VADER vs. VACTERL

I am a Star Wars fan in remission. I was a teenager when the first Star Wars film hit the theaters and with two younger brothers, spent many hours watching the super heroes of space duke it out. Eventually, I started to enjoy this baby-sitting gig. Now, as a single mama with a house full of girls-- and not a single Princess Leia among them--well, when we do get to the movies it's usually The No Bummer Summer types or, most recently, Home. But I digress. . .

Today, Lilah had three doctor appointments at Children's Hospital. We started out in great spirits:

But it's never hard to get a smile out of her.


Up next, here she is stepping into a "fun" looking x-ray machine:

Which revealed some unexpected news.

Afterwards, we had a little time for breakfast at McD's:

 And to stare at this ball and maze contraption.

Then we sat in the exam room waiting for the surgeon and entertained ourselves taking selfies:

 One of us didn't get a lot of sleep last night...yep, it was me.

 And one of us is taking everything in stride...yes, my babe. She is a trooper.

 But both of us know how to have a little fun.

At the end of the day, with three more diagnosis/discoveries, it has become crystal clear to me that my babe does indeed have that syndrome impacting the midline--some call it VADER syndrome, some call it VACTERL. I knew she had it before today, what with four diagnosis on the midline already (more than 3 and you're a shoe-in), but today I was given information on new discoveries and information not shared with me in March (how could the doctor forget to tell me Lilah's kidneys are not the same size?). And I am sad, because my girl, she deserves a break, right. (Yes, I am tempted to throw a pity party, but Lilah would be the last one to attend and the only way she'd arrive is kicking and screaming--which is a reflection of her indomitable spirit and the way I am raising her--to see herself as mighty). And the truth is, everything that could go right, is going right. Her open heart surgery was nothing short of a miracle. And all the damage to her organs for having gone 3 years without a repair, healed itself within a year of surgery. She was detethered long before any permnant damage could occur. Her kidney reflux--stage 2, people--healed itself!

So, what are the unknowns we face?
1. She has been diagnosed with spina bifidia occulta, but it is pretty much a static condition and anything that could go south with it has already happened--tehthered cord and now this prominent bone (size of a BB) near her tail bone. Many people are born with SBO and never even know it.
2. Her spine is curved. It's only an 8% curvature. The ortho specialist believes this is due to her open heart surgery. Normal range is up to 15% and no human being has a straight spine--we're all a little curved.
3. And the kidney size disparity, a lot of people are born with this and never even know it.

So we follow up, every year unless something indicates further action is needed.

Now the fistula--that big surgery is scheduled for June 23rd. The surgeon believes it will be difficult at minimum, complicated enough he has requested a specialist in an anatomical area close to the fistula be present in the operating room because he suspects involvement. And the recovery? 6-8 weeks.  Oh, and he wanted me to know that it will be the most painful surgery she could have. Yeah. Open heart surgery, spinal surgery pale in comparison.

So, my friends from the adoption community, what is it like to raise a child with VADER/VACTERL--nothing short of miraculous. She truly makes my heart sing. I am a better person for having and holding her. Each of my children have taught me more about Grace and faith than I ever thought was possible. They have taken me so deep into love that there has to be another word for it. But in keeping it real--yes, tonight I will find a moment to myself, lock the bathroom door and shed a few tears for my sweet girl, because in 6 weeks I will hold her hand and walk her into the most intense pain she has ever known so that she can live a life full of possibility. And tomorrow morning she will wake up and wrestle the sun into the sky and laugh that deep belly laugh because, after all, she holds the world in her hands (and my heart, too).

(More on that VADER/VACTERL thing later. . )

Weekend Fun

Yesterday, we went to the mall. I am not a fan of shopping unless it involves midnight hours and a mouse that clicks as opposed to squeaks:) Anyway, we ate at our favorite Chinese food restaurant, went to the movies (HOME) and got a little shopping done. JC Penny is one of the few stores that sells slim pants/shorts/capris with an adjustable waist (Ava is petite--that's the only word we're allowed to use;)). We also received a gift certificate for Bare Minerals (Thanks Tamara!). It was lipsticks for everyone. Lilah asked me several times if she could have the woman apply her color choice--there were a lot of ladies in on a Saturday and having makeovers, which fascinated her. Maddie and Ava weren't interested in doing this, which surprised me as all my girls are into make-up and makeovers but they were far too busy checking out all the eye color and lip color and making their purchase selections. Anyway, a few photos of this first:

I let her get a very sheer pink that's really more like a tinted chap stick. She loves it. Maddie and Ava chose brighter colors but the shades go so well with their skin tones and coloring. I'm pleased with their choices.

Also this weekend--I bought a Fitbit for myself.

I resisted at first. But I love it. It manages my goal for me (lose 22 lbs.), keeping track of my exercise, calorie intake, makes adjustments to how much I can eat according to my calorie intake, exercise output, and my goal, logs my water intake (a huge challenge for me as I don't like drinking water but the fact that I have to log it and get to watch my glasses fill up toward success--I'm a very visual person--works for me). It also keeps track of how many steps I take daily and that also adjusts how many calories I can eat. It also calls me a "champ" when I reach my activity level, footsteps (10,000) and cheers me on with a "hooray! when I meet but don't exceed my daily calories. It tells me how many more calories I can have throughout the day. This is day 2 of wearing it:)

Weekly Round-Up

I have been sick with some kind of sinus-coughing-virus. For 10 days. I went to work everyday anyway, because Lilah will have surgery in June and she has pre-op appointments next week and I will have to miss work for those. And I brought the girls to the Y for their gymnastic and hip-hop classes and to the pool, because it's been so hot here--95 degrees right now. Otherwise, my mom has held down the fort. Thank you!

So what else has been going on?

We have entered the teen years in this house--not officially yet, as Maddie won't be 13 until July--but I felt "Christened" into the role as the mom of a teen on Wednesday when I arrived at Maddie's school to pick her up and noticed that she had adjusted the hem of her skirt. When I bought it for her, it was calf length. When I picked her up she had lifted the waist so high, the hem hit mid-thigh. Yeah. And she was wearing heels, too. Sigh. Standing next to her was her good friend whose skirt was also at half-mast. Also heels. When I spoke to Maddie about her attire she was like, this is the length all of us wear our skirts. Maybe I'm a little too conservative? Probably, but we're going to have to come to a compromise. Today, I picked her up and she was wearing flip flops and a skirt that hit her knees. Totally appropriate. I'm sure, though, that the testing has only begun.


A very tragic accident at our high school yesterday. One child killed another in critical condition and another responsible for it. The news vans--seven of them when I left for work at 6:00 this morning and six of them when I came home this afternoon--are piled up around the school. We are all wearing blue today.

Signed the youngest two girls up for swim classes--they start next week. Ava wants to swim without floaties by the time we go to Disneyland in August. I really think she'll get there.

Got Lilah to bed at 8:15 last night! A big accomplishment for us. She needs the sleep and if she's up too late she's on sensory overload and becomes a little aggressive and totally disconnects to where it's hard to reach her. So I'm trying to get her to bed by 8, read or play go-fish and then lights out. The problem is that she usually fights going to sleep (but sleeps so well once she is out). Swimming is helping, though, and I'm hoping to use these long months of summer to reset her internal sleep clock!

Pictures, I know. But I don't have any to share today--you know, cause I've been sick. We have lots going on this weekend, though, so stay tuned:)

One More Time?

I'm thinking about it. Praying over it. I feel He's calling me back to China and to a little girl in particular. She is beautiful, of course. Already 3 years old. But her file is skimpy and her medical need a little scary--yes, that from a Mama who adopted a babe with a very serious and complex heart condition in addition to three other needs....But I'm a single Mama with 3 kids already and while I know God does not bargain, I keep trying to call Him to the table. I have a list of musts and worry these could get in the way of something glorious. Still, I keep telling myself I'm not moving forward until I can. Until at least a few of what I consider needs are met. Until, at least, I feel Him telling me, Go. Go now.

In the meantime, it wouldn't hurt to ask for an update from the orphanage, for a more complete medical and developmental profile. . .right?

Sundays. . .And We Know How To have Fun

Small Town Rodeo Parade

Maddie rode on the float for her school.

She and a friend went together. It was hot and long, but they were smiling.

The rodeo queen.

A couple of clowns.

And something not so funny, but I was happy to see it in the parade.

Spring Break, Take 2

How did we spend our staycation?

Our new purchase. Much fancier than anything I've ever owned. The girls are loving it.

Those are blankets they've made and are now tacking. Lilah made one too, but I was busy watching little fingers and couldn't grab my camera.

We've also been gardening--a container garden because nothing grows in this desert soil.

And so far so good. We've been at it about a month now and have roses and veggies going.

There are 40+ blossoms on this rose bush!

And peer closely--that's a tomato blooming on Lilah's plant.

But now it's back to school and homework.

Really. But. . .

You can have a few more minutes on your tablet before we read, "A Hat for Silly Cat."