Slick and Sleeting Saturday

Apologies for not updating sooner.  I thought I had managed to update the blog from my iPhone from the hospital yesterday, but apparently that update is floating around somewhere in cyberspace. 

Although yesterday was a long and full day at CHOP, we didn't get nearly as much accomplished as was originally planned.  A series of poor coordination between departments, emergencies popping up, and long delays in various departments meant that, despite being at CHOP for about 7 hours, we really only managed to have  Lilly pre-screened for anaesthesia and undergo her MRI.  Not that those are minor things, mind you, but it was only half of what we were planning on taking care of on Friday.  So the consult with Dr. Campbell--whom we ran into in a hallway and got to at least say hello--and Lilly's final pre-op X-rays have been rescheduled for Monday.  There was some question in the morning as to whether they would proceed with her MRI due to her lingering cough, but the anaesthesia nurse practictioner gave her a green light after listening to her lungs and pronouncing them clear. 

The MRI department was running way behind, so much of our day was spent in the waiting room, entertaining Lilly who was not permitted to eat after 10pm or drink anything after 9am.  She wasn't taken back for her MRI until close to 1pm, so we were all hungry and thirsty by then.  She did well, however, despite her obvious anxiety about the anesthesia ("I no wanna' go night night") and the MRI.  The scan too about 90 minutes, and then we spent about 45 minutes in recovery as she slowly woke up and shook off the grogginess.

A brisk walk through the nippy winter air from CHOP back to the Ronald McDonald (RMcDH) house felt good to Tom and me after sitting in the hospital all day.

We get Lilly rehydrated and fed some ramen noodles at the RMcDH while we waited for Grammy and Pop Pop to arrive and bring us back up to their house in New Jersey for the weekend.  They braved Philly rush hour trafficin Uncle Jer Jer and AUntie Em's van to get us, and we were thankful for its DVD player for the return drive north last night.

So, here we are, safely in New Jersey, hanging out with Grammy, Pop Pop, Auntie Em, Uncle Jer Jer, and cousins Peter and Naomi for the weekend.  The ground is covered with about 18" of ice-slicked snow and it has been sleeting all morning.  If the roads are clear enough, we may venture to a children's symphony this afternoon, and have dinner at Aunt Judi and Uncle Doug's house tonight.  For Lilly, who is having a great time playing with her cousins and all their toys, it is a little weird to be here without Anna and Jared (actually, it's weird for Tom and me, too!).

Thanks for reading and for your prayers!

Safely in Philly with Lilly

It has been quite a day--travel days always are--but Lilly and I are safely in Philly, hanging out in the playroom of the Ronald McDonald House after a lovely Chinese New Year's dinner provided by volunteers here. I am so grateful for the RMcDH! Tom is still en route as I type, after his flight out of Atlanta was cancelled. Thankfully, he is able to make it in late tonight.

Tomorrow will be an early and full morning, and Lilly starts fasting as of 11pm tonight. Tomorrow begins with a consult in anesthesia, followed by a consult with Dr. Campbell, and then an MRI under general anesthesia. The caveat is Lilly's nasty lingering cough...they may opt to postpone the MRI if the are concerned about her cough and breathing. We shall see in the morning.

I have to mention that we have the most wonderful friends! Lilly has been showered with love, travel toys, snacks, cuddly plush toys, crayons, and so many other thoughtful and sweet tokens of love. We are truly blessed.


Meanwhile, Nana is caring for Anna whose tummy continues to ail her...hoping that both physically and emotionally she is feeling perky again soon. I suspect that, despite our efforts to keep life as normal as possible, she is anxious.

Nana managed to troubleshoot several tv and computer issues on her own today--GO NANA! That will be an even bigger challenge than illnesses I suspect.

Jared is rolling along just fine, happy as longas he still gets to see his friends and someone feeds him.

Thanks for all the prayers being offered for Lilly! And thanks for reading.

Jared appears

Ready or not...

Ready or not, it's almost time to go. Nana's crash course in Cantilina Chaos is almost complete and she's ready to go solo (keeping her fingers crossed that the computers and TV operate properly for her without Tom nearby. Computers fear Tom; all others they mock.) Too bad Anna is still throwing up... Praying for restful and restorative sleep for all.

Nana has Arrived

Well, the excitement is beginning.  Despite freezing rain and sleet in Pittsburgh this morning, my mom made it down today with no problems (she got her workout making her quick connection in Charlotte).  We spent some time reviewing my obsessive compulsive 6 pages thorough outline of the big kids' schedules for the week (after I had typed them up and saw our weekly schedule in black and white I realized that we are, indeed, insane.  Each and every week, simple insanity) and had tutorials on how to turn on the TV (we only have, at last count, 6 or so different remotes?), log onto the computer, and use our fancy dancy coffeemaker.  We talked about which big kid would walk and feed the dog when, and it was agreed that Jared will NOT be climbing trees while Mom and Dad are away.  At LIlly's request, Nana ("only Nana, not you, MOm) tucked in Anna and Lilly (both sleeping in LIlly's room for now) for bed tonight. 

Praying that Lilly has a better night than she has had recently--4 nights straight of fevers and violent coughing have made for some poor sleeping for her and Tom and me.  On top of that, Anna came home from school today with tummy issues, so poor Nana has multiple germs to combat while she's here.  Prayers for good health all around are welcomed!

Tomorrow I will finish the packing and a few errands, and Nana will continue her crash course in Cantilina Chaos.

Thursday we are Philadelphia bound.

Preparations and Prayer Requests

I have some catching up to do on the blog--Jared's birthday, a Father-Daughter Ball that Tom took Anna to, some swim meets, and some fun photos.  But for now, let me catch you up on the happenings this week...

Lilly’s “BIG” surgery is scheduled for next Tuesday, 8 February. In preparation for that, she and I will be flying to Philadelphia on Thursday morning of this week, joined by Tom later that evening, for some pre-op consults and MRI under general anesthesia on Friday the 4th. We hope to spend the weekend in New Jersey with Tom’s family before driving back down to Philly on Monday the 7th. My mom is flying in from Pittsburgh tomorrow (the 1st) to stay with Jared and Anna and hopefully keep life as normal as possible for them while we’re gone.

Our return date is uncertain—it all depends on how Lilly does with her surgery and recovery. Tom is likely to come home sooner to get back to the many demands at work and Lilly and I will take our time—staying with his folks in New Jersey if that seems beneficial—until she seems ready to travel home. I hope to be home by Friday, 18 January, but this date is very squishy.

As we look ahead at what this surgery means for Lilly, we are SO VERY grateful to God for the chance to see Dr. Campbell at Children’s Hospital of Philadelphia (CHOP)—he is THE spine guy for kids like Lilly with congenital scoliosis. We are grateful that the technology and know-how exists to perform this surgery that will protect her life and health as she grows. In a nutshell (more details to come as we consult with Dr. Campbell on Friday), they plan to separate the fused ribs and corresponding fused vertebra that are the cause of her curvature. Once they are separated, it will free her spine up to become straight. They will then insert titanium rods—one ribcage to pelvis, and one vertebra-vertebra—to open her chest cavity and straighten her spine. These rods are expandable and will be lengthened every 6-9 months during her many growing years ahead to allow her to grow even straighter over time.

We are also appreciate of family—last time Pop Pop, this time Nana—for traveling such a distance to take care of Jared and Anna! Also for the many friends who have offered to help in any way they can.

We are most of all very appreciative of the prayers that I know are already being offered up for Lilly. Please continue to pray this week:

• For Lilly’s recovery from a nasty cold—fevers, bad cough, several rough nights of little sleep and lots of coughing and crying.

• For protection over her health as the surgery date approaches.

• For safe travels for each of us—my mom tomorrow, and Tom, Lilly and I Thursday. As well as our driving to and from New Jersey.

• For wisdom for Dr. Campbell as he reviews her upcoming MRIs and all her other radiology studies and determines precisely how he plans to conduct the surgery with least risk and most benefit to Lilly.

• For God to guide Dr. Campbell’s hands. Also for the rest of the surgical team—Dr. Nance (general surgeon) and Dr. Mayer (pulmonologist) and nurses and technicians.

For God’s peace that passes understanding to guard our hearts and minds in Christ Jesus as we surrender this amazing child to this surgery.

• For Lilly’s lungs post op—the left lung will, for the first time ever, have space to expand to its normal size. The risk following the surgery is that it would fill with fluids so she will be in ICU immediately post op to closely monitor.

• For Tom and me to have good communication and selfless attitudes with one another and with Lilly.

• For Tom and me and the medical staff to have discernment to know how to best manage Lilly’s pain post op.

• For Jared and Anna as they continue with “normal life” with Nana here—that it would be a time of good bonding with Nana, that they would all stay healthy, that the stress of parents being gone and sister having surgery would not be detrimental to them in any way.

• For us to be rooted firmly in the Word throughout these weeks of travel, disruption of routines, and stress.

• That we would have wisdom and the right words to help Lilly understand what she is facing and to offer her the peace of Christ.

The Latest in Language Lessons

It has been a good long time since I have posted any language-related stories here.  But I have to share the latest trend I am seeing in Lilly. 

We are still speaking lots of Chinese at home, but her predominant language is most definitely English.

For the most part, she is very understandable, even to total strangers.  But there are still times when her speech is slightly unclear, even to me.  She used to get extremely frustrated really quickly when I had trouble understanding her.  I knew I had about 3 chances to say "I'm sorry, sweetie, what did you say?  Can you say it again?" before she would either shut down or throw a fit.  Not pretty.  So over time I leared new strategies of helping her express herself like "Can you show me?" "Can you tell me what it looks like?" "Can you tell me in Chinese?" "WHere did we see/do/hear it?" and a host of other questions that help her find a way to make it clear to me what she is talking about.  She is a smart cookie and we almost never have fits anymore.  Praise the Lord.

Well, here is our latest twist on communication barriers, now that she is learning all her letters, wanting to know how to spell things, and attemtpting to write names and words.  When I have trouble understanding her, she will simply pause what she was trying to say, and "spell it."  Except she can't spell.  Tonight, for example, while she was in the bathtub, it went like this:

Lilly:  "Mom, please you bring lotta' Paw Paw Kits" to the bath?
Me: "What did you say?  Paw Paw Kits?"
Lilly: "No!  You know, Paaaw PAAAAW Kits!  WAY lot.  THIS MUCH" (stretching her arms way wide)
Me: (knowing I'm on strike two now...) "Hmmm....what are paw paw kits?  Can you tell me more..."
Lilly, interrupting: "Mom.  Listen.  T - U - V.  You know, paw paw kits."

Me: (laughing at her attempt at spelling what she was requesting, and relieved that my mind had finally interpreted her request (not in any way due to the spelling) "OH!  Polly Pockets!  Sure.  I'll bring you lots."

Lilly: "why you laughing?  No laugh at me.  WAY LOTS mom, ok?"

That girl simply cracks me up. 

The Ball is Beginning to Roll Again

Stay tuned...we are beginning to get some of our appointment dates for LIlly's upcoming pre-op tests/procedures/consults leading up to her 8 February surgery.  Flights are being booked, Nana is gearing up, and what has for several months seemed so very far away is nearly here. 


More details to come... 

In the meantime, you can enjoy this...the second verse of the Chinese version of "Head, SHoulders, Knees, and Toes" as performed by Anna and Lilly (Jared quickly ducked away when he realized he was on film).  But he knows how to be silly and have fun with his sisters...