Tuesday, December 29, 2009

Twas the Season

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

As always, Alexa was a big help.

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

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

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

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

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

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

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

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

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

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

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

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

Friday, December 25, 2009

Merry Christmas

"Today in the town of David a Savior has been born to you; he is Christ the Lord."
Luke 2:11

Friday, December 18, 2009

Off The Charts

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

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

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

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

But they definitely have cuteness in common!

Wednesday, December 16, 2009

Tuesday, December 1, 2009

Happy Third Birthday Fletcher!

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

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

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

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

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

Voila, a smoking volcano cake.

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

The Usual Suspects

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

Thursday, November 26, 2009

Happy Thanksgiving

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

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

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

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

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

Tuesday, November 17, 2009

Prematurity Awareness Day

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

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

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

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

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

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

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

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

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

Saturday, November 14, 2009

Welcome Audrey

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

Thursday, November 5, 2009


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...

Friday, October 2, 2009


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.

Wednesday, September 2, 2009

Tuesday, September 1, 2009

A Couple of Links

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.

Sunday, August 23, 2009

No New Post

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

Saturday, August 22, 2009

Still Here

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?

Wednesday, June 17, 2009

Wordless Wednesday: Siblings

If you want words and more pictures, go here.

Thursday, June 11, 2009

Big Brother

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

Wednesday, June 3, 2009

So Mad I Could... Twitter?

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!

Saturday, May 30, 2009

We're Back

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...

Wednesday, May 20, 2009

Happy Birthday Trevor

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

Monday, May 18, 2009

Sixth Treatment

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

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!

Friday, May 15, 2009

Fifth Treatment

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.

Sunday, May 10, 2009

Happy Mother's Day

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.

Thursday, May 7, 2009

I Had a Feeling It Wouldn't Last

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.

Wednesday, May 6, 2009

Electric Wave Therapy

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.

Monday, May 4, 2009

We Miss Daddy

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!

Wednesday, April 29, 2009

The Morning After

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

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.

Saturday, April 25, 2009

Happy Birthday Alexa!

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

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!

Friday, April 24, 2009

Blood Has Been Shed

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.

Wednesday, April 22, 2009

West Lake

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!

Tuesday, April 21, 2009

China or Bust

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.

Wednesday, April 15, 2009

First Flip

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!

Sunday, April 12, 2009

Happy Easter

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.