Disney World!

When I was growing up, our favorite vacation was always the one that ended in Orlando at Disney World. I don’t know how young I was when I first went, but I’m pretty sure my sister wasn’t around yet, which means that I was probably not yet 5. We didn’t go every year, but I’m pretty sure we went as often as we could. As for Christy, I don’t know whether or not she had the early-age indoctrination that I did, but by the time I met her she was also a Disney nerd. Since we’ve been married (went there for our honeymoon), we’ve made an effort to go once every other year. This being an even numbered year meant that it was time. 2 year old in tow and all.

Coincidentally, as I mentioned in the last post, my dad decided sometime in early summer of this past year that he wanted to take a bunch of us on a Disney Cruise. Worked for us, we were already planning on going. Christy, however, was not satisfied to have cruise days substitute for Disney World days. We were planning on 6 nights in Disney World, and she demanded to have her 6 nights. Dad was planning on doing the cruise and then 3 nights on land after the cruise, for which I wanted to join him, so I caved and agreed to do 4 more nights before the cruise. And since we’d have David with us, we told Christy’s mom and step-dad that they had to come with us for those first 4 days.

Obviously, one cannot condense 7 days of Disney World and 4 days of Disney cruise into a blog post. My posts are too long as it is. I can say, though, that it was pretty awesome. I was a little leery of doing this with a 2 year old, but he was really great the whole time. It took a day or two to get used to trying to schedule lunch and a nap in every day, but once we had that figured out, it was pretty smooth sailing.

He loved the characters - we spent more time waiting in line to see characters than we have in all of the times that we’ve been to Disney World combined. He also liked the Dumbo ride (and similar Aladdin carpet ride one) that goes in a circle and lets the rider go up in the air. The Epcot Food & Wine Festival was going on while we were there; that was pretty awesome. - lots of really good food in small portions so you could try everything. We did the Mickey’s Not So Scary Halloween Party, which was pretty awesome - street dancing (David loves music), candy, fireworks, smaller crowd. We also did Mickey’s Christmas Party after we got back from the cruise - not as awesome. MUCH bigger crowd, almost seemed like there were more people than there were during the day. Otherwise, it was just typical Disney awesomeness.

The cruise was a neat experience too. I’d never been on one of those, so it took me a day or so to get used to the motion. Christy and David never seemed to have a problem with it, though, and we all had a really good time. There was lots of water to play in, Disney’s private island was pretty cool, and David loved being able to play with Miles through all of it. The food was amazing, and we all loved the underlying M.O. of “make passengers feel like royalty”.

In the end, it was a fabulous trip. People have told me, “you know, he will never remember any of that.” To which I think, “I hope not, that means I get to take him for the first time AGAIN!” I can say, though, that he remembers so far. He will still tell us occasionally that we need to go to the Magic Kingdom today. And I will also say that doing Disney with a toddler is a lot of fun. It’s different than without - planning for lunch, dinner, and naps is key - but I’m definitely glad we went. It could be that David’s inherent awesomeness made the trip better than it would be with a normal kid, but I have no way to judge that. All I can say is that with an awesome 2 year old, Disney World is still awesome.

More pictures can be found here.

Short cardiology update...

Since August, our cardiologist in town has been talking about surgery #3 being scheduled some time around the beginning of the year, at age 2 1/2 or so.  He'd been trying to get in touch with Texas Children's Hospital to nail all of that down, but basically all of our scheduling has been expecting the surgery around that time.

Well, I just got a call from them.  They finally got in touch with TCH.  You may recall that we've been confused in the past about timing of surgery #3, because the in-town docs always talked in terms of 2 1/2 while TCH always talked in terms of 4 or 5.  Well apparently there was a reason for the confusion.  TCH wants to do the surgery between 3 1/2 and 4 years old.  So all of our planning has been for naught.  The easiest way to make God laugh is to make a plan.  

So, no surgery this year.  Looking more like spring of 2014.  I guess God figured that y'all needed another year to pray for him, as you've probably been slacking.

I'm a big kid now!

I will make a promise to the readers of this blog: this is the first and last potty post that you will see from me.

A few months ago, my dad decided that he wanted to take us (and my sister’s family) on a Disney cruise. So we got all of that booked and scheduled and began our normal Disney anticipation and drooling process. There were videos to watch - David made us watch this video multiple times a day - message boards to read, and since we’d never done a cruise of any kind, rules & “what to expect” sort of things. I was thinking, “oh, my kid has a heart condition, I probably need to let them know about that.” David was thinking “OMG LOOK AT ALL OF THOSE POOLS AND WATER.” As we were perusing the details of the ship, looking at all of the pools & water play areas, we noticed a small problem: children are only allowed in the pools - any pools - if they are potty trained. Apparently there is some sort of ancient international maritime law that only allows potty trained children into pools aboard ships. That’s what Disney’s excuse is, anyway. With a child who loves playing in the water and who will almost certainly melt down constantly if he is not allowed to play in all of that available H20, we had a predicament. The obvious solution to which was, of course, potty training him.

So some time in the beginning of August, Christy decided that it was time to take the plunge. He had “shown interest” (whatever that means - but it’s what all of the potty training experts say that you have to look for) for a while, and this was as good of a time as any. Ordinarily, I don’t think we’d have done it so early, but sometimes you gotta do what you gotta do.

After reading some blogs on how to effectively get your kid to pee in the toilet, Christy chose the 3-day “potty training boot-camp” method. Essentially, the kid goes around naked for 3 days. If they start to pee, you stop them and bring them to a toilet. And then after 3 days, they are supposed to have it figured out. Sounded pretty fanciful to me, but I figured the worst case would be that Christy would have to deal with 3 days of David peeing all over the place, then we would try something that would have a chance of success. Christy, on the other hand, figured that she’d bring him to her mom’s house for 3 days and leave him outside naked.

3 days later, I was proved wrong and he was potty trained. I think it really only took him about a day to figure out what was going on, and the extra 2 were just for reinforcement. By the time day 4 rolled around, he was wearing disney themed big-boy underwear and telling us “gotta poop gotta pooop!” when he needed to go. IMO it’s a little more of pain in the butt, because now bathrooming is on his schedule instead of changing him being on mine. And travelling is not as easy, because he does have to make bathroom stops more often than Christy or I do. But all in all, it’s pretty cool to have a 2 year old not in diapers anymore. Cheaper too.

Happy Birthday #2!

Two years old. Tempus fugit and all that. For last year’s birthday post, my sister complained that I made her cry at work. I’ll try to not do that this year. Truthfully, it’s been a great year. No hospitals, only normal doctor visits all with good reports, and watching my baby turn into a full fledged toddler. From a crying kid who can’t even walk to a running kid who is trying to figure out how to jump, is learning how to turn the thoughts in his head into coherent sequences of words, and who knows how to unwrap a present. The only bad part is that I have to miss it for 40 hours a week.

I won’t re-hash the past year too much - I try to keep it all covered in the blog posts throughout the year. Looking back, it feels like it was a pretty uneventful year, but I guess everything is relative. David has certainly grown a lot. Physically, he’s still sticking to his 5% weight growth curve. I think he just officially outgrew his 18 month clothes, which makes me sad. He’s developed opinions on things, has learned “no” (although I’m not sure he always uses it correctly), and is learning letters, numbers, and colors. He is a HUGE fan of Curious George and Elmo, although in a one-on-one I think George would win. I think David identifies with George having to get across messages without using words. He’s definitely learned sounds like “uh-huh” and “ooooooooh” from that show. We’re going to Disney World later this year, so we’ve been trying to show him Disney movies so that he knows the characters when we get there. He’s always liked Lightning McQueen, but we think he needs a broader exposure.

Medically, everything seems to still be going swimmingly. We had a cardiologist appointment earlier in the week, and he was quite pleased with everything. (Quick refresher on cardiac circulation: normal people is body->right atrium->tricuspid valve->right ventricle->pulmonary valve->pulmonary artery->lungs->left atrium->mitral valve->left ventricle->aortic valve->body. David’s circulation is body->half to pulmonary artery, half to surgically combined left+right atrium. The PA half goes->lungs->surgically combined left+right atrium->tricuspid valve->right ventricle->pulmonary valve->body. The L+R Atrium side goes tricuspid valve->right ventricle->pulmonary valve->body. And yes, some of the blood doesn’t go through the lungs, which is why he doesn’t have 100% oxygen saturation all the time like most people. The third surgery will remove that feedback part and 100% of the blood will go straight to the PA.) David has developed some “collaterals”, which I think are some small blood vessels that form between the aorta and the pulmonary artery, which ultimately serves to recycle more blood through the lungs, and keeps his oxygen saturations at 90%ish. All of which means that David won’t be forced into surgery #3 because of low oxygen saturations. My impression is that he can kinda just go along until he’s as big as they want him to be, then they’ll do the pre-surgery cath, plug all of the collaterals, then do surgery a couple of days later. The cardiologist said that he suspects that will happen sometime in the next 6 months, but he is going to get in touch with TCH and find out what their schedule is on these. Beyond that, he said that David’s tricuspid leakage is minimal and unchanged from previous visits, that the ventricle is pumping well, and everything is basically as good as can be expected. I imagine next week’s pediatric appointment will be much the same - everything looks great, here’s your 2 year immunization, have a good day.

Looking forward, we have 2 days of birthday festivities planned. Today began with David opening his 64 episodes + 2 full length movies of Curious George, after which he told us he wanted more presents. We told him we didn’t have any more, but that there were more at grandmere’s (Christy’s mom) house. He ran to the back door and said “let’s go!”. So this morning, they will be making cheesecakes for tomorrow’s family bday party. Then this afternoon after David’s nap, we will be having sushi, then this evening we will be doing Boutin’s & live cajun music with Pippi (my mom). Tomorrow a little after lunch will be the birthday shindig with David’s cousin, aunts, uncles, grandparents, and one great-grandma. After that we will all collapse and sleep until Monday morning.

So here’s to one more year. 2 years ago at this time (10:30 AM CST), Christy was on Pitocin and David was stubbornly not moving, dad was nervous & excited to meet the boy that he’d already bonded with in-utero, and mom was hungry and tired. Last year at this time, that little boy was trying to figure out how to walk. Next year at this time, we will be done with cardiac surgeries, hopefully forever. And he will still be teaching me things that I didn’t know that I didn’t know.

To the beach!

Yes, I'm getting really bad about this. I actually had to go back and look at the post before this to see when it was, and then figure out what we'd done since then. My first thought is always, "well nothing, just regular life". Kinda like when I get home from work and Christy asks me what happened that day. I generally don't remember stuff that happens day-to-day, much less over the course of 3 months. Fortunately, Christy is better than I am at this stuff, so she just gave me a list of all the stuff we've done since we last spoke...

To the beach!

This one, I actually did remember. Going on vacation is momentous enough that it tends to stick in my mind. Some friends of ours were attending a wedding in Destin, FL, and at the last minute found out that the set of grandparents who were supposed to join them to watch the kids would be unable to go. So, on Thursday I got an email asking if we wanted to stay in the extra room in their condo on the beach. Um, yes? On Friday, we left. It was pretty awesome. The weather was beautiful, even when it rained. It was early May, so it wasn't too hot yet. And it also happened to be a wedding involving my sister's husband's family, which means that we got to hang out with them, his awesome family, and David's cousins for 4 days. We did let David play in the ocean too much on the first day and he got a little blue-ish, but he was fine once he warmed back up. The rest of the time he and mom (and all the in-law family) spent loving the sand and the surf, while dad (me) stayed in the condo listening to the waves and catching up on his reading. Fun times.

The rest of the stuff from the last 3 months involves staying in town and me still having to go to work every day, which in my mind makes it just regular, uninteresting life. But after Christy listed off a few things, I realized that there were at least pictures of things, so there must be actual events behind those pictures.

Mom's company had their annual crawfish boil in late April, which we all enjoyed. There were several kids there for him to play with. David loves other kids, so he had a great time with them and with the sidewalk chalk that someone bought for the kids to play with. A few weeks later, Christy's brother boiled crabs at her mom's house for mother's day. I'm not sure that David knew what to think of the crabs, but he did like the hotdogs that were boiled with them.

A couple weeks later David assisted us in crushing the competition in the Louisiana Republican Caucus, where Ron Paul candidates won 75% of the available delegate slots to the state convention. I think I'm going to get him a shirt that says "Don't blame me, I voted for Ron Paul". David is pretty politically savvy, I'm always impressed by his understanding of the constitution and the importance of freedom.

Then, a couple of weeks ago, grandpa (my dad) came to visit for a weekend. It's funny, David is always unsure of him at first, but warms up when he realizes that Grandpa will take him outside. Or give him food. So we spent lots of time with him, and with G-Gma (my grandma) who is moving to Texas.

And finally, this weekend, Christy's step-sister came to town with her husband and 3 kids, so David got to meet them for the first time. Like I said before, he loves other kids, so he is enjoying the time being spent with them.

So I guess we've been keeping busy, and David has been having lots of fun, causing lots of trouble, and generally just being awesome. Right now, he's eating ice cream and watching Finding Nemo with mom. Life is pretty grand.

21 Months, and All is Well!

It’s funny how, when a kid is born, you measure time and age in days. Then it’s weeks. Then months. Then there’s this kinda odd period between 18 and 24 months when you’re not really ready to let go of your baby being a baby and you still measure your kid’s age in months, but nobody knows what the hell you’re talking about when they ask how old he is, and you say “21 months”. I’m sure people internally roll their eyes and wonder why I don’t just say “a year and a half”. But since we do cardiac check-ups every 3 months right now, I have an excuse. I figure I can stick with month-measuring until he’s 2. Then it will just be measuring by years. Ah, how the time flies.

So in the past 2 weeks, we’ve seen both the cardiologist and the pediatrician for quarterly checkups, and both have been quite happy. David remains on his 5% growth curve, seemingly to the pleased astonishment of both doctors. With the way he eats, I suspect he would already be obese if he didn’t have a heart condition. Christy literally has to keep a buffet of food out for him all day so that he can graze. Otherwise, he asks for food every 15 minutes or so. He has also recently discovered chocolate, for which I suspect he has a genetic predisposition (maternal) to addiction. We try to keep it rationed, but we have leveraged the love of chocolate into an increase in milk intake. He never really did like regular whole milk (pediatrician has said 8-16 oz per day, he might have been drinking 8-16 oz per week), but he will drink the heck out of some chocolate milk. Whatever works.

Aside from growth, oxygen saturations remain in the 90% range. The cardiologist said that sometimes a post-Glenn kid’s natural system will form some extra blood vessels in the heart that will keep saturations high. Then, in the cath that they have to do right before the Fontan (third surgery), they will plug all of the extra blood vessels, saturations will drop to like 70%, they’ll do the surgery and then he’ll be at 100% after that. Blood pressure is still good, both in absolute terms (just good pressure numbers) and leg pressure relative to arm pressure terms (if there’s a wide variance between the two, it means something might be wrong, probably in the aorta - for David they were exactly the same). All in all, they seem to be pleased. The cardiologist asked us if David was starting to tire easily, to which Christy responded, “no, he pretty much acts like he’s always had too much sugar.” So I guess that’s a good thing.

On the non-medical front, he’s still getting into everything that’s within his reach. He has learned how to climb on to chairs, and he does it at every opportunity. There are a few things that he knows to not touch, but otherwise, he figures if he can get to it then it’s fair game. He is learning letters, numbers (knows numbers 1 thru 5, probably 10 -15 random letters), and LOTS of words (just learned “M&M” a few minutes ago, is demanding one right now.) He still loves water. He likes to play in the sprinkler, kiddie pool,bath, hose spray, standing water from rainstorms, pretty much any pools of water that he comes across. He has developed a love of all things Elmo and Curious George. He wakes up daily demanding to watch Curious George, and is not happy on weekends when we have to inform him that George only come on on weekdays. He also loves outside. Any time he sees keys, he asks for them, then toddles over to the back door to try and figure out how to unlock it and go outside. Or, he will bring our shoes to us, and once we have them on, he points to the back door. As if to say, “Ok dad, you’re ready to go outside now, what are we waiting on?” He’s still incredibly wiggly and incredibly energetic. I think he gets that from his mother.

Since the last update, we’ve pretty much stayed in Baton Rouge, enjoying ourselves around town. Both Christy and I have had birthdays, but nothing major in the way of celebrations. Easter has come and gone (many eggs were found - Grandmere had been practicing by putting baby marshmallows inside of the plastic eggs, so david was confused when he did his first non-grandmere egg hunt and the eggs did not have marshmallows inside), we did a set of photos with a friend of ours who is a photographer, but mostly have just taken it easy. TCH still hasn’t contacted us to go back, so we’re not contacting them either. We are kinda missing Houston though, and definitely have to go back to see our friends, their kids, and the second iteration of the Terra Cotta Soldiers at the Museum of Natural Science. So we’ll have to negotiate with our friends as to when would be a good time to visit for a long weekend or something.

Life continues to roll by, and we’re trying to enjoy as much of it as we can. So far, I can’t complain. Until next time...

18 Month Cardiology Report

So yes, 2 blogs in under a week. Aren’t you excited?

Actually, this one is delinquent too. We saw the cardiologist a little over 2 weeks ago for David’s 18 month checkup, but I didn’t want to post this before I posted the one for Christmas, and I was being lazy about posting that one. Don’t worry though, on the day when we learn that he has been miraculously healed, you will all be informed before midnight.

In truth, there continues to be not much to report. Which is good. David’s growth path still appears to be tracking right along the 5% curve with no material deviations. It’s actually funny to see David next to other kids his age. One of Christy’s friends has a boy who is a couple months younger than David, and he’s at least 3” taller and noticeably heavier. The doctors have always told us to expect that, but it’s just strange to have the difference be THAT pronounced. Anyway, the doctor said everything looked and sounded good.

We asked him whether he expected the next surgery to be closer to 3 years old or 5 years old - he said much closer to 3 than to 5. We also asked him if there’s any possible reason that the TCH people would want to hospitalize him when he goes back there for his 1-year-post-glenn checkup. He said definitely not (TCH people, I’m looking at you - we’re not staying this time). They actually have not contacted us yet about going back, and I don’t plan on rocking the boat until they do. Dr. Brumund said it was actually a little odd for them to want to see him before we all start getting ready for surgery #3, so I figure we will be ok without them. If we haven’t heard from them by spring, we will probably just take a weekend and go hang out with our friends in Houston.

This visit also featured David’s semi-annual echo-cardiogram. Everything still looks beautiful there as well. David’s aorta is growing “beautifully”, his tricuspid valve (between the remaining ventricle and the right atrium) is still holding up really well, and the pressure drop across the place where the reconstructed aorta meets the natural one is basically negligible. All of which means that David is still doing really well.

Otherwise, we’re still having a blast, and David is still growing and getting smarter and more fun every day. He’s learning to talk a little bit, and he’s getting really good at communicating what he wants even when he doesn’t know what the words are. The other day he wanted some goldfish (the little cheesy cracker things), so he opened one of his books to a picture of a fish, pointed to it emphatically, then went over and pointed at the pantry. I kinda worry that his linguistic skills might be a little behind due to his inventiveness with non-verbal communication, but I guess that can’t be all bad. He still loves outside, loves other kids and people (don’t know where he got that - it wasn’t from me), and has started to love having books read to him. He also eats like a pig. Christy has taken to just leaving food within his reach all the time so that he can have an all-day buffet. I need to get rich soon, cause if he gets any bigger my food bill is going to put me in the poor house.

So that’s about it. I’ll try to be more regular about these things and to remember to let the world know about interesting things when David does them. But frankly, I’m having too much fun to stop and write when I can just sit back and enjoy the ride.

Yes, we do in fact eat straight peanut butter with a spoon.

Christmas!

Christmas less than a month past, and here I am writing David’s next blog post! Yay me!

As one might imagine, the Christmas season is busy and eventful, and this year wasn’t much different. It was, however, David’s first year to really notice what’s going on. He’s a pretty social kid, so he LOVES being at gathering where he can make himself the center of attention. Now that I think about it, that was probably his favorite thing about Christmas - all of the people who doted on him for a month straight.

So anyway, we spent lots of time having Christmas at various places with various people:

First up was the Patin Christmas party at mom’s house with that side of my family. They are always hard to nail down and corral into one location at one time, so every year mom makes them come to her house a couple weeks before Christmas so that she can at least see everyone once. As would become a recurring theme, David was loved by all and David acquired toys. At this one, nobody was supposed to get him anything, but alas, such a demand fell on deaf ears. The standout present from this gathering was the toy Cars keys that he got with the car noise making keychain. He likes car noises, he definitely takes his boy-dom seriously.

For the next couple of days after that party, my dad was in town from Colorado. So David spent a lot of time hanging with Grandpa. Various Google baby clothes were procured along with a sweet bean bag chair that later came in the mail. Good times were had by all.

Next, 2 days before Christmas (if I recall correctly), was Christmas with Christy’s brother and sister-in-law who came to town for an afternoon from Vacherie. Among the items of import gained at this small gathering was David’s new John Deere steering wheel thingy. Since it is both a steering wheel and makes noise, he loves it. I don’t think we’ve been allowed to put that one in the rotation of living room toys yet, because he demands to have it out all the time.

Christmas day lunch brought us to Christy’s mom’s house for presents and food, and David was not disappointed with the gifts received. At this stop, he got what might very well be his favorite toy-based gift of the year - a fisher-price gear thingy. It is pretty cool, and I very much appreciate the accommodation of David’s inherent nerd character in giving him an engineering toy. This child has no chance.

After lunch, we went home for a nap, then it was off to my mom’s house for Christmas evening coffee, dessert, and more presenting with David. His primary acquisition at mom’s house was a David-sized chair with his name embroidered. The kids of the family that we stay with in Houston have these, and David loved them last time we were there, so we kinda figured he’d like one for himself. We have not been surprised at his enjoyment. He climbs on it, watches his baby can read videos from it, and uses it as a stepping stool to get on to the couch. Plus, it’s red. When you’re 18 months old, everything red is awesome.

Lastly was Christmas with my paternal grandma, aunt, and uncle. Christy made dinner (best meal of Christmas, btw) which we ate and then had dessert and more presents. David returned home with a tricycle from great-grandma. Which he loves. Luckily he gets most of his tricycling done with mom during the day. It was also my first experience putting together a toy for David. It was surprisingly not bad, hopefully future endeavors will be just as easy.

So David’s first “real” Christmas was a success. In the end we managed to have minimal incursions of excessive toys and lots of David attention. Which, of course, is really the most important thing.

Note on downloading pictures from the albums...

It came to my attention this morning, that with the integration of Google+ and Picasa, anyone not signed up for Google+ cannot download full size pictures from the permalinks on the side.  So, for anyone who wants to download pictures, you have 2 options:


1.  Sign up for Google+.
2.  When you go to the permalinks, right click on the link that you want, and select the option to copy the URL to the clipboard (in chrome it's "Copy Link Address", in Firefox it's "Copy Link Location", and in Internet Explorer it's "Copy Shortcut").  Then, go to the address bar at the top of the browser, delete whatever is there and paste that link into the address bar (either Ctrl-V or right click and select "Paste").  Immediately after that address, type "?noredirect=1", except without the quotes.  Now hit return or click go, and you should be brought to the old Picasa view of the album.  From Picasa, you should be able to download full size pictures.


This is all an apparent attempt by Google to lock people into using Google+ for everything, which is pretty crappy in my opinion.  I guess they've gotten rid of that whole "Don't be evil" thing.