasn't seemed to have bothered him too much). Funny how I completely forgot that fact until now... but before you judge me a negligent mom, you've got to realize that Fletcher has chronic reflux, so spit-up doesn't even reach my radar.

Thus, while I would really like to do a great post about 2009 and all of the promise and excitement it is sure to bring our family, I simply do not have the energy. So, instead, I have been inspired by some other blogs to share some cute out-takes from our Christmas card photo shoot (and that way I don't have to be creative and come up with things like complete sentences).

Excited to Start the Shoot

Never Turn Your Back on a Cat

(much less three wearing mittens)

The Talent Starts to Protest

Fletcher's "New" Pony Walker

(here's a New Year's Resolution... learn to move this thing!)

Aww, Such a Sweet Face

Christmas Morning

2008-12-25T13:58:00.009-06:00

Fletcher gave Trevor and I an awesome Christmas present by sleeping in until nearly 10 am. We went to Candlelight Service at 9 pm, so we didn't get home until late and I was up until 3 am taking care of some last minute details, so I was particularly happy with this gift. Fletcher is still a little too young to get excited by presents, so we spent a leisurely morning having breakfast and then checking out the goodies from Santa. Since Fletcher still plays with toys he got last year, and because we usually give Fletcher what he needs when we find it (remember, with kids with special needs like Fletcher, toys are typically developmental and are considered part of therapy, so if I come across something that he can play with or would like, I don't pack it away to open in December), we have begun a new family tradition and ask that Santa only bring us four gifts a piece: something we want, something we need, something to wear and something to read.

For his want Fletcher got a flat-screen computer monitor to use with our old desktop computer in order to play his favorite online games; his need was a telescoping bracket to mount the monitor on the wall in his playroom so it can be raised or lowered depending on his positioning (in his corner chair vs. stander); he got a new outfit to wear to our family holiday party this weekend; and finally a book of Christmas songs to read that also has buttons to push for the musical accompaniment, to keep mom and dad on tune.

The boys posing by the tree, Fletcher in his Christmas Eve pajamas his Grandma Adams sews every year for each of her grandkids.

Fletcher with a death-grip on daddy's present.

Merry Christmas!

2008-12-25T00:01:00.002-06:00

Holiday Traditions

2008-12-23T11:18:00.007-06:00

Even though his birthday is December 1st, I really consider this Fletcher's second "real" Christmas since he spent his first in the hospital, on a ventilator and drugged with morphine so he wouldn't fight the vent. Last Christmas I was terrified that RSV would land Fletcher right back on the vent, so we more or less hibernated at home.

This year I am feeling a little more confident about Fletcher's respiratory health, so I have decided to begin our Christmas traditions, including a drive through Christmas in the Park, our local Park and Rec's holiday light show, and a trip to see Santa (this year we went with cousins Trey and Michael, so of course we saw Santa at their favorite place-- Bass Pro Shop).

Fletcher Enjoying the Lights

Santa at Christmas in the Park

The Real Santa

(they kept using this horn to try to get the kids to look at the camera, of course this triggered Fletcher's startle reflex)

I convinced them to stop using the horn.

And finally, another action shot from sledding, since the one I posted apparently didn't have enough action for some people. (ha)

And to answer Catherine's question in the comments from the last post: When you sled down your driveway you really can't totally stop yourself from going into the street. We just had to make sure there was no traffic (I played photographer and look out). I would post a video I took of the trip, but I was out of batteries so I had to keep the camcorder plugged in, so all I got was a shot of Trevor's back. But in the video you can hear me telling him that I am against the driveway/street plan all together. But in the end it worked out. They went down the driveway, across the street, over the curb and down the small hill in the park across the street.

Sledding

2008-12-16T18:22:00.009-06:00

It snowed a few inches last night, and since Trevor is a born-and-bred south Texan, even after a few years of living in the Midwest the first snow of the season is still somewhat of a novelty to him, particularly because Fletcher is now old enough to possibly enjoy playing in it. So, as soon as the weatherman started forecasting snow, Trevor asked me to stop by Target and pick up a sled.

And, today around noon, they got to test it out...

Excited Anticipation

Action Shot

Second Time Down

Do you think Fletch is giving me a dirty look for letting him loose with his maniac dad or for dressing him in that goofy dog hat?

Heading Back In

Close Up of My Adventurous Frozen Boys

For those who have been to my house, you may have recognized the starting line of the sledding adventure as our driveway. Yes, my driveway (with its roughly 20 degree slope) can double as a sledding hill. Made for a fun time today, but as you can imagine, it's not so great when trying to drive up it and into the garage after a snow or ice storm. Fletcher seemed to like sledding, and doesn't mind the cold weather, at least for short periods.

Unfortunately (or fortunately?), Trevor wasn't able to work up a whole lot of speed, and if you caught a glimpse of Fletcher riding down the two-story inflatable slide at my work party this fall, you know he is a speed demon (actually during his trips down the slide his face revealed a mix of terror and elation, but mostly the latter, at least that is what I assumed since he would squeal with delight when Trevor started climbing the stairs for another trip down the slide).

Happy Second Birthday Fletcher!

2008-12-01T23:00:00.005-06:00

I can't believe my baby is two years old. Just like last year, I put together a little photo montage to chronicle Fletcher's second year. His growth obviously isn't as dramatic as it was in last year's video (although I do have to say his hair growth is, I forgot what a little baldy he used to be). I feel the need to include a disclaimer that I have recycled a lot of my favorite photos which I had already posted to this blog. There is, however, quite a few never-before-seen photos and a sweet little musical accompaniment. So, if you have 3.5 minutes to spare, click and enjoy.

Make video montages at www.OneTrueMedia.com

Good News and Bad News

2008-11-18T20:20:00.007-06:00

First, the bad news. When I returned to work after having Fletcher, I returned in a part-time capacity. Fletcher needed to be my priority and I wanted the flexibility of a reduced-hours work schedule to accommodate his needs. I was hesitant to take on additional responsibility because I knew that would interfere with Fletcher's optimum care. I will never regret that decision. However, enter the perfect storm of less-than-ideal market conditions, one of our biggest clients going under, my boss retiring, and a sharp decline in deal volume, and I think you know where this is heading. I have read that the key to job security in economic downturns is making yourself indispensable. Well, in order to maximize flexibility, I had set myself up to be the exact opposite. And, as a result, on Monday I was dispensed. Laid off. Dismissed. Let go.

Yes, I am going to miss this skyline view from my office window.

But I am happily trading it for this one.

While this isn't what I planned for, or what I would have chosen given the option, this does give me the opportunity to be a full-time mom for a little while, which brings me to the good news. If all goes as expected, Fletcher will be a big brother this summer! My wonderful sister Angie (Dorothy in the Halloween post below) is nearly 11 weeks pregnant as our gestational carrier. Fletcher's little sister is due mid-June. My mom has been giving Fletcher one of his cousin's dolls to play with to get him used to the idea (see the camera phone photo below). He does like to cuddle, but usually ends up chewing on its head. Yikes.

Cutting Back

2008-11-08T10:20:00.005-06:00

Times are tough, and I haven't talked about it here much, yet, but if you have ever read any other blogs about kids with special needs, or if you are reading this, chances are you know first hand, that all of the therapies, equipment, medical bills, special diets, etc., etc. are not cheap.

So, like everyone else, we are trying to curtail our discretionary spending. No more fancy kid-themed hair salons for this boy. Being frugal is doing nothing to improve my scissor skills, however, so I enlisted the help of the best jack-of-all-trades that I know... Grandma. Cousin Maren was the willing assistant. She asked if she could cut his hair, and when we refused, she volunteered to be the official comb dipper (in water) but that still was too risky, so she agreed to just distract Fletcher when necessary.

The First Cut with Maren Assisting by Putting on Chapstick

(the girl is a chapstick fiend)

Not Too Worried About Fletcher's Tentative Expression but the Help's is a Little Concerning

Not Too Shabby, Thanks Grandma!

Check out those Molars

While we had to clean up our mess afterward, and there was no cool pink camo smock for me to wear while I held him (in fact, as you may have noticed, his Child-Rite seat did a pretty good job positioning him at first, although to get the back I did have to hold him), overall I think it was worth saving the 25-or-so bucks.

Wordless Wednesday: Preparing for Winter

2008-11-05T21:48:00.002-06:00

Grandpa Adams

2008-11-03T23:00:00.006-06:00

Today was a beautiful day. The weather was perfect, Trevor was home, Fletcher was happy and healthy, we had a nice dinner at my dad's favorite restaurant with my entire family (except my 16-year-old sister who was, get this, sleeping. At 6:30 pm. Oh, 16-year-olds) and all the kids were even relatively well-behaved. It was a great time, except for one thing, the occasion we were marking with this dinner. It is the five-year anniversary of my dad's death. Five years ago today he was driving my then-just-turned-11-year-old sister to choir practice when he suffered an unexpected and fatal heart attack.

I know this blog is supposed to be mostly about Fletcher, and I try to keep it upbeat even in the face of all of our challenges, but I just couldn't let today go by without at least acknowledging my dad and how much he is missed. I show Fletcher pictures of him from time to time, the grandpa he will never know, and I can't help but feel sad. You see, his personality was larger than life, and pictures alone could never do him justice, nor can a few little lines hastily typed on a blog in the middle of the night.

My little brother Kenny found another way to remember him, but he didn't use a blog (oh, 23-year-olds).

Dog Wrestling

2008-11-02T22:49:00.004-06:00

Fletcher has been taking more of an interest in Zoey lately. He will track her visually across the room and will look around on the floor if you ask him where she is (which is a big deal because he doesn't like to look down without coaxing due to either visual or motor difficulties, it is hard to tell which). In fact, when she is around he pretty much has an eye on her at all times, at least if he is also on the floor, because she has a bit of a licking habit. I know, surprise, surprise, she is a dog after all.

For the past year and a half, we have done a decent job of keeping the two separate, as Zoey can get a little over-exuberant with her licking, and being a typical dog who loves to kill and eat squirrels and rabbits and anything she can catch (I mean, that is typical, right? I don't have some blood-thirsty crazed killer living under my roof, do I? I mean, she has only been successful two or three times in the past year), you never know where that tongue has been.

Now that he is almost two, Trevor and I have decided to allow a little more interaction. So Fletcher and Zoey got to play together tonight. Trevor was referee to keep the face-licking to a minimum.

Note that Fletcher is wearing the Babylegs I bought him as part of his munchkin costume. Although I am sure Trevor will protest, I think they are going into the regular wardrobe rotation... they are too cute!

Happy Halloween

2008-10-31T23:59:00.008-05:00

Furthering the tradition I began last year (which also happens to dove-tail nicely with the fact that I am not really into dressing up for Halloween), Fletcher dressed up in keeping with my sister's family's Wizard of Oz theme. Ironically we actually WERE in Kansas.

Tin Man Trey, Cowardly Lion Greg, Scarecrow Michael, Munchkin Fletch and Dorothy Angie

Representing the Lollipop Guild

Enjoying an Unseasonably Warm Trick-or-Treat with Spider Alexa and Kitty Cat Maren

Hanging out with Mom

Sampling the Costume Prop

Fletcher did love to chew on the lollipop, too bad I was a spoil-sport and never took off the wrapper! I also didn't bring a bag with us when we made the trick-or-treat rounds, because you know who would end up eating all that candy and I have no willpower. Trevor was flying, so he didn't get to participate, but that is why I am being so good at posting these pictures now, so he can see all the fun. Missed you!

ABR: Fifth and Final Training Day

2008-10-31T23:34:00.007-05:00

We practiced and videotaped our final exercise, jaw/larynx, and of course since it was my turn to demonstrate the technique Fletcher decided this was the one time he wouldn't sleep through the taping. Luckily he cooperated and we got some good shots.

The last half of the training session consisted of a wrap-up. Speaking of wrap-up, Marcela does an excellent job of really summarizing what I too feel is the take-away of the week here. The trainers reviewed the key points of the therapy, answered our questions, and discussed administrative matters such as the next training sessions and the satellite logistics (our next three training sessions will be done at their satellite location outside of Dallas). They also talked about the future option of renting an ABR machine that can do some of the exercises as a supplement to the manual technique. It is not available until you have more or less mastered the basics of the technique, and rents for a pretty penny, but it can triple the ABR hours administered, so the potential benefits are substantial.

At the end of the session we had a little time for pictures. We had a great week. It was exciting to learn more about ABR. But equally, the excitement came from meeting some really wonderful people.

Fletcher and Our Trainer Fehim

Moms & Boys

Dads & Boys

Fletcher Taking Nathan's Ormesa Bug Stroller for a Test Ride

Are we glad we did this? Certainly. Will ABR be a cure for Fletcher? No, but as Leonid says, it is an opportunity. I think Fletcher has tons of potential. To the extent it is his structure holding him back from improvements with his motor skills, I am sincerely hoping ABR will help him improve in this area. That way, any gains he makes in motor cognition or skill and any rewiring of the brain from other therapies, or heck, from just living life, will translate easier into functional gains. Only time, and dedication, will tell.

ABR: Fourth Training Day

2008-10-23T21:26:00.005-05:00

No evaluations today, so we got to sleep in and catch up on some laundry and other housekeeping matters. Being a commercial airline pilot, Trevor stays in hotel rooms three nights a week, and as such, has perfected the art of trashing them. Thing is, when he is working, he is not in the same room more than one night in a row and doesn't have to deal with his filth the next day, so despite housekeeping's best efforts, I had a little straightening up to do this morning. I thought you went on vacation to avoid housecleaning (not that this is your typical vacation).

Oh, and before I forget, I wanted to add one last little story about our evaluation with Leonid yesterday. As I explained in my last post, Leonid is not exactly Fletcher's favorite person, for understandable reasons. After the evaluation was over, and we had been debriefed and Fletcher was calm and resting his head on my shoulder, we were saying our goodbyes and Leonid gave Fletcher a gentle pat on the back and said, until next time, I hope you don't hold and grudge. And sure enough, as soon as he heard his voice, Fletcher started fussing. Yes, my son can hold a grudge, just ask his PT... right, Kristy?

Today's training session went very well. The first hour was spent filming the anterior neck technique we learned yesterday. Fletcher cooperated and fell asleep about 20 minutes into the session, so we were able to film him while he was asleep.

The fact that our training sessions fall right in the middle of Fletcher's prime napping time is really a double edge sword, though. The last few days it has been to our benefit, but it just as easily could translate into fussy over-tired Fletcher for the entire three hours. We kind of saw both sides of Fletcher today, as we prematurely woke him from his nap when we were trying to get him into position to work on our third a final exercise focusing on the jaw and larynx. Fletcher has never taken a pacifier, but we have found something that works just as well-- the z-vibe. Usually we have to put it in his mouth and he is a happy, chewing fool. Today at times it worked just as well when he was even just holding it in his hand.

Our Trainer Fehim Demonstrating Our Final Exercise

After session we headed to Old Montreal to catch a light and sound show at Notre-Dame Basilica. It was a brief history of the city and the Basilica and we got to take a brief look around the sanctuary after it was over. It was really quite beautiful. We tried to get some photos, but our camera ran out of batteries and the still-frame shots we took with our camcorder will be stuck in there for months before I figure out how to upload them. I lit a four-hour candle and said a prayer for Fletcher and our ABR endeavor (I am not catholic, and this isn't something I routinely do, but I do remember the last candle I lit was at the Notre Dame de Paris and prayed for my then-three-year old little sister who had just had to have half her pinkie finger amputated). Random little bit of family history there for you.

ABR: Third Training Day and Leonid Evaluation

2008-10-22T21:04:00.016-05:00

We got Fletcher up a little earlier today and made sure he had a full breakfast, thinking that hunger may have played a role in his crankiness during his evaluation with Gavin yesterday and giving him more to eat would put him in better spirits for his evaluation with Leonid... not so much. I don't know if he is going through an attachment phase, or he just doesn't like being stripped down to his diaper and poked and prodded (who would?) but he threw an even bigger fit with Leonid than he did with Gavin. Complete with quivering jaw and tears.

So, we broke up the evaluation into three segments, letting him cry in order to get the necessary positions and information, and then I would calm him down and we would talk for awhile. He calmed really quickly, but as soon as I handed him back over to Leonid, the tears would start back up. In fact, by the time the second break came around, Fletcher was so tired from screaming that he fell asleep in my arms. Unfortunately, we still had a couple more positions to film (the whole evaluation is filmed so we can review it, and Leonid's commentary, at a later date) so not only did I have to give him over to do something he does not enjoy, but I had to wake him up to hand him over. Not good.

Because he was so upset, he threw himself into extension and tightened up a lot more than he normally does, but I guess it is good for Leonid to see him during his worst times, so he knows exactly what we are dealing with. The evaluation itself was similar to Gavin's and to others I have seen online. He talked about Fletcher's neck (or lack thereof) and basically how this has led to the back of his skull being closer to his back, thus shortening his muscles, thus making them tight, and finally, how this leads to Fletcher's favored position of tilting his head back, which is the most comfortable given the tight muscles back there. Kind of the same basic explanation for all of Fletcher's atypical favored positions.

I guess the bottom line is that, since Fletcher's internal smooth muscles (which are oversimplified terms, but I am no doctor or scientist, so it is the best I can do) are not built up, his skeleton is more or less collapsing in on itself and the bones don't have enough room to move independently, so he moves as one block. It was the most evident when he was laying on his side and Leonid rolled him at the shoulder and his whole body (including pelvis and legs) moved as well. This collapse has led to most parts of his body being in the wrong place (and "wrong place, wrong movement" so the resulting functions of these body parts are affected). His jaw is sightly recessed, adam's apple very high in his throat, clavicle wrapping around his neck, shoulder blades too high, ribs flared out at the abdomen, no butt (thin and narrow pelvis), no rotation at the waist, you get the idea.

Leonid really likes to explain in analogies to get the basic point across before getting into the details (which can be overwhelming to parents, including myself). He used the analogy of the car and driver and explained that therapies that focused on motor cognition (the driver so to speak), while worthwhile, will not get you very far if the car (ie the body's structure) is broken down to the point it won't go (or won't go very efficiently). So ABR focuses on the car, and only once that is in good enough shape, then the driver's skill is relevant. It is a very basic analogy, and oversimplifies things, as so many analogies do, but I think it a decent one, nevertheless.

Another interesting thing we discussed in the eval was the ATNR. He explained how its persistence can be a sign of structural issues rather than neurological issues. I can't remember the details right now, but it completely made sense at the time.

I didn't push Leonid to "rate" Fletcher or anything like that. He saw a few positive things (like his skin wasn't as wiggly as he expected it to be, indicating something positive about the subcutaneous tissue, but I can't really remember what (I'll have to go back to the video and review that part)). But the biggest challenge will be the arching/tightness. He basically warned us that there is a good chance that before Fletcher's muscle tone normalizes he may go from tight to even more floppy (temporarily), but we just have to realize that is actually improvement, even though to us it will seem like more of a nuisance.

Next was our third training session. Fletcher fell asleep after the evaluation and continued his nap for the first hour or so of training, so Trevor decided to capitalize on the opportunity and got in about 45 minutes of the thorax exercise we had been practicing the prior two days.

I am thrilled that Fletcher was able to sleep while Trevor was administering the technique as there is a lot less interference from the baby this way, and if we actually succeed in getting in our goal of three hours per day of therapy, I'd imagine a good portion of it will be done while Fletcher is asleep, if possible.

We also learned our second exercise today, which involved the anterior neck. I am a little nervous about this exercise, because obviously, I don't want to choke Fletcher. Although I know he can't talk and tell me if I am using too much pressure, Fletcher has never had a problem letting anyone know if they are doing something he doesn't like, so I am sure we'll be fine.

Trevor and I were supposed to practice this technique on each other at our hotel tonight, but I just couldn't resist the siren song of IKEA, so we will have to fit a little practice in tomorrow (don't tell Fehim-- which Jennifer so kindly told me was the correct spelling and pronunciation of our trainer's name).

ABR: Second Training Day and First Evaluation

2008-10-21T18:55:00.005-05:00

Fletcher's first evaluation was this morning at 10am. Everything was just fine as Fletcher sat on my lap and we talked to the evaluator about his preterm birth and everything leading up to the MRI and subsequent diagnosis. The fun and games were over as soon as the evaluation began in earnest, though. First we had to strip Fletch down to his diaper and lay him on a firm work bench while a stranger manipulated him. I think he had flashbacks to the myriad doctors appointments after he came home from the NICU and he was not having any of it. As such, the evaluation was cut a bit short, of course that left lots of time for my questions, so I was in heaven. And, truthfully, Fletcher will have an almost identical evaluation with Leonid tomorrow, and today was more of a warm-up or study session for the real deal.

Now, I am going to plagiarize this next segment from a mommy blog of another woman who is also up here for evaluation, so Katy, since you are a teacher and all, and I am sure you are very keen to such things, I will credit you up front. I think she did a perfect job briefly describing her son's eval, which was very close to Fletcher's, so I am just stealing her description and adding Fletcher's name instead of Charlie's. Yes, I am that lacking in creativity. So... Fletcher is a classic cerebral palsy kid. He's got all the signs: His neck is too short, his rib cage has a diamond shape, his pelvis is very thin, and his legs splay outward from his body like a frog. His arms move from the scapula rather than the ball of the shoulder, and his legs are very weak at the pelvis. So, the bad news is that its a lot to work on and Leonid will only get into it further tomorrow. The good news is that since he's pretty classic, they've got a lot of ways to help him.

Because he was throwing a fit, we didn't get to really dig into a few of the positions that Leonid will place him in tomorrow, so hopefully we will gain a little more insight then. Of course Fletcher's tone increases dramatically when he is upset, so I am sure that is bound to skew the evaluation slightly.

Next up was the second training session. Trevor and I first practiced our technique on our instructor, and next moved on to Fletcher. Fletcher was very cooperative with Fhilin (Trevor suggested this spelling of his name, all I know is it is pronounced Phill-eene). While Fhilin did the ABR technique Fletcher just sat, or laid, there with wide eyes, like he was in a trance or something. On the other hand, when Trevor and I tried it on him he was a bit more feisty, trying to grab our hands and chew on our fingers. But overall it when very well.

Fletcher's First ABR Session

ABR: First Training Day

2008-10-20T21:13:00.007-05:00

We had our first training session at the ABR Center today. We got there nearly 45 minutes early (so you know I wasn't in charge) so we hung out for awhile and got to chat with Jessica and Paxson and Melanie, Daniel and Lonnie.

Jennifer, Paxson, Melanie, Daniel, Erin, Fletcher

Our first three-hour session started off with a lesson on how to fold towels. I am not kidding. Apparently it is very important for the technique to fold the towels just so. According to the trainers, towels are used as “air cushions” to ensure that there is no compression of the superficial tissues (skin and superficial muscles) and allow the energy to go through the barrier of skeletal muscles to reach the deepest layers (smooth muscles). Trevor and I had to practice building up the towels just so and practicing on each other, so we could give each other feedback (something obviously Fletcher cannot do) and help each other learn the technique. I must admit, Trevor is much better than I am at this.

Fletcher Wondering Why Mom is Laying Under a Pile of Laundry

I am still not sure how this all is supposed to work, but I can tell you one thing. The trainers claimed that this therapy is very relaxing to the recipient, and I can attest to that. Quite a departure from traditional therapy, that is for sure!

After our session, a few of us from our training class, including Marcela, Owen, and Nathan and Jennifer, Todd and Tyse (who you can "meet" at their carepage (care page name: Tyse)) headed over to the Botanical Gardens. It was a little chilly, but I had a nice time checking out the exhibits and chatting.

Entrance of the Botanical Gardens

Jennifer, Tyse, Erin, Fletcher, Owen, Nathan

Family Picture at the Chinese Garden's Magic of Lanterns Exhibit

Magic of Lanterns Exhibit

Todd, Tyse, Owen, Nathan, Trevor, Fletcher

It was so nice to really be on the same page as other moms. At one point, Marcela said, "Ooh, Fletcher has nice tongue lateralization" which turned into a whole discussion about feeding and augmentative communication. I can not tell you how thrilling that was for me. Those of you with no kids, or "typical" kids, probably think I am crazy, but all you special moms out there totally know what I am talking about.

Fletcher has his first evaluation tomorrow morning and our second training session in the afternoon, where we will start practicing the technique on Fletcher instead of each other. Sometimes the baby can get fussy during eval or training, so we are keeping our fingers crossed that Fletcher takes this in stride like he does most everything else!

ABR

2008-10-19T21:30:00.012-05:00

As I mentioned in my prior two posts, Trevor, Fletcher and I are in Montreal this week to learn a new therapy called Advanced Biomechanical Rehabilitation (ABR for short). There is lots of information in the link I provided in my last post, but I thought I would excerpt a portion of the website for those who want just the basics:

ABR in a Nutshell

Everyone believes that CP children have poor functions because their brain is too damaged to control normal movements. Respectively CP children are considered incurable because the brain damage is irreversible.

ABR has a different philosophy. We believe that even the badly injured brain has enough electrical plasticity to control normal motor functions, however for this plasticity to “switch on”, a child’s musculoskeletal structure has to be improved to a sufficient level - plasticity threshold. Existing treatment methods fail to achieve recovery of motor functions. This failure is then being blamed on the brain damage.

We believe that the answer is different. Existing treatment methods fail not because of insufficient “reserves” of the damaged brain but because they fail to provide sufficient structural improvements to the musculoskeletal system. As a result, the injured brain has “too little of a good musculoskeletal structure to work with” and cannot show its remaining plasticity (reserves) for control of motor functions.

Musculoskeletal structure reconstruction must come first!

ABR approach makes restoring the mechanical structure of the musculoskeletal system its first and primary goal:

full range of movements (ex. head being able to move unrestrictedly in all directions)
proper alignment (ex. legs and pelvis; arms and shoulders, etc.)
muscular mechanical response (proper muscular balance)

In turn, “quality of mechanical performance” requires “bio-mechanical capacity” of the musculoskeletal system which implies:

Proper volume, tone and strength of the skeletal muscles
Proper volume, mobility and alignment of the joints
Equilibrium of strength and length between reciprocal muscular groups (ex: biceps, triceps)
Adequate proportions between size and strength of centre (head, neck, trunk) and periphery (arms and legs)
Cascade of muscular interactions (centre to periphery)
ABR re-establishes, unit by unit, proper skeletal and muscular structure to permit proper, unrestricted performance of movement.

Today all the families beginning their ABR training met for a presentation about the theory behind ABR and the basic premises (as outlined above and discussed further on the ABR Canada Website). Tomorrow, we will break into smaller groups and begin our week-long training on the technique. On Tuesday and Wednesday Fletcher will be evaluated by Gavin, an evaluator based in the Montreal office, and Leonid Blyum, the founder of ABR.

As exciting as learning a new technique that will help Fletcher gain strength and ultimately improve function, almost equally exciting is that I am getting the opportunity to meet some of the women I "know" from the computer. I know so much about these families through their blogs, and it was actually really surreal to meet them in person. I just keep staring at these kids, about whose stories I have spent hours reading, looking at their cute pictures, and here they were, sitting in the next row. It was almost like seeing a celebrity in real life! I met Melanie and Daniel briefly in the hallway, sat next to Jessica and Paxson, had a quick chat in the parking lot with Katy, and had lunch with Marcela, Owen, and Nathan.

The Boys (Owen, Nathan, Fletcher and Trevor) After Lunch

It was wonderful seeing people like me, and kids like Fletcher. I couldn't believe how similar Nathan and Fletcher are. Nathan was laughing and "talking" and it was so weird, if I had closed my eyes I would have sworn it was Fletcher (and every mom can pick their child's voice out of a crowd... it was seriously that identical).

Of course, I can't travel to a new city, and different country for that matter, and make it soley about the therapy. So, we headed down to Vieux-Montreal (Old Montreal) this evening and took a guided carriage tour around the historic district. Yes, we are unabashed tourists, although we only took two pictures (so not too bad): the one below and an identical one after the ride, only Fletcher is sound asleep. Either the history lesson bored him or the horse's gait lulled him into dreamland. Either way, do you think it impractical to schedule carriage rides every day for his afternoon nap?

When Your Toddler Doesn't Toddle

2008-10-18T20:42:00.007-05:00

Fletcher has been diagnosed with Cerebral Palsy due to a brain injury he sustained as a result of his extreme prematurity. I still plan to back up and fill in some journal entries from his time in the NICU, and I will go into more detail in those posts.

Before Fletcher's diagnosis, pretty much my only exposure to a person with CP was Blair's cousin on the sitcom Facts of Life. In other words, nearly none. It has been a steep learning curve, and I still have much to learn, but learning about cerebral palsy and how it affects Fletcher has been my focus for the majority of the last year. Cerebral Palsy is hard to classify because it manifests differently in every person. The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time. I found that definition, along with a good basic explanation here.

For the last, 21 months, beginning mere weeks after Fletcher came home from the NICU, he has been doing what many consider "traditional" therapy to combat the effects of his cerebral palsy. He began with occupational therapy (OT) twice a month. After a few months OT was increased to weekly and physical therapy (PT) was added. Over time new therapies have been added and the frequency of others increased. Currently Fletcher has PT two times a week, OT once a week, vision therapy/early childhood special education once a week, aquatic therapy once a week, speech therapy once a month (increasing soon to two times a month) and sees a nutritionist once a month. Luckily for us all of these programs are paid for by our local early intervention program, Infant Toddler Services of Johnson County (see the link in the right hand sidebar for more info), and all but the aquatic therapy is provide in our own home.

We have seen Fletcher make steady progress with these therapies, but, for Fletcher, I feel like we need to be doing so much more. And there are plenty of alternative therapies out there. Problem is finding one that is right for your child, as each kid can respond differently to a particular therapy. Another CP momma, or should I say supermomma, seriously, this woman is an incredible mom and advocate for her son (and believe me, advocate is one of the biggest roles you play as a parent to a child with special needs), put together this therapy approach that illustrates all of the options her son has tried and others that she is researching. It is not an easy choice as it would be impossible to do them all because these alternative therapies are not covered by insurance, are not cheap, and often are quite time consuming with no guaranteed results. You can research all you want, but at some point you have to take a leap of faith.

I have taken my first leap and tomorrow begin a week-long program learning the basics of ABR.

Mission Statement

2008-10-18T20:24:00.001-05:00

Up until now, I have been using this blog as little more than a photo album. As I have mentioned in the past, I have grander plans for it. In our effort to build our family, Trevor and I have been through many less-than-typical experiences. We struggled with our special brand of crazy genetic-based infertility and the ensuing IVF cycles, then I developed preeclampsia/HELLP syndrome and had to be hospitalized, next were Fletcher’s extremely premature birth and three month NICU stay, and finally, our daily life dealing with Fletcher’s special needs. All of these situations are not the norm, and each can be very isolating, let alone all of those challenges in the aggregate. These are not the topics of play date banter or water-cooler discussions at the office.

So, for support and information, I frequently turn to the Internet. It has truly changed my life. Instead of feeling like I am the only person dealing with these situations, I have found communities of people (well, mostly women) who have walked the walk, so to speak. I have learned so much from these women who take the time to chronicle their special children’s successes and set-backs, as well as their own, as special moms. In fact, as I type this, Trevor, Fletcher and I are on a plane bound for Montreal, Canada to pursue a new therapy I discovered through a fellow mom blogger.

I feel like it is finally time to start giving back. I am going to try to start posting a little more in-depth about Fletcher’s challenges and the way we are addressing them. This is not an easy thing to do in such a public forum, even for a fairly open person like myself. I have no way to control who accesses and reads this blog without “going private” and restricting access to only those I invite into the readership. But going private is not an option if I want this blog to be a resource, or at least small source of comfort, to people like me who hope to learn from other people’s experiences and feel not so isolated and alone. So, I am willing to step a little outside my comfort zone and really try to open up about the realities of our daily life.

National Pregnancy and Infant Loss Remembrance Day

2008-10-15T10:57:00.002-05:00

Tonight I will light a candle in loving memory of

Owen Riley Slinker and Megan Nicole Russell.

The Lake

2008-09-13T21:06:00.008-05:00

Over Labor Day weekend Fletcher and I joined my family at our grandparents' cabin at the Lake. It is a very small three bedroom cabin, but growing up we used to pack it full of up to 10 adults and 10 kids, the latter sleeping side by side like sardines on the floor. This time it was just my immediate family, so Fletcher and I got a bed all to ourselves.

Being an overprotective mom to a baby with poor head control and an oral fixation, I was a little hesitant to bring Fletcher swimming in the lake, should he inadvertently, or rather intentionally, if he got his way, gulp a few mouthfuls of the water (fresh spring water it ain't). On Friday I even brought a blow up pool and hiked up and down the hill from the lake to the cabin to fill it with tap water. However, I am trying to give him as many typical kid experiences as possible, so on Saturday I relented.

Here he is in a boat borrowed from one of his aunts (thanks Niki!). It didn't offer great trunk support, but the baby float I usually use has a much lower profile and he can get his mouth way too close to the water.

Drying off with Grandma.

I like to call this one "Everyone Loves Angie."

Because I am just that mean, the highlight of the weekend had to be when my mom fell, fully clothed, into the lake when trying to board the paddle boat. Being a good sport she just swam over to the the ladder on the dock, climbed back up and tried again. Luckily Fletcher and I boarded safely on the first try and he loved it. Hopefully next time we make it down to the Lake Daddy won't have to work and he will be able to join us.

Reaffirmation of Faith

2008-08-24T22:17:00.012-05:00

Not too long ago Trevor, Fletcher and I became members of a new church (well, new to us). I was brought up in a different denomination, but had gotten out of the habit of attending services. Many things have come out of Fletcher's preterm birth, and one of them has been my new appreciation in, and reliance on, my faith in God. This particular church, while much larger than what I was used to, is a good fit for our family, in part because I really enjoy the senior pastor's thought-provoking sermons (he even has his own blog), but mainly because this church has a program called Mathew's Ministry, which serves people with special needs. Although I have yet to sign Fletcher up, I can't tell you how excited I am about this program.

We arranged a Reaffirmation of Faith ceremony for Fletcher during the 10:45 service last Sunday. Procedurally it was the same as a Baptism, however we had already had Fletcher baptized in the NICU when he was four days old. This was not a good memory for me. I was still very sick, my eyesight continued to be compromised from my preeclampsia/HELLP syndrome, I had not even been allowed touched Fletcher yet, he was so tiny and fragile although he was in his "honeymoon period" so temporarily on c-pap and doing well for the moment, but still under the billi lights (which they turned off for the ceremony) and we had only named him moments before (and in truth, because he needed one to be baptized, the baptism was the sole reason we finally settled on a name). The pastor had to wear gloves and with one hand reached into the isolette and using a syringe dropped a few beads of sterile water on his tiny head and dabbed it with surgical gauze. Don't get me wrong. I am so grateful that the pastor held this ceremony and that the NICU accomodated my request. At the time, although my head was so fuzzy I don't remember a word, it had a very calming effect.

More than anything, I arranged the Reaffirmation ceremony because I wanted to replace the memories of that scary, emergency baptism with celebratory memories. I wasn't disappointed. The ceremony was touching, as the pastor explained to the thousand people or so in the congregation (I told you it was a large church) about Fletcher's early birth and his fighting spirit and the grace of God that brought him home to us. He touched on his disabilities and asked for the congregation's support and praised God for Fletcher's life and blessed him. Afterward we had a brunch at our house for some of our family and friends (including Fletcher's therapists, who are practically like family now!).

I was really too busy hosting to get any great pictures during the brunch and no flash photos were allowed in the sanctuary, but I thought I would share a few.

Baptized December 4, 2006

Reaffirmed August 17, 2008

Family Photo from the Brunch

At the risk of making this last paragraph sound like an acceptance speech, I can't forget to thank Trevor's brother Todd, who flew in from Orlando, for helping to get our home party-ready. I had a big to-do list and Trevor was tied up cooking in the kitchen most of the weekend. Also, thanks to my sister, Angie, for being an awesome sponsor and also helping with the food, my mom for making the pastries, doing yard work, and watching Fletcher while I cleaned house, my brother Jay for helping Trevor in the kitchen, my brother Kenny for helping with some yard work, and my friend Kim for letting Fletcher borrow her son Gabriel's adorable christening outfit!

First Haircut

2008-08-02T19:24:00.002-05:00

One of the items we bid on and won at the Friends of Infant Toddler Services Gala was a haircut at a local just-for-kids hair salon. This may seem like a luxury, but let me assure you, my poor scissor skills (seriously, I was reprimanded over this, in yearbook class, in high school) plus a kid with less-than-perfect head control, is a disaster waiting to happen. So, we decided to do it up professional-style for the First Haircut.

Before: My Wild Man

The First Cut: A Bit Apprehensive

Still Not Too Sure

Maybe It's Not Too Bad

After: My Handsome Little Guy

Never Enough Time

2008-07-20T22:46:00.020-05:00

I have all of these grand plans for the old blog, really I do, but man, this parenting thing is a little time consuming, ya know? I really admire those bloggers who actually manage to post regularly. I really wish I could be that disciplined. My main goal for this blog is to have a record. To be able to look back and see what Fletcher was doing and when. Or, if I really get ambitious, maybe I would throw in a few observations or an explanation or two. For instance, I would love to do a post like this one, kind of summing up the little things, the memories that will fade in a few months or years or one like this, which does a wonderful job of expressing the mixed feelings of pride and sadness at seeing your child struggle to accomplish the things others take so easily for granted. I feel like this on nearly a daily basis, and maybe some day I will share these observations and feelings in this blog (by the way, could those boys be any cuter?? They were born the same day as Fletch at roughly the same gestational age, and I really enjoy this blog because it kind of gives me an idea of what Fletcher would like to be doing if his body was more cooperative).

Unfortunately, my main goal has yet to be accomplished. Since my last post we have done so many things. A big trip to Texas to see Trevor's family, including Fletcher meeting his Grandpa Smykay for the very first time, more botox, insurance woes, a golf tournament with Fletcher and me serving as honorary chairmen, the list goes on. I really do plan to blog about some of those things, eventually. Tonight, however, I plan to take a small step toward that goal. So in a year or two when someone asks me what age Fletcher started to self-feed, I can say, let me check my blog... oh, on July 8, 2008 he started to independently eat little crunchies.*

Okay, a couple of clarifications for purposes of full disclosure. I may be stretching when I say self-feed or independently, as I do have to position the crunchie just so, in a way where he is able to hold it but it still sticks out far enough to get it into his mouth. But, to me it is the first step to self-feeding, and the only one we may see in awhile as he is nowhere close to holding his bottle or sippy cup on his own, so I'll count it.

Here is a little photographic proof. I regularly encourage him to hold his finger food or utensils and he always tries to get them into his mouth, and sometimes does, but has problems holding them there (what I call a "feeding drive-by"). The first picture is when I first noticed he was actually managing to eat the crunchie, but I thought he was pinning his arm with the ball and that was how he was managing. But, to my surprise, I took the ball away and he was still managing to get the food to his mouth and keep it there long enough for the bite.

So, there it is, my first pseudo-real-time report about Fletcher's development. Hopefully there will be more timely updates to come.

Until then, I also just have to post my current favorite picture of the little guy. It is just an informal shot Trevor took while Fletch was doing a little stander time in the kitchen the other morning. First haircut is on the horizon, so enjoy the crazy 'do while you can!

* For you non-toddler-moms, a crunchie is basically a cheese puff, but by a different name so we can pretend that we are not feeding our kids junk food.

March for Babies

2008-06-23T22:25:00.011-05:00

Um, did you really believe me in my last post when I said to check back in a week for pics and an update from March for Babies? Then you must not know me very well. Yes, it is a month and a half later, and I can't claim that this post was worth the wait, but I do have some cute pictures.

Team Captain

Partial Team Picture of Team Smallest Smykay

Cool Guy Sporting New Shades

Fletcher's Sign on Baby Boulevard

Cousins Trey and Alexa

(check out their cute "Mini Fletch" Buttons)

Action Shot

This was a great event. The weather was terrific, the venue (the new Power and Light District in downtown Kansas City) was perfect, and there was loads of food and fun activities for the kids. Fletcher was perfectly behaved and believe it or not slept the entire walk as he did during the Trolley Run. The upholstery of my jogging stroller must be laced with ambien or something. Our team also raised a lot of money for a great cause and we missed placing in the top ten family teams by only $50. Thanks again to everyone who participated or donated to Team Smallest Smykay!

Two Down, One to Go

2008-04-27T14:36:00.020-05:00

As many of you know (since I hit you up for donations) it seems to be fundraising season, at least in my neck of the woods. I serve on the Board of Directors for an organization called Friends of Infant Toddler Services of Johnson County, which supports our local early intervention program. We held our 6th Annual Stepping Stones Gala on April 12th, which included dinner, drinks, DJ, and silent and live auctions. It was a lot of work (mostly by board members other than I) but was also loads of fun and a great success.

This morning was the Trolley Run, a 4 mile run/walk down the old streetcar/trolley tracks (actually the largest timed 4-mile run in the US), that benefits the Children's Center for the Visually Impaired. I haven't posted much about it, because eventually I want to do a Super-Long NICU Summary here, but Fletcher has vision processing difficulties and receives services from CCVI. It was nearly a record cold morning in KC, but we had a great turn out for team Smallest Smykay (thanks to all who participated and donated!), and I for one finished the 4 mile course in a record time of just under 2 hours (stoping to placate babies takes time, you know). Fletcher was picture perfect the entire walk (in large part because he took his morning nap from start to finish). Here are a couple pics from the run (including one of Fletcher this morning before the race... pretty chipper for a little guy who decided he wanted to get up at 5:15 this morning, guess the anticipation was too much for him).

Our Family Team Shirt

Partial Team Picture of Team Smallest Smykay

(the runners were long gone by the time the stroller crew crossed the finish line)

My Brother and Niece at the Finish Line

My Aunt, Sister and Nephew Enjoying the Band

Our Inspiration!

Our third and final fundraiser is the March for Babies next weekend. There is still time to help me reach my goal. Just click on the link in the right hand margin to learn more about the March of Dimes, how research funded by the organization helped to save Fletcher's life, and to pledge your support. Hopefully the weather will be a bit warmer for this walk. Check back in a week or so for pictures and an update. Until then, here is a little preview of the team shirts I designed. They look great on paper, if I do say so myself. I just hope they get in on time!

Blog Redesign

2008-04-16T22:14:00.003-05:00

So, it seems like everyone has begun spring cleaning and redesigning their blogs. I haven't had much luck at the former, but as you can see, I spent a few moments tonight doing the latter. I got my inspiration, or rather ripped off, two blogs I love to read. All you have to do is check out Cute Blogs for your background and Scrap Blog to make a banner. The best part is that it is free. And it must be super-easy if I was able to do it.

Happy Easter

2008-03-23T23:05:00.011-05:00

Some day I will start updating more frequently than every major holiday.

But not today.

Happy New Year

2008-01-01T17:46:00.000-06:00

So, I have a confession. I am a horrible procrastinator. Not much of a confession to those that know me IRL, because I have been like this since the day I was born. Many times I want to post a timely post like the one above and comment on the actual day, whether it be a holiday or the anniversary of a significant day for Fletcher. But, that doesn't always happen, so I either just skip the post altogether (what typically happens) or I stay up way too late to get my post in by the midnight deadline (which is what I did for Fletcher's birthday video).

That is a thing of a past now, because I have figured out how to beat the system, so to speak. I am sure the general public using blogger realized this from the get-go, but I just figured out that you can manipulate the time and date of your post. So, for those that check this somewhat regularly, you know I didn't actually post this on New Years Day. But, a year from now when I go to print this out, I won't know any better and it will be a nice timely post as far as I am concerned. Sneaky, huh.

By the way, the photo itself was taken on New Year's Eve. Fletcher was actually awake at midnight (after a couple of hours nap earlier in the evening) but, as he illustrates in this picture, insisted on chewing on the wrong side of the noisemaker. That's okay, his five-year-old cousin made enough noise for the both of them. Who knew five-year-olds were so interested in welcoming the New Year. This girl was ready to party (unlike the adults who were in bed as soon as possible after the ball dropped).

Christmas Morning in Pictures

2007-12-25T15:59:00.001-06:00

Admiring the Tree

Opening Presents

Fletcher's Present to Mom

(on his face and my shoulder)

Which is Apparently Hilarious

Merry Christmas!

2007-12-25T12:00:00.000-06:00

Christmas Eve

2007-12-24T23:30:00.000-06:00

One Year Ago

Right Now

My mom makes Christmas Eve pjs for all her grandkids. Last year she made Fletcher's blanket out of some of the fabric. The days leading up to Christmas last year were some of Fletcher's worst. His lungs had begun to scar from the pressure of the vent and were taking on fluid. He got bad pretty quickly and they put him on some pretty heavy antibiotics for fear of infection (you can see the IVs going into his arms and he has scars to this day on each forearm from that or one of his other numerous lines). His vent settings were high and he was getting fairly regular doses of morphine because he would get so agitated and fight the vent. I don't like to think about it, but there were times that I wondered if my mom would ever get to make pjs for him.

Today, I am happy to report, is a completely different story. While every part of Fletcher's life is, and will continue to be, affected by his extreme prematurity in ways I have yet to discuss on this blog, right now he is just your average baby resting comfortably upstairs all safe and sound. And yes, he is in our bed, but we are hoping it is just a phase while he is a little stuffed up with a head cold. And even if it is more than a phase... just look at that first picture above and tell me that you wouldn't want him close to you after all of that.

Happy First Birthday Fletcher!

2007-12-01T23:54:00.001-06:00

In honor of Fletcher's first birthday, I put together a little video to commemorate his first year. I borrowed the song and some of the text from videos produced by some fellow micropreemie mom bloggers, so it may seem a little familiar, and have emailed this out to nearly everyone I know. But, if you haven't had a chance to take a look, get some tissues and enjoy!

Make photo slide shows at www.OneTrueMedia.com

One Year Ago Today

2007-11-27T22:41:00.000-06:00

One year ago today I began my hospitalized bedrest. I had been on bedrest at home for six days (with a one day pass to spend Thanksgiving at my mom's) due to what looked at first to be only elevated blood pressure (or pregnancy- induced hypertension as the docs called it). However, at my follow-up appointment the Monday after last Thanksgiving, I had begun spilling protein and lots of it and the preeclampsia was really coming on strong. I had hoped that I would be on bedrest for weeks, if not months, but as Fletcher's birthday is this Saturday, obviously that didn't pan out.

I try to include a picture or two in each of my posts, but I don't have many during my all too brief stint at bedrest, and those that I do have show one very puffy, exhausted, and terrified woman, so they are not fit to publish. So I will include one of some of the pretty flowers I got to enjoy during my stay.

I have learned a lot in the past year (or in the past 3 years as those who know me understand that I had pretty much become board certified in reproductive endocrinology before Fletcher was even conceived). But one non-medical thing I have learned in this experience is what a difference simple gifts can make. Before I was hospitalized, I didn't really "get" sending people flowers at the hospital, or even sending flowers in general, because they always seemed so temporary. However, when you are laying in a hospital bed (on your left side, of course) with nothing to do but obsess over every blood pressure reading or the rhythm of the fetal heartbeat monitor, having a beautiful, tangible reminder that there are people out there thinking of you really does help. (By the way, if you are reading this and sent me flowers or any gift for the baby and I never got around to sending out a thank you card, please accept my heartfelt thanks and gratitude for the flowers/gift/encouraging messages... seems like etiquette was the first thing that I let slide in the micropreemie madness).

Since I wasn't blogging at that time, I am considering tracking back some of Fletcher's NICU stay on the one year anniversary of the actual occurrence, but like most of my blogging ideas, I am not sure it will ever come to fruition. Maybe I will just do the lazy-man's blog post and cut and paste from emails I sent to family and friends as updates throughout Fletcher's stay.

Happy Halloween

2007-10-31T23:02:00.000-05:00

I'm not one to dress up, so to celebrate Halloween Fletcher decided to ditch mom and dad and join up with a Pirate Family (also known as my sister Angie, her husband Greg and Fletcher's cousins Trey and Michael).