Sister Love

Happy Family Day!

Three years! It was a trip that at times moved at light speed and at others dragged by on the back of a tortoise. I had to leave my two girls with Nana and take the trip alone--that was the hardest part of this adoption trip. I had travel whittled down to 10 days, which meant hours after I landed in Guangzhou I was in the Civil Affairs office sneaking peeks of my baby girl who sat on a bench in a side room with no real clue about what was to come. I posted about our first moments here http://crazeenluv.blogspot.com/2012/05/got-her.html

Three years ago, my baby girl was a feisty toddler. And that spunk has gotten her through open heart surgery, spinal surgery, and in less than a month what I hope will be a final surgery.

She is strong, healthy and happy.

She is a daughter, sister, granddaughter and niece. She is a friend and a scholar. She is so many wonderful things. But at heart, she is a warrior.

Weekly Round-Up

Lilah had her last class of gymnastics for a while. She is a very active girl and really loves her gymnastic classes. And they're very good for her sensory-wise as well. But with surgery coming up in less than a month I've decided to keep her out of the gym and in the pool as we continue her swim lessons until we're ready to leave for the hospital. It's been very "May gray" around here, with the sun peeking through every once in a while, but all the girls love to swim and we get to the Y almost daily through the summer and even into the end of September--this will be very hard on Lilah when the older two get to go during her recovery (6-8 weeks). We're trying to come up with a plan that will make my girl a little happier about her restricted activity.

Also this week, Maddie has a friend over to help her celebrate her birthday -- several weeks early. I let the Maddie and Lilah have a "birthday" party before the end of the school year as they have July birthdays and it's a lot harder to get friends together in the summer. I took them to the movies last night--Tomorrowland" and they're having a sleepover. (I woke up at 4:23 this morning and they were still up! Had to insist it was definitely bedtime now:)).

We got Sea World passes and this will be a fun thing to do this summer--Lilah will be able to participate even if she has to spend some time in the stroller. We had to cancel any possibility of a vacation--our week at Mammoth and 5 days at Disneyland (moved DL to the week of Thanksgiving--the girls love pool/resort time at the Disneyland Hotel so I'm hoping the Christmas decorations will be an equalizer). I also ordered the math and language arts common core curriculum that I will use to teach Ava and Lilah this summer. Still working on finding the best plan of study for Maddie this summer. This will be the first summer that we sit down 4-5 days a week for 90 minutes and prep for the coming school year. The girls will also read daily (or close to it) as part of a summer incentive program.

The Arts-Maddie and Ava will take a class in throwing pottery this summer. They'll learn to work the wheel, fire and glaze. We're also looking into starting cello (Ava) and piano (Lilah).

And in an attempt to relax this summer, the kids will not be participating in any sports. Recreational swimming, swim lessons and going to the gym is it. The crazy pace of this last year (4 nights a week and Saturday morning!) has us rethinking how we spend our time.

Friday Night

 And my big girl is off to the MORP (Prom spelled backwards). Isn't she lovely! It's a semi-casual affair for 7th and 8th graders.

Maddie with a friend from school. They drove in together (friend's father did the honors) and I get to pick them up. There are no "dates" for this dance--I get a few more years to prepare myself for that!

May Gray

But the girls are troopers. We started swim lessons early this year and the weather hasn't been cooperative.

 So I bundle them up as soon as they get out. . .

and the smiles return.

Revitalizing

 We're painting around here, and someone is really happy about it.

 She really is. In fact, she asked to help--all the girls did--and each girl took a turn and the trim and doors look so nice now! Next, we'll paint the walls in the hall and living room. We've narrowed it down to these:

And the winner is. . .the lighter, brighter red that looks a little pinkish. It's called Strawberry Wine and will look very nice with our leather couch and accessories.

An Important Decision (bark) to Make and an Update on Our Garden

We're looking to add to our family. Yes, a puppy. My first choice--

an English Bull Dog-Shar-pei mix. I have a few votes in my favor. An equal contender (though it doesn't have my vote)--

A Pomeranian. My second runner up--

A mini Australian Shepherd. Also on our list of possibilities--

a Shiba Inu. However--

There's some definite cuteness going on here.
We want a dog on the smaller side. One that is good with children. One that will alert us of intruders or fire, etc.

Now, our garden:

 Maddie's Roma tomato plant.

 Lilah's cherry tomato plant.

 Ava's red bell pepper plant.

 My yellow bell pepper plant.

Maddie's science fair experiment--one with pesticides one without.

We have had such success with our garden (flowers are flourishing, too!) that I am considering investing in a green house so we can plant all year long. We have 65 tomatoes and 28 peppers growing strong.

Fit Bit Update

How did I do the first week? I worked out much more than usual and started strong with healthy eating but we ate out 4 times last week and it took a toll on my weight loss plans. I gained a 1/2 pound. I reached my water goal and step goal every day and I have a lot more energy this week. I swam laps yesterday and could have gone another 20 minutes or so (did 30 minutes), but the girls were done with their swim lessons and I didn't want to end up over-doing it and start avoiding exercise. Tonight, my work out includes cardio (50 minutes) and weight machines (25 mins) while Ava is downstairs in gymnastics class. Wednesday is lap swim again and 45 mins in the gym while Lilah is in gymnastics class. Friday is gym work out again (while Maddie is in gymnastics class), and Thursday and Saturday is a jog/walk for 45 minutes (walk for a minute, jog for a minute for 45 minutes--I love this work out best because it boosts my metabolism and cuts me a tiny break between jogging but still shows up as full intensity on my fit bit:)). This week Sunday would be my day off but we'll be at Sea World and that's a lot of walking.

One feature I really love on the Fit Bit is the sleep tracker. I am surprised I get as much sleep as I'm getting!

All smiles on the way into gymnastics tonight.

Happy Mother's Day!

My crew were mostly unresponsive when I asked for photo ops, so I culled the best from the lot:

Yesterday, we all had pedicures and a few manicures thrown in there, too. Today we went out for frozen yogurt while we waited 90 minutes for our table to be ready at Olive Garden. We spent most of today working on school projects that are due this week. In a few minutes, we will all have cheesecake and then it's bedtime (well, a little past bedtime, as usual:)). It was another awesome Mother's Day!

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:)