VEPTR Expansion #3 and Thanksgiving Wrap Up

Lilly successfully underwent her third VEPTR expansion surgery on Tuesday the 20th this week.  She and I drove to Philly from VA on Sunday afternoon--stopping briefly to visit with Justin, Lita, Joshuan, Abby, Delaney, and Elly on our way north--checked into the Sheraton University City Hotel that evening ( no rooom at the Ronald McDonald House, unfortunately).

Monday was our usual pre-op day with a clinic visit with Dr. Campbell, X-rays, lab work, and a screening visit at the anesthesia resource center.  Different this time was an additional clinic visit with Dr. Carrigan to follow up on LIlly's weakness and lack of flexibility in her right hand that we discovered over the summer. Dr. Carrigan is a hand surgeon who works with Dr. Campbell and he had recommended the EMG test Lilly undewent in October.  Dr. Carrigan was happy with the treatment Lilly has been receiving for her hand in her OT visits, and will followup in 6-12 months to make sure things are still looking good.  Overall, the day went smoothly, and Lilly and I were done in time for a late lunch in the cafeteria and an afternoon at the Please Touch Museum, an awesome children's museum just a few miles from CHOP.

We indulged in Chinese food for dinner and did homework in our hotel room before proceeding with our usual pre-op bath and wip down with the special antimicrobial wipes thay provide for us each surgery.    Our show time for Tuesday wasn't until 1pm, so we made plans to spend the morning doing school work, sipping apple juice, watching movies on the iPad while Mommy exercised in the fitness room, sipping more apple juice, and then walking to downtown Philly to a Barnes and Noble bookstore to see Nana's new book, Agenda 21, on the shelves for the first time.  We bought a copy for Dr. Campbell as well.  How exciting!  Then we walked back to the University/Hospital district of town just in time to get our car from the hotel and get ourselves to Surgery Reception at CHOP.

I was excited to meet another VEPTR mommy in the pre op area--we had "met" on the VEPTR family Facebook page and her daughter has been at CHOP for about 10 days due to an ongoing infection.

Our wait was smooth and pretty speedy, and by 3:15 Lilly and I were headed back to the OR where I was again allowed to "suit up"and hold her while she breathed the gas from the ask to help her drift off to la la land.  Lilly comments contstantly that the surgery seems so very fast to her because she ggoes to sleep and as soon as she wakes up, it's over!  Not quite as fast for mama, but this time actually was pretty speedy.

I got to finish reading Agenda 21 in the waiting room--a wonderful distraction from the business of waiting--and Tom and my other 3 kids arrived just as I was finishing up the book.

Lilly woke up ravenous and spunky.  She devoured everyone else's dinner since the hospital didn't uet show her in the system and we couldn't order her a dinner tray.  She was happy to see her siblings and was feeling pretty good--other than being itchy from the morphine--thanks to good pain meds.

After Tom and the other kids departed to finish their drive north to Grammy's house, our night was spotty--hospitals simply aren't a place to get good sleep.  She was itchy and had tummy aches.  The next morning we dealt with nausea and pain and continued hives and itchiness.  She wanted to go for walks and play in the play room, but her nausea made both of those things short-lived.   We were thankful for the zofran the resident ordered for her, and by 3:00pm, we were discharged and ready to do battle with Thanksgiving traffic to get to Grammy';s house.

The drive, usually a little over an hour, was closer to 2 hours, but we made it.

So good to be in a place where I could rest and decompress.  LIlly quickly settled into playing with Isabel and her cousins Peter and Naomi, and it felt good to be with family.

Our Thanksgiving was wonderful--as always lots of delicious food and many many people with whom to share it.

Yesterday, we enjoyed a beautiful day to get out an dhike at a local park called "ringing rocks" where the rocks make beautiful tones when struck with a hammer.  We had more good food with a few of Tom's siblings' families who weren't present for Thanksgiving dinner.

Later today, we'll pack up and head home.  I know Lilly and I are both ready to get into our own space and our own beds.

I am ever so thankful for the wonderful care that LIlly receives at CHOp, for the love and care of family, and for the grace of God that washes me afresh each day.

Lord, Deliver me from my Irritability

This morning, the sound of my 6-year-old virtual twin girls giggling in the back of the car on our way to our weekly occupational therapy (OT) appointment was a welcome reminder of the joy of family, the blessing of two little girls from the same heritage getting to grow up as best friends and sisters forever.

Our morning had gotten off to a rough start and my mood had been sour--initially irritated by childish behavior--and then deflated as I steeped in the guilt of allowing my irritation to turn to harsh words.

You see, we have been spending two hours each week doing OT--Lilly for some issues with lack of flexibility and weakness in her right hand, Isabel for her deficits in gross motor and visual motor coordination.  This chunk of time in our week has been a sort of mixed blessing to me. 

• The services the girls have received is top notch and the results--especially for Isabel--have been astounding.  She is making wonderful progress in so many areas.  Their occupational therapist is wonderful, thorough, caring, and knowledgable. 
• But (as you might have gleaned from my previous post), time has been my most treasured commodity in recent months and these many Thursday mornings spent sitting on a hard chair in the OT waiting room has felt like an unjust imposition on my selfish heart.  Each Thursday I find myself feeling annoyed that I don't have a morning to just stay home, catch up on housework, and drink an extra cup of coffee.

So, this morning as I drove, I was wallowing in mommy guilt for having raised my voice at Isabel as we got ready to get out the door.  She had come to me, as she often does, to ask whether she had gotten her shoes onto the right feet.  This is something she almost never got right when she first came home from China.  These days, nearly 9 months later, she gets it right about 75-80 percent of the time. 

When she doesn't get it right, however, she dissolves into a pitiful floppy puddle of whines and moans on the floor.  The fact that the shoes are on the wrong feet might baffle me, but it doesn't upset me.  It's the whining and stomping and sudden physical limpness that does. 

And this morning, I got annoyed.  My voice was not pleasant.  OK, I admit it.  I sounded REALLY mean.  Poor Isabel just froze, then cried harder.  Lilly, on her way down the stairs to the front door, stopped, stunned, to quietly peer through the banister at me.

Just moments before this incident, the girls and I had been sitting together over breakfast reading about Moses receiving the ten commandments. We had looked at the passage in Galatians 3 that discusses our captivity under the law and the hopelessness without Christ. Our little devotional had encouraged us to confess our sins--and I had led out in prayer as an example to the girls by asking God's forgiveness for those times that I get impatient or irritated with my children and speak words that are not kind.

And then this.  I immediately sought Isabel's forgiveness for speaking harshly. She granted it freely through her snotty tears. 

I am in need of better strategies to guide Isabel to successful independent dressing. 

I am in even greater need of better strategies to help me with mommy irritability.

Above all, I am in desperate need of grace.  Both showing it, and receiving it.  And the transforming power of the Holy Spirit in my heart.

 Moments after Isabel had granted forgiveness and we had finished getting the shoes on the right feet, Lilly felt compelled to chime in "but Mom, you just prayed about that. And you still yelled."

Yes, my sweet child, I did.

Praise the Lord that He gives grace feely and shows what it looks like so clearly through His laying down of His life.  He doesn't yell harshly at me when I mess up. 

May I give it as freely, laying down my frequently unrealistic and selfish expectations more often.  And may I receive it more freely when I stumble.

Above all, may my children learn more from how I recover from my mistakes than they would from any attempt at perfection.