Happy Birthday, and an even Happier Anniversary!

June 27 is the exact day, one year ago, that Rory went to the Rady Children's hospital emergency room because her tummy was very tight and distended, she was writhing and twisting in obvious pain, and she could not move her bowels to relieve the pressure building up inside her. She was twenty days old at the time. I thought it fitting to post the final update of this blog since this anniversary has passed.

If your first thought was "Rory is already a year old?", then thank a teacher, because your math skills have served you well. She's one year and twenty-three days old to be precise. What has happened since the last post of 4 months ago? Much. Much as happened since that time, my friends.

So while you may have assumed (fairly) that this blog was already finished based on the increasing lapse of time between posts, please allow me to close this story with a proper ending. Not a 'Chuck Noland at a cross-roads' ending, leaving more questions than answers about the fate of our intrepid hero. I'm talking about an ending that ties up all loose ends, leaves no questions, and knocks you out of your seat. I'm talking about a 'Bruce Willis is a ghost', 'Verbal Kint is Kaiser Soze' and 'Rosebud is a sled' quality ending here. Alright, maybe knocking you out of your seat is a bit ambitious.

Rory walks, she talks (goo-goo gaa-gaa, baby), she eats (solid foods), she poops (unassisted). Rory thrives. All without the apparent need for modern medicine, surgical support, herbal remedies, or shamanism to cure her ails. She's had her last appointments with her surgeon and GI docs, with instructions not to return. She has been incident free for longer than I can even remember, and our fears that she will relapse are all but gone. Any remaining concerns are more a memory of what could have been than a worry for her future. I can confidently report that Rory is healed. And other than that, there's not much more to say. We thank God for Rory's health and prosperity. We thank you for your thoughts and prayers. And we thank Rory for showing us that our family possesses a strength we did not know we had, nor ever thought we would need.

"Vote for Pedro and all your wildest dreams will come true!"

Rory and I spent the evening at home together while Mom and the other two kids were out and about. She lay in my arms, remarkably calm, while I waded through TV channels searching for something to catch my eye. There are a handful of movies that I will stop on, no matter how many times I've seen them, no matter what point they are at, and despite the fact that they might be readily available on Netflix or on DVD somewhere in the house. This evening it was Napoleon Dynamite, the quirky story about a weird high-schooler living in small-town Idaho, surrounded by an equally eccentric band of outcasts. Tonight, as I watched the final throes of this movie once again, I couldn't help but feel a parallel between the title character and my very own infant daughter.

Near the end of the movie [spoiler alert!], the kid lays it all on the line and puts his own shame aside to help a friend in need. After performing a dance that could easily rival Michael Jackson's Thriller video for cinematic and choreographic greatness, he runs off the stage, humiliated as the crowd sits motionless in shock and awe. After a moment of hesitation, the auditorium erupts into deafening applause, and the tempo of the movie immediately changes from one of conflict and challenge, to hope and optimism. From that moment on, everyone around Napoleon seems to attain the happiness that was somehow eluding their lives. I've seen this movie probably a dozen times or so. But when that audience burst into cheers, I was right there with them. My heart leapt, and I wanted to stand up and scream, "you did it!". And then I realized it was not Napoleon's defeat of adversity I wanted to exclaim, but Rory's.

It was only in that instant, caught off guard and alone with my baby girl, that I dared consider she just might be past all of this. It's been quite a while since the last post, I know. But there really hasn't been much to tell. The manometry study never happened, with CHOC doctors seeming to dismiss it's criticality and indicating they wanted to wait until she was at least a year before proceeding. Meanwhile, we continued to do what we do, which is to say, Christine continued to do what she does. Rory's had her ups and downs, sometimes having BM's several days in a row, and sometimes going several days without (that's bowel movements, for those of you with more refined sensibilities). We were instructed to apply the dilations as needed, but with less and less frequency, and to keep on track for those milestones typical of normal kids. Target milestones, like eating solid foods, may be exciting achievements for most parents, but they are deeply distressing for the parents of a baby who's bowels don't seem to work properly. We really had no idea how solids would pass through her.

But I can report that she is eating like a champ. And she's been passing it like a champ, too. I can't say for sure, but it's almost as if the solids navigate her system better than the liquid diet of a 0-6 month old. Either that, or her bowel has finally matured, her brain has finally started to communicate with her rectum, her physical mobility helps things move along properly, or the power of prayer is in the process of healing her. You take your pick, I have mine. And yes, I did say mobility. Rory began crawling just around Christmas time, now she pulls herself up on everything and stands on her own two feet for several seconds before realizing what she's doing and falling on her butt. There's another possibility for the skeptics out there! Perhaps the constant jarring of her rump each time she falls has loosened the muscle a bit. Whatever the corrective measure, we are thrilled with how she's coming along. Enough so, that I dare to think the worst could be behind her, that she may have beaten this thing. As always, only time will tell, but it remains on our side. Rory is fast approaching 9 months old and so far we've avoided return trips to the ER, Botox injections, ileostomies, and invasive corrective surgeries for things we're not even sure are the problem. Not too bad.

I voted for Pedro, and I think all my wildest dreams may be coming true.

The Shirt Doesn't Lie!

"How's Rory doing?" A common question I get often. The answer: Good. Rory's doing good. She continues to respond well to the dilations, and quite frequently does not require them. We await the manometry study from the Children's Hospital Orange County (you can call it CHOC, if you're in the know). 

It has been a big pain getting the referral required to go 'out of network' for this test. But CHOC is the only place in southern california to get this done for babies, so we have no choice. And while you might immediately jump to the conclusion that the insurance company is the hold up, that isn't necessarily the case here. The referral was supposed to come through the GI's office, and we're pretty sure at one time or another they 1) dropped it, 2) referred to the wrong hospital, and 3) ordered the wrong test.

But, with some help from the pediatric surgion, even calling CHOC and speaking to those folks himself, we've finally got a date for the initial consultation! Yes, initial consultation. You didn't think they were going to let us walk in off the street and get the procedure performed, did you? At least we've got our foot in the door now. Unfortunately, I doubt we'll make the schedule for the actual test being performed in this calendar year.

From the CHOC website:

Anorectal manometry
This test helps determine the strength of the muscles in the rectum and anus. These muscles normally tighten to hold in a bowel movement and relax when a bowel movement is passed. Anorectal manometry is helpful in evaluating anorectal malformations and Hirschsprung's disease, among other problems. A small tube is placed into the rectum, and the pressures inside the anus and rectum are measured.

An Ode to Insurance Companies

Well, well, well, what more can I tell?

Rory couldn't poop, so we were thrown through a loop.

And our little prize spent the summer with Rady.

They couldn't find a cause for her tiny bowel's pause,

But sent home a bill that would make most men shrill,

And now Aetna's price tag grows into a Lady.

A Halloween Tradition

Halloween 2003. Reese was just 13 months old. Christine and I had our limited Halloween supplies out of the closet, most of which consisted of a Mad Scientist cosutume I'd worn in college. Just for fun, we threw it onto Reese's head and snapped a few photos. This picture remains as one of my favorite photo's of my son's early years. The best part about the picture was how his 13-month old head almost completely filled out the adult wig.

Flash forward to Halloween 2004. We were now the proud parents of two - one toddler, and one 9-month old. Halloween box was out of the closet again, and Riley joined the 'Mad Scientist' club. Note how the 9-month-old's head almost fills the entire wig.

Halloween 2011. Seven more years have passed. The Mad Scientist wig, still clinging to life, continues to be a Halloween staple in our household. Our newest edition has some room to grow before filling out that wig, but she wasn't quite 5 months old yet, so it really isn't a fair comparison.   

The once proud Mad Scientist wig isn't doing so good these days. It's previously perky quaff is looking a little wilted and frayed. But it still makes us laugh when donned by a baby. I wonder if it will last until our first grandchild is born?

September was a Good Month for Rory

I know, its been more than three weeks since the last entry here. Summer is officially over. September has come and gone, and today marks the begining of October. School is in full force, and I'm back into the swing of things at work, up to my eyebrows in new and catchup work.

You may recall that when we left the hospital, we had the threat of an ileostomy hanging over Rory's head. The docs had pretty much told us that if Rory didn't respond to the treatment at home and ended up back in the hospital, they'd just go ahead and do an ileostomy. So there were many ups and downs those first few weeks, and each squirm, grunt, or fuss (typical behavior for any other baby) brought anguish and concern. I like to look at trends. I literally do, just about every single day. My career revolves around performance trends for water treatment systems. I recognize that you can not look at a single data point to assess a situation, you have to look at the trend of many data points. Christine was not comforted by my analogies of our daughter's health to a water treatment plant. I was not completely convinced either, because while Rory's overall trend looked good to me, I also knew she could crash in an instant.

But September turned out to be a good month for Rory. During the monthly visit to the pediatric surgeon, he reported that he was very pleased with Rory's progress and response to the dilations at home. So much so, that even if she landed back in the hospital, he would not do the ileostomy. They'll just decompress here, and send us home to keep doing what we're doing. I cannot tell you how much stress that relieved.

We also had a visit with the GI Doc. She was also pleased with how Rory is doing. So much so, that she said we could back off the liquid gold formula. She recommended a different formula. Not your standard off-the-shelf stuff yet, but another 'special' formula that's about half the cost of the previous formula. Its more like, liquid silver. We mix that with breast milk. And maybe that's the best part. I don't think I reported this previously, but we could not actually mix the liquid gold with breast milk. Rory would literally gag and spit it out when we tried that. To feed her half liquid gold and half breast milk, we were heating up two separate bottles for every feed - every three hours. Now we can use a single bottle. It's the little things...

Rory had an appointment with the physical therapist too! She was indeed a busy girl this month. Christine was too. And they said Rory looked pretty good. The mild stretching exercises, and holding her the opposite way when feeding, were doing the trick to correct her stiff neck syndrome. Now we're just working on ensuring she has a full range of motion. That means a lot of tummy time, and giving here things to look at, at specific positions so she cranes hear head many directions.

September was a good month for Rory. Let's see what October holds in store for her.

Through the Eyes of Babes

I know, that's not the exact saying, but its appropriate in this case. My son's first creative writing project is due tomorrow for his new school. He had to write a few paragraphs on what he did this summer. You remember that assignment, don't you? Here's the text from his story, aptly titled "My Summer":

"I spent most of my summer with my best friend Brody because my sister Rory was in the hospital. Brody and I did many fun things together. Some of the things we did were, went to the beach, we also visited the aquarium and zoo. My favorite thing we did together was go to Seaworld.

Sea world was so much fun! We saw a dolphin show, a clown show and the Shamu show. There were tide pools and I got to touch a starfish and feel the gross sticky skin of a sea cucumber. My favorite thing we did was to ride on Atlantis. The ride was awesome because it was scary and thats what made it fun. When it was time to leave, we got to see fireworks that the park does before they close. I had a great summer and the best part was when my sister came home from the hospital."

The second half of the project was to create diorama, collage, mobile, or some other means of illustrating the story. When Reese suggested that he wanted to do a mobile like those that Rory is so fond of, Dad joked we could even motorize it. Apparently at 9 years old, kids still think their parents can do anything. I guess I'm not ready to let go of that perception just yet, so check out the video to see how it turned out.

Video quality isn't so great, but those are pictures of all the fun things he did hanging off the mobile. And at the top are fireworks. It was a family collaboration to be sure.