Answers to Our Questions.

We had a great day -- a diagnosis and a treatment plan for Maria's choking! This post is very long, so please don't feel obligated...

Background: Last week we went to Iowa City to see the pediatric gastroenterologist at the Children's Hospital. The visit was very thorough and involved a couple of diagnostic procedures, but they could not do the surgical procedure they had hoped to do because of a steroid burst Maria did 4 weeks ago. The procedures they did accomplish revealed nothing out of the ordinary, so they started Maria on very high doses of acid blocker and told us to hang tight until the steroid would no longer skew biopsy results (4 more weeks). They hoped the acid blocker would reduce swelling in her esophagus and therefore help her symptoms. As he was leaving the room, the GI also mentioned in passing, "Oh, you should probably also see your neurosurgeon and ENT to rule out other problems while you wait for the surgery."

So, on Monday I called our ENT's office. (Every time I thought about contacting the neurosurgeon, a little voice in my head went, "lalalalalalalala we don't want to think about that...." Some of you might remember my stories about Dr. Pompous the World-Renowned Pediatric Neurosurgeon, and his extreme pomposity is in fact one of the reasons I didn't relish contacting him for an appointment. The bigger reason, though, was that we just didn't see any neuro symptoms. Besides the fact that she can't swallow, that is. And yes, I know we're not docs and don't possess an at-home MRI machine, but there you go!). Anyway, all the ENTs in the practice except for one were on vacation this week. They managed to squeeze us in today for a strobe and appointment afterwards, and I am so grateful.

The speech path did the procedure, and made it as easy as possible for Maria. She also took a lot of time with us, and we got to see Maria's cleft repair in a lot of detail, as well as some very cool mucus and other stuff. Maria was delighted even though she had a long, flexible tube up her nose and reaching all the way to her voicebox. She's quite a girl!

The ENT came in and watched the recording with us. We had been able to see it as it was being recorded during the procedure, but it was interesting to see it again with his narration. When the strobe got to the base of Maria's tongue and her voicebox, he said, "Whoa! Do you see this?" to the speech path. She nodded vigorously. And within moments, we had our diagnosis: The base of Maria's tongue and the area around her voicebox are severely swollen, which quite obviously would make it difficult to swallow and would cause frequent choking. The condition, called laryngopharyngeal reflux, is caused by refluxing the contents of one's stomach up into the voicebox area. She has a severe case, and without treatment it will just keep worsening, causing more and more problems with coughing, choking, and asthma symptoms.

Up until last year at this time, Maria was treated for reflux in an effort to keep her asthma under control. She took high doses of acid blockers, and the meds caused a host of other symptoms. Those symptoms required meds, too, and before we knew it our little girl was taking 11 or 12 different medications on a daily basis, and sometimes more depending on her condition at the time. In an effort to stop the medication reactions, finally her doctors hospitalized her and took her off all her meds but one. And she has felt really well, so we know it was the right decision. However, it turns out that the reflux spent the last year doing some significant damage.

This news about the reflux may sound like a set-back, and it is a serious issue; however, we are thrilled. Of all the suggestions we've heard from our pediatrician, GI, and ENT about what might be causing Maria to choke, the scariest options were that she had a small stroke or that she might need another cleft repair surgery. We know for sure now that there is no neurological explanation for what's going on, and the ENT told me definitively today that there is no need for any type of surgical intervention -- the cleft repair is intact and actually quite lovely (my words, not his!). The treatment for this condition is high doses of acid blockers, and coincidentally, that is the treatment the GI prescribed last week as a stop-gap measure. It will take at least two weeks for the severe swelling to decrease; it might take as long as three months for things to improve (we have twelve months' worth of damage to fix!). They prescribed a different acid blocker this time, at our request, and so far Maria has not experienced any of the troubling side effects she had while on prevacid. We're hopeful the trend will continue.

Thank you, everyone who made it this far! We appreciate your support very much.

Oh Henry.

One day many years ago, I grabbed my little girl's hand and instead of feeling chubby and plump in mine, it felt slim and graceful. And I had two thoughts: awwwww, my baby is no more! She's a little girl now. How adorable. My second thought was not a new one -- as unpleasant as it was, I had thought it before, and I would think it again: so tiny, the better to slip through my fingers and away. She's just so....undersized. Huh. I wonder if she's shedding ounces again? Need to go in for a weight check...

:::

Fast-forward to about a year ago. I grab Henry's hand to keep him from going somewhere he shouldn't, like straight into rushing traffic, and I feel a jolt in my stomach. His hand!

It's a square. A square! It went from chubby baby hand to square, dare-I-say-it, Manly Hand. Like overnight, this happened. And I have two thoughts: awwwww, my baby is no more! He's a little boy now. How adorable. My second thought is this: he is sturdy. He's a sturdy, man-handed boy who has a healthy, strong body. And relief is what I feel...

Until the feeling changes to disgust with myself for rampant gender stereotyping. The boy is strong and the girl is weak? For shame! I give myself a stern talking-to.

All the while I am marveling at the firm little square I hold in my hand...

:::

Confession time. I have continued to find relief in the squareness of that hand. My image of Henry is so different from my image of Maria -- she is elusive and mysterious, her brain and lungs irrevocably damaged -- she's been places I don't understand. Places of severe pain and suffering. She goes to those places still, and I stand beside her gurney in the ER pleading, "Honey? Honey? We're trying to help you, we're GOING to help you, the doctors are going to help you," hoping it's true. Her slim fingers slipping out of mine...hard to hold on to.

But Henry! So sturdy! That's how I think of him. Robust. Healthy because he had excellent medical care from the first moment, because he was able to breastfeed for three years, because he's seen specialists from birth. His hand fits solidly in mine as we walk along; he chatters incessently about being a police officer, a super hero, a fire fighter...he lists the people on his team of rescuers, and if there are no girls I remind him that girls can rescue, too. He adds a female friend or two from school. But never Maria. Have we created these roles for our children? The weak one, the strong one?

:::

When Brian called me from the GI's office last week and said Henry had lost 4 pounds in 8 days, I thought "no." I was at work and therefore trying to be poised and professional (not easy for me on my best day). If I had been anywhere else I would have said, "No. That's simply not true! Have them weigh him again. Did they use the scale by the GI office? Because that's the one they used last week. And was it Alma who weighed him? Because she's not very careful. Please have them weigh him again. That can't be right. Here, let me talk to Dr. PoopChute myself..." So maybe it's good I was at work, because I didn't say any of those things. And when I got home from work I took a good look at him and yes, of course he had lost four pounds. He had lost four pounds while I was working extra hours at the office, going on an overnight retreat, and participating in Dance Recital Weekend. Relying on how sturdy he is, and ignoring the truth.

Oh, the guilt. I had no idea parenthood would be so incredibly chock-full of guilt.

At This Time On This Day Eleven Years Ago...

I was lucky enough to be sleeping soundly through my contractions, well aware that our baby would be born the next day. My labor would be easy, delivery would be swift...I was right about all those things.

But I was so, SO very wrong about what it would be like to parent our girl.

I had no inkling of an idea, at this time on this day eleven years ago, that we would become parents to such a wise, gorgeous, hilarious, compassionate, and fragile girl. That parenting her would mean being more vulnerable, more terrified, than I had ever been at any of the scariest moments in my 29 years of life. That I would never cease to be surprised that this Girl had somehow come to live with us, to learn and grow with us, two nerdy and decidedly humdrum normal people. That we were responsible for the care and upkeep of this magical Girl stunned me then, and it stuns me now, eleven years later. As she dances and hugs and chatters and charms and writes and bikes and grins and swims and reads and laughs and loves her way through her life, through our lives, I am so very grateful to be here with her.

Happy Birthday, Pretty Baby.

Toe Touch.

Toe Touch.
Originally uploaded by snicketyone.

Lots of rehearsing lately for the dance recitals coming up next week.

Baseball Season.

Hey Sissy, I'm Supposed To Be Paying Attention To The Assistant Coach, But I Like Getting My Picture Taken Better.
Originally uploaded by nubbinland.

We're deep into Henry's baseball season, and it's (shhhhhh) hilarious. Baseball might not be Henry's best game, but he's having a heck of a good time!

P.S. "Mama, my mouth looks like a jigsaw puzzle with a lot of pieces missing!"

Grill.

May 16: Grill.
Originally uploaded by snicketyone.

After our grill caught on fire and burned up in a spectacular show of flame and melted black plastic last year, we were glum, chum. Then Mom bought us a replacement for our anniversary. Brian put it together tonight, and we celebrated with yummy grilled burgers.

End-Of-Year Shenanigans.

May 13: Maria and Her Teacher at Night of the Notables.
Originally uploaded by snicketyone.

After Tulip Time (which we survived, in spite of several obstacles in our paths), the rest of the school year is a downhill slide. While participating in various celebrations and events, we're simultaneously gearing up for baseball season (first game Monday) and dance recital (Maria is in five dances this year, including a Father-Daughter dance -- I can't wait!).

Last night we were treated to a wonderful performance by Maria and her classmates at an event called "Night of the Notables." Maria chose to present Jane Goodall. The whole evening was a pleasure -- amazing group of children!