Sports Quiz

While Scarlett's Daddy and Paw watched a Spurs playoff game this weekend, I asked Scarlett the following questions:

Me:  Scarlett, who do you like better -- the Spurs or the Mavs?

Scarlett:  Mavs.  [much to the dismay of her father and grandfather]

Me:  Who do you like better -- the Cowboys or the Redskins?

Scarlett:  Redskins.  [much to the dismay of her father and both grandfathers]

Me:  Who do you like better -- the Longhorns or the Aggies?

Scarlett:  Aggies.  [much to the dismay of too many people to list ... there was a collective gasp in the room over this one; ok, so maybe I was the only one who audibly gasped, but really, Scarlett?!??]

Chris:  Wait a minute ... she's answering with whichever team you name second.  Try mixing it up.

Me:  Good point.  Scarlett, who do you like better -- the Aggies or the Longhorns?

Scarlett:  Aggies.

HOUSTON, WE HAVE A PROBLEM.

Cousin Jordan

Scarlett and Max are excited to announce the arrival of their cousin Jordan, who was born on April 2nd.  As the old saying goes, she's so cute you just want to eat her up.  Max took it literally.
  

Maybe we do need to start him on solid food sooner rather than later ...

Welcome, Baby Jordan!

Max is Five Months Old! (April 17, 2012)

Our big boy is five months old and still growing like a weed.  His big accomplishments this month include blowing raspberries and "talking" up a storm (he's moved on from just cooing to making lots of different sounds with various inflections).  He's got an amazing grip, which is problematic when what is in that amazing grip is a fistful of your hair.  He can sit up with assistance, so a few weeks ago we pulled out Scarlett's old excersaucer and jumperoo (which are technically Chandler's and soon to be baby Alysse's).  Max has been having lots of fun standing and bouncing in these contraptions and pulling, twirling, and chewing on the various items attached to them.

Max still smiles all the time and is almost always in a great mood.  (The rare exception goes something like this: "Hey, how's it going?  Good?  Glad to hear it!  Me?  I'm great, FAN-TAS-TIC.  Wait.  No I'm not.  Never mind.  I'M HUNGRY and/or TIRED!!!  Oh, the humanity!"  Except of course he can't talk.  But if he could, I imagine this is how a conversation with Max would go.).  Although there are countless things that make him smile, one thing our sweet baby boy does not like one bit is loud noises.  The vacuum cleaner is apparently a big mean monster set out to destroy our house, the power tools being used for the construction going on next door may very well be weapons of mass destruction, and BB's legendary sneezes are downright terrifying (although Chris and probably many others would agree with Max on that last one).  

We haven't started him on solids yet, although he watches us like a hawk when we eat and drink -- clearly, he's getting the idea and he likes what he sees.  We'll give him his first taste of something delicious (well, as delicious as a pureed something can be) in a few weeks when he turns the ripe old age of 6 months. 

I continue to maintain that he's the cutest and happiest baby I've ever seen.  (And I'm being completely unbiased in saying that.  Not buying the unbiased bit?  Well, he's still undeniably cute no matter if it is his own Momma/Mommy/Mom saying so.)

And here is the adorable Mr. Max in all of his five-month-old glory.

 "Hello, ladies.  How you doin'?"
 

Big boy.

 Sweet face.

Rockin' the fedora at Chicken Scratch with Papa Tig.

"Why am I wearing this awesome hat?  Because that's how I roll."

Happy baby.

20 Questions

Scarlett peppered everyone who worked at Our Children's House with tons of questions. And the other patients. And their parents. Just about anyone and everyone who crossed her path, actually. The conversations usually went something like this:

Scarlett: Hey, what's your name?

OCH employee: Magdalena/Danae/Dr. Beard/Antonia, etc.

Scarlett: What are you doing?

OCH employee: I'm here to take your temperature/bring your lunch/check your fluids log/sweep your floor, etc.

Scarlett: What's that?

OCH employee: That's a thermometer/blood pressure cuff/rubber glove/pen/broom, etc.

Scarlett: I want to hold it. What's your name?

OCH employee: Magdalena/Danae/Dr. Beard/Antonia, etc.

Scarlett: I'm watching Lion King.

OCH employee: That's nice. I like Lion King, too.

Scarlett: Oh, no! What's that monkey doing? Put that baby lion down, monkey!! What's your name?

Me: Scarlett, that's Magdalena/Danae/Dr. Beard/Antonia, etc. You've asked her/his name three times now.

Scarlett [after zoning out to a few more minutes of Lion King]: Hey, what's your name?

Notable Quotables

Me: Scarlett, do you want a cupcake?

Scarlett: Is it a mini-cupcake?

Me: Yes, it's a mini-cupcake. Do you know what mini means? It means very, very small.

Scarlett: And Mickey means very, very big. I want a Mickey cupcake.

Me [laughing]: Scarlett, you're funny.

Scarlett: I am NOT funny. I'm Scarlett.

*****

Scarlett [dramatically, after walking into her room at OCH where she was promised Max would be waiting]: Wait a minute!! Where's baby brother? Oh my goodness!

*****

Scarlett [on a regular basis when getting ready to leave a room]: Just ooooooooonnnne more thing before I go. Tickle Grandma/Paw/Mommy/(or whoever else happens to be available for tickling)! [this is one she borrowed from Paw, although thankfully he limits his tickling to just Scarlett]

*****

Scarlett [with annoyance, after suffering through an apparently exceptionally distracting conversation Chris and I were having in her presence]: How am I supposed to read with all this noise?!

*****

Chris: Scarlett, did Mommy give you a bath?

Scarlett: Nope. She just disappeared. [For the record, although Papa Tig gave Scarlett her bath that night, I was all of ten feet away holding Max. Scarlett clearly has a flare for the dramatic, slightly-exaggerated story. I have NO idea where she gets that from ...]

She's home!!!

After 35 long days, Scarlett came home with us Saturday afternoon. She was really happy to be home. All of her toys were like new again -- "My kitchen! My bicycle! My helmet! My Minnie Mouse!" and on, and on, and on. She's been eating and drinking well, and we are slowly but surely trying to get into a routine of taking care of a toddler who has to drink more liquids than I think most adults drink, and simultaneously taking care of a baby who fortunately is about as easy going as they come. Here are a couple of photos from Scarlett's first full day back at home. Thank you as always for your good thoughts, kind words, and prayers for Scarlett and our family.

Checking out the fountain at our neighbors' house.


Walking with Daddy. (Note the cup in Chris's hand. No, it's not an adult beverage in one of his beloved "red cups." It's water for Scarlett. In order to get a her to drink at least 36 ounces of fluid every day, we pretty much have a cup in hand at all times.)



Scarlett loves to tickle baby brother. Baby brother loves to be tickled, so it's win-win.


Sweet Max rocking the hot pink stroller. When the sun hits the stroller just right, it makes his hair look pink too. But he's unfazed because he's cool like that.

Scarlett Update

Physically Scarlett is doing great, although she is still at Our Children's House. She's running (more of a fast walk, but she waves her hands around and proudly yells "I'm running!!"), climbing, playing, and getting stronger every day. Her speech is no longer slurred at all, and her vocabulary continues to blossom. (Last night she looked at Chris suspiciously and said, "I've got my eye on you, Daddy." The things that come out of her mouth keep us constantly entertained.)

We will have been at OCH three weeks Friday, and it is really starting to wear on all of us (except apparently Scarlett who informed me yesterday that she doesn't want to come home to play in her playroom and sleep in her crib because she lives at OCH now). Kind of funny on one hand, but sad on the other that she's been there so long she no longer misses home. Physically she could have gone home last week. The hold up is her eating and drinking. The condition she has that causes the rhabdomyolysis episodes can be triggered by not enough food or drink. Food will not be a problem, and she's almost up to eating as much as she does at home. Drinking, however, continues to be a challenge. She needs to ingest 36 ounces a day, which is a lot to get a toddler who's all too familiar with the word "no" to drink. At the end of each day the nurses give her the fluid she is still missing to reach her goal through the NG tube in her nose. If she's not meeting her fluid goals by mouth next week, she will likely come home with the tube in her nose. I am currently being trained on how to do that myself, although we have our fingers crossed that she'll start drinking enough to go home without the tube.

We received confirmation a few days ago that Scarlett does have the genetic condition that the geneticists in Houston suspected. Basically, one of her 25,000 genes has a "mistake" in the coding that causes her to have acute rhabdomyolysis episodes. The disorder is incredibly rare; only three children in the US have been diagnosed with it (Scarlett is the third), as well as only about three dozen people worldwide. It is surely more common than that, but since the affected gene was only mapped a few years ago it has only just now started to be diagnosed. The good news is that we know what it is and we know how to treat it when episodes occur. We are working with her doctors to come up with (1) a comprehensive treatment plan for if/when another episode happens; (2) what to do when a potential trigger occurs (for example, dehydration or lack of food due to a stomach bug, a fever, etc.) to avoid or minimize an episode; and (3) other general preventative measures like diet and drinking goals. I've already been in touch with two moms -- one here in the US and one in Australia -- who have children with the disorder, and they have been a huge help in sharing information, both medical and practical. Chris, Max, and I are all being tested next week, since the condition is almost certainly hereditary. We likely won't get the results back on that testing for 4-6 weeks.

Thanks as always to our family and friends for your support, good thoughts, and prayers. Hopefully I'll have an update soon telling you that Scarlett is home with us again.

Scarlett and "That Guy"

A few days ago, Scarlett wandered into the chapel at OCH and a statue caught her eye. The following conversations ensued over the next several days:

*****

Day 1:

Scarlett: Hey, who's that guy?

Chris: That's Jesus.

Scarlett: What's he got there?

Chris: A stick* and two sheep.

Scarlett: Oh. I'm going to play the piano now.

[*I have since informed Chris that it's called a staff. He noted that Scarlett is two and doesn't know what a staff is. I noted that he's 37 and apparently doesn't either.]

*****

Day 2:

Scarlett: I want to go see that guy.

Me: What guy?

Scarlett: Jesus.

Me [begrudgingly, because the chapel isn't exactly intended to be a playroom]: How about we go to the playground instead?

Scarlett: Nope. I want to see that guy.

Scarlett [after entering the chapel and asking to be picked up so she could check out "that guy"]: Oh no! Where are his shoes?

Me: He doesn't have any.

Scarlett: What if he goes outside?

Me: Ummm ... then he wears sandals.

Scarlett: Where are his sandals?

Me: Ummm ... I think he lost them.

Scarlett: I'll find them. [She then proceeded to scour the chapel for a good five minutes, looking under the pews, around the piano, etc., but no luck. Jesus's sandals remain at large.]

*****

Day 3:

Paw [upon realizing one of Scarlett's socks was missing]: Scarlett, where is your other sock?

Scarlett: That guy has it.

Paw: What guy?

Scarlett: That guy. He came in my room and took it.

So Scarlett is now apparently accusing Jesus of petty theft. But I guess I see her logic -- "that guy" is missing his sandals after all, and desperate times call for desperate measures.

"I did it!" ~ Easter 2012

On Easter Sunday 2011, 14 month-old Scarlett officially walked on her own for the very first time. Exactly one year later on Easter Sunday 2012, two year-old Scarlett walked on her own again after not having walked for three weeks after another bout of rhabdomyolysis that severely weakened her skeletal muscles (see a few posts below for more information).

Chris, Scarlett, Max, and I were out on the otherwise deserted playground at Our Children's House after lunch, despite the thunder and imminent rain storm, trying to get a few minutes of outside playtime in before Scarlett's nap. After crawling and then walking (assisted) up the stairs of the slide, Scarlett must have regained her confidence, because next thing we knew Sister was walking around the playground all by herself. What a joyous thing to see.



In addition to making great physical progress, Scarlett is doing better eating (although she still has a ways to go). The doctors have cut her tube feeds in half so that she'll be hungrier for actual food, which seems to be helping. We are hopeful that if she continues to progress at this rate, she will get discharged in the next 1-2 weeks (although there's no guarantee of that; she has to eat and drink enough on her own consistently for a few days before they can take her feeding tube out, and that needs to happen before she can come home). In the meantime, she'll be getting speech therapy (for eating), occupational therapy (for coordination), and physical therapy (for walking, climbing, etc.) each day and our fingers are crossed for discharge sometime the week of April 17.

Here are some Easter photos of Miss Scarlett and Mister Max.








Happy Easter, everyone!

Max is Four Months Old! (March 17, 2012)

Over the past month, Max has made an obvious change from newborn to baby, and his personality is really starting to shine through. And boy does it ever shine. Simply put, Max is adorable. Not only is he as cute as can be (except in the hair department; that could use some work, poor guy), he's also got the sweetest and happiest disposition. I can't go anywhere without strangers stopping to talk to him and tell me what a cutie he is. And I shamelessly agree with them while Max laughs, coos, and smiles adoringly at his many admirers. He's just a natural charmer.

Some of his tricks these days include holding his feet straight up in the air when he's in his car seat, holding onto his feet, grabbing and swatting at toys, rolling from belly to back, and gnawing on absolutely anything he can get his hands on. He can also scoot an impressive distance when he's on his belly. It's nowhere near crawling, but he sort of scrunches up and stretches out like an inch worm. Scarlett still adores her baby brother, and he loves to watch her and almost always tolerates her holding him.

He's a really big boy. When people hear he's four months old, they almost always respond the same way -- "wow, he's BIG!" I feel like he gets noticeably bigger just about every day. He's wearing 12 months clothes already, which actually makes me pretty sad. At just 4 months old, I can no longer shop for him in the baby section! At his belated 4 month appointment today with Dr. Curry, he weighed in at a whopping 17 lbs 12 oz (90th percentile), measured 27 inches long (greater than 98th percentile (meaning "off the charts")), and his head is 17 1/2 inches around (also greater than the 98th percentile). Dr. Curry noted that he's the length of an average 9 month old and the weight of an average 8 month old. This should serve him well some day on the football field on the debate team. Dr. Curry also noted how cute and smiley Max is, which I'm pretty sure coming from a doctor makes him certifiably adorable.

Max brings so much joy to our lives, and his amazing smile can brighten even the worst day (and we've had our fair share of bad days lately). We are so lucky to have him. Happy belated four month birthday to our sweet Max!

Handsome boy.



"What? Somebody's handsome? Who, me?"



You ever get the feeling that someone's watching you? Like maybe someone -- or something -- is lurking in the background looking over your shoulder, waiting for your next move? Yeah, me neither.



(In case it's not clear, that black blur in the background is ChaCha eying Max suspiciously. In reality, she's a huge Max fan, which is more than I can say for Winnie, who has chosen to completely ignore his existence.)

As Scarlett says, "Baby Brother, why you kicking, kicking, kicking?"



Smiley Max.


That sweet face just melts my heart.