Merry Christmas from CHOP!

The past week has been a blessed and busy blur. Cooking, cleaning, present wrapping, baking, laundry, and packing for a road trip and a hospital stay. We enjoyed a wonderful time with my family on the 24-26th (Christmas Eve at our house, then Christmas Day after church at Justin and Lita's house, then a surprise birthday party for Nana on the 26th on our way north). We then braved the traffic and headed to Tom's folks in New Jersey, where we left Jared and Anna with cousins, Aunts, Uncles, and grandparents; Tom, Lilly, and I departed New Jersey at 5am on the 27th for a 6:30 show time in surgery reception at CHOP.

She was in the OR for about 80-90 minutes total; then transferred to the PICU for overnight observation. While she was in surgery, Tom and I busied ourselves in the waiting area pulling together a digital photo frame filled with photos of many of Dr. Campbells' current and former patients that I had gathered via a new VEPTR facebook page to give him as a thank you from all of us. It was a wonderful distraction while she was in surgery, and we finished our project just before Dr. Campbell emerged to let us know all had gone well in the OR.

He removed the upper portion of her remaining left side VEPTR, as well as the rib-rib VEPTR on that side, in the hopes that any remaining bacteria that might have been harbored there would be removed. Surgery went well, and we were soon able to go to the PICU to be with her. She spent most of the afternoon and evening in a groggy semi-conscious daze, awakanening more fully in the evening (as I was feeling ready to crash). Her pain was managed well with morphine at first, and by late night we were able to manage the pain with oxycodone and tylenol by mouth. She got lots of IV fluids overnight as she was quite dehydrated, and by 4am-given all the sleep the day prior and the need to empty her bladder--she was pretty wide awake and hungry. After some snacks and early morning TV, she dozed back off for about an hour or so until the lab showed up for blood draw and the various residents began their rounds.

As for me, I did not sleep much at all Tuesday night, between construction noise outside our window and the inevitable bells and alarms throughout the night.

Today, Lilly continued to make great strides in her recovery---no more IV fluids or meds, no more need for pulse ox monitoring, and she even walked from our room to the play room on our floor to play for a bit. Much of the day--other than a late afternoon nap--she was alert and active, with minimal pain always managed by oral pain meds. Tonight before bed, she developed a very itchy rash under her dressings and the mesh tube that holds her dressings in place, so we added some benadryl to the mix. Hoping she's not developing an allergy to the antibiotic.

We moved downstairs to a regular floor, with a wonderful private room. No pulse ox monitors or any other type of monitor is attached to her, so I am hopeful for better sleep tonight. We are also hopeful we could be discharged as early as late tomorrow...almost certainly by Friday sometime. The infectious disease team that is offering their expertise to Dr. C feels that she doesn't need any further antibiotics upon discharge; ultimately it will be Dr. C's decision how long or whether she continues any antibiotics for the next few days or weeks.


While the timing of surgery over Christmas break eliminates any missed school and makes care for the older two a lot easier, it is a little stinky for Lilly to have to leave behind newly unwrapped gifts and toys so you can spend your Christmas vacation in a hospital room. Jared and Anna, for their part, have been having a great time in NJ...shopping with Grammy, playing with cousins Peter and Naomi, dining/movies with cousin Tanya and her new husband Jeff, and today spending the day in New York City with Uncle Rob, Aunt Wen, and cousins Keiran and Kaylla. Thank the Lord for wonderful supportive family. Grammy and Pop Pop came to spend a few hours at CHOP with us today as well, which Lilly enjoyed.

What Lilly is most looking forward to, however, is the coming weekend at Grammy and Pop Pop's,when the Cantilina clan will celebvrate Christmas a week late and exchange gifts and eat great food. SHe mentioned it to her nurses today, and one of them asked if he could come get some presents too! It has been fun to see some of our nurses from previous hospitalizations (Tom keeps asking if we can get frequent flyer miles)...

We are graeteful for wonderful care here, and are thankful for all of you reading and praying with us.

Cantilina Christmas Letter 2011

Merry Christmas 2011 and Happy 2012!  

Photo Update

Lots has been happening here between Thanksgiving and now.  I have been bad at regular updates here, so let me catch you up a little:

 A chance to catch up with dear friend, Susan House Schrock, for dinner and some shopping...so cool that we live a drivable distance from one another for the first time in many many years!

A visit from our dear friend Gracie--and a night out at the Cheesecake Factory and Jared's football game.

 I thoroughly enjoyed the fall colors this year--it has been so many years since we've lived somewhere with four seasons!  (though it doesn't quite feel like winter here yet)...

Tad nearly pulls my arm off when he sees geese or ducks swimming in our neighborhood ponds.  He wants so badly to jump in, swim to them, and retrieve them.

 Thanksgiving held a "friendship feast" at Lilly's school...

Thanksgiving dinner at Justin and Lita's house....mmmmmmm....turkey...

 And a visit to Mount Vernon with Justin and Lita's family and Nana, Pap Pap, and Uncle Doug on "Black Friday".

ooopps...back to November briefly...Lilly enjoyed having cousins Delaney and Elianna spend the night on Thanksgiving evening...while Jared and Anna stayed with Joshua and Abby

And, in December....

 

 Tom was selected for Colonel (one year "below the zone" or one year early), and will pin on his new rank in 2013.

 We visited the National Harbor with Tom's sister Judi, her husband Doug, and our niece Brittany to experience "Christmas on the Potomac"

We cound teh long-lost "Awakening" sculpture...

We went to see "ICE!" which is ice sculptures carved by artists from China.  This year's theme was "Merry Madagascar", featuring cartoon figures from the kids' movie.  I was thrilled, however, to see the final room displaying a nativity scene with the Christmas story being read:

 .Lilly loves her Brittany!

 Tom, Jared, and I spent quite a lot of time rehearsing Christmas music for the Christmas orchestra at church...

 And we've done a bit of ice skating at a local ice rink--Reston Town Center.  The girls' school had a "skate night" and Anna invited her friend, Rachel, from China, to join us. 

Anna also chose ice skating for her December family date night...fun!

 The girls and I have been doing a lot of Christmas baking...and they worked hard on chocolate covered pretzels to give to teachers and neighbors as well as our annual gingerbread nativity scene...

 And today, being the first day of Christmas break, will be filled with cleaning the house and continuing to prepare goodies for tomorrow's Christmas Eve dinner and dessert!  We are excited to be hosting Nana, Pap Pap, Uncle Doug, Uncle Justin and Auntie Lita, JOshua, Abby, Delaney, and Elianna at our house for Christmas Eve.

THen Christmas Day we'll go to Justin and LIta's house after church.

Then the 26th we'll head north to New Jersey to drop off the big kiddos while Tom and I bring LIlly back down to CHOP on the 27th for surgery to--=Lord willing--finally clear her of this nasty lingering infection.

Looking ahead, January will be full with lots planned for the weekend...and we are hoping to have our Article 5 and travel approval for China prior to Chinese New Year.  Our trip to bring home Isabel could, Lord willing, be as early as early February.  Though I realize the timing (all in God's hands) could slip and it might be late February or early March before we go...  We got some new photos of her yesterday so I'll close with one of those!

I-800A Provisional Approval is in the House

After a busy day of decorating for Christmas, making grocery lists, taking the dog for a long run, preparing dinner early so it would be ready after my typical afternoon marathon in the car with the kids, and then running around from doctors to pharmacies to labs to swim team to track practice to the grocery store to home...then getting dinner on the table, eating, clearing the table, cleaning the kitchen, hanging ornaments on the tree with the kids, getting everyone tucked in, making tomorrow's lunches, and FINALLY sitting down with a cup of decaf green tea to decompress with my man, I realized I had not yet checked today's mail.

And I had a nagging feeling that I should go out in the dark to bring it in.

SO glad I did. 

There it was--the envelope from Homeland Security, containing our all-important I-800 A Provisional Approval for Isabel's immigration to the United States.  Lots of alphabet soup in the adoption world...but what this means is we are in the final stages of the adoption process before the actual travel.  Hoo--Ray!

Just scanned it in (realized after the fact that Tom was only joking when he suggested getting right onto the computer and scanning it in so it's in our agency's inbox first thing tomorrow) and e-mailed it off. 

Then I realized I had to let all of you know these details.

Now--at long last--to bed.

'night.

Next Steps.

Praise the Lord, the school week has had a great start.  Lilly re-entered the classroom scene with a little bit of anxiety yesterday, but is right back in the swing of things (including today's "friendship feast" between little kindergarten pilgrims and indians).  After a good weekend of swim meets, Anna has been doing well with occasional doses of anti-nausea medication.  For both girls, we are looking ahead and more specific steps.

After discussions with Dr. Campbell today, Lilly is scheduled for another surgery to address her infection on 27 December.  As the antibiotic has done its work over the past few days, we have noticed a small collection of fluid under one of her scars corresponding to the remaining upper part of her left VEPTR device: a little clue.  Dr. C had removed the lower portion of that same device in September, suspicious that the bacteria were there.  Now we are pretty certain the remaining bacteria are harbored on that upper portion that is still in place.  We are thankful to have seen that little clue a few days ago--we e-mailed a photo of it to Dr. C--and are hopeful this may be, Lord willing, the last surgery to address her infection before we get back on track with regular expansion surgeries. 

After discussions with Anna's ENT today, we are increasingly considering the possibility that Anna has Ménière's Disease, an inner ear disorder that affects hearing and balance.  We will also undergo some genetic testing that could point to other causes of her hearing loss.  The ENT is recommending a low sodium diet to attempt to alleviate the symptoms of dizziness and nausea that she has suffered recently, which could be caused by fluid imbalances in her inner ear.  Tomorrow Anna goes back to receive her hearing aid, and is very excited about the prospect of having bilateral hearing again. Stay tuned for photos.

So now I get to design family meals that will a) be high in calories and enable Lilly to gain weight rapidly and b) be low in sodium for Anna's sake.  I think we'll start after Thanksgiving!

We have much for which to be thankful. 

Health Updates on my Girls...Fitting Together Puzzle Pieces

Last week was quite a week. 

I was blessed to be able to attend a women's retreat with ladies from our new church home--Chantilly Bible Church--and it was wonderful to get away, get to know some new friends, enjoy crisp fall weather, and hear some teaching from the Word. 

Everything was great...until the text message I received from Tom on Sunday morning, in response to my text to him asking "Are you guys getting ready to go to church?"

His reply: "No.  Lilly had fevers last night. We're staying home."

Gulp.  My heart sank.  Backing up a few days:  Lilly had finished her last round of antibiotics on Tuesday the 15th, just 5 days prior to the fevers beginning. 

"Please Lord, let it be viral.  Please Lord, let it not be the infection still lingering." 

We dosed her with tylenol and motrin round the clock to keep the increasingly higher fevers at bay.  Her pain levels began to increase in all the usual places to the point where we were back on oxycodone and valium to manage it. 

While I was home nursing Lilly, the school nurse called midday Monday to let me know Anna had come to her office feeling nauseous.  This news almost made me feel relieved, thinking that Lilly might also be fighting a viral stomach bug.  After all, she had wretched a litle bit Monday morning after taking some medicine.  Never before have I so wanted my child to show sings of the stomach flu.

So, Anna joined us at home that Monday with one of the bizarre "stomach bugs" that she tends to get now and then.  I say they are bizarre because they do not follow the normal pattern of a 24-hour bug.  Rather than feeling absolutely miserable for 24 hours, having no appetite, and basically keeping nothing down, she feels ill once every 6-8 hours or so, but has an appetite in between and seems pretty normal otherwise.  It's just that pesky throwing up every now and then that means she can't go to school. 

So, as Lilly continued to fever and suffer from pain (with no signs of any other illness...no nausea, no upper respiratory syptoms, no issues with digestion or urination), Anna was home with us for the next 2 days of school.  By Thursday, I thought she was ready to try again and sent her to school.  That was the same day Tom had made arrangements for Lilly to get in for some lab work and chest x-rays to figure out what was going on with her.  So, while I was at Ft. Belvoir's hospital with Lilly, I got another call from Anna's school nurse to let me know she was back in her office, complaining again of nausea.  Tom had to leave work early to go pick up Anna.  Meanwhile, Lilly and I picked up our new prescription of oral antibiotics, the blood work showing that her white counts and other markers for bacterial infection were highly elevated.

Back home again with both my girls on Thursday afternoon, I started connecting some dots with Anna's mystery illnesses.

The last time she suffered from this illness was back in February when Nana was staying with Jared and Anna while Lilly, Tom and I were in Philly for Lilly's initial VEPTR placement surgery.  This was when Anna had also first begun to complain that she had weird "static" and "morse code" noises in her left ear and had trouble hearing out of it.  At the time, I had written off the weird ear issues as just part of whatever her weird viral stomach issues had been and thought it would pass.  The stomach issues did, the tinnitis in the ear did not.

So, as you know if you have been keeping up with us, we have traveled a long road of evaluating Anna's hearing which will culminate in getting her first hearing aid this week (she is SO excited, BTW).  There hasn't been any other episodes of the "bizarre stomach bug" until now.  But there have been recent episodes of dizziness/vertigo, which also required her to come home from school. 

By now, you are probably all wondering why it has taken me so long to connect the dots....

I believe that Anna's bizarre stomach bugs are not at all infectious.  I now believe they are simply another aspect to her inner ear issues, triggering the nausea center of her brain.  Researching unilateral hearing loss in children, I have discovered that often times other symptoms can include dizziness and nausea.  We tried giving her some dramamine at night Thursday night and some Robine Friday morning before school (both anti-emitics that help with motion sickness), and she felt great.  Confirmation.

I hope to discuss this theory with her ENT when we see him this week. 

Lilly, meanwhile, has been on her antibiotics again now for 3 days and has been fever free for over 36 hours now.  Again, confirmation that the infection is still here.  She is still having some pain, especially at night, but hopefully that will also soon subside.

So, both Anna's and Lilly's puzzles are getting pieced together.  I am thankful for answers, even though, in Lilly's case, it raises more difficult questions. 

What to do next?

We hope to consult with Dr. Campbell this week to get his take and discuss some possible solutions to the lingering staphoreous infection.  I won't even begin to discuss what my mama's brain starts to list as possible treatment options...I only pretend to have medical knowledge because I'm married to a doc.  But I have enough knowledge only to be dangerous and/or cause myself worry.  So I won't go there with you.

This morning, I am hopeful that both of my girls will be back to school (Lilly, of course, having missed the entire week last week, is nervous about re-entry) and our lives will have some semblance of routine again, at least for a few days until Thanksgiving break. 

Thanks for sticking with me on this long post.  It was probably written more for me that for you...it helps me to process our crazy lives when I write it all out!

Moving Forward

Just a quick update to let you all know that we have, finally, received our Virginia child abuse clearances.  Our homestudy update has been finalized, reviewed by CCAI, and our supplement 3 paperwork is on its way to the USCIS lockbox as I type.  A few days from now, CCAI will file our I800 paperwork to USCIS so that our I800 approval process can run parallel to the supplement 3 processing (as I understand it). 

Our best guess is that we'll be traveling sometime around February of next year.  Not soon enough!  Especially after receiving this new photo of Isabel taken by a family who just returned home with their little boy, who was also at Luoyang Children's Welfare Institute.

I just want to hug this little girl and kiss those cute cheeks!  Lilly says she looks like she needs lots of hugs.  I am thankful for the holidays around the corner which are always a huge time warp and will be a divine distraction from the wait.

On a separate note, we are *hoping* we are moving forward on the post op infection front with Lilly....but as she is currently under the weather with fevers and some pain (having just finished her last round of antibiotics last week--5 months after this all started), we are praying that the infection is not recurring.  Because Anna has also come home from school today with nausea and sore throat, we are hopeful Lilly is simply fighting a virus...please pray with us that this is the case.

LOA! LOA! LOA!

Just a very quick post to announce that we received our LOA on Tuesday.  It is the final approval from China to adopt Isabel, basically seeking our confirmation that "why, yes we do want to adopt this sweet little girl!"  After a flurry of paperwork, it is signed and on its way back to CCAI to be forwarded on to China.  This is wonderful news, and a huge step forward in the process. 

Unfortunately for us, however, we cannot move on to the next step until our homestudy update is finalized.  And it cannot be finalized until our Virginia child abuse clearances come through; the current backlog means that they will still be a few more days in coming, even though it's been over 3 weeks since we submitted them.

Once it is finalized, we can submit it along with our supplement 3 filing to the US Citizenship and Immigration Service (USCIS).

And THEN, we can proceed with the next big step, which is to submit our I-800 paperwork to USCIS for our final immigration approval to bring Isabel home.

Once the I-800 paperwork is submitted, we are looking at travel in the following 11-15 weeks or so   (after we receive our Travel Approval (TA) and Consulate Appointment (CA) date.)

Soooo...all that to simply say: it's looking like we could travel sometime around late January or early February 2012. 

Thank God we have the holidays just around the corner to divert our minds from the wait.  If only she could have been here to share them with us this year.  But we trust that the timing is in God's hands, and we pray that she is receiving nurture and love and care while she waits.

All about Anna

Turning the attention of this blog away from yours truly (as I continue "doing" daily life as it flies by, enjoying the joy in the journey along the way...), I was struck while out running yesterday with some of the awesome things about my beautiful Anna that I wanted to share with all of you.

First of all, she is the "middle child."  It is an obvious fact, a title that she acquired when we brought Lilly home some 2 1/2 years ago, but something that we don't often think about. It was brought up yesterday by her pediatric ENT doctor as he asked her about her siblings, and he commiserated with her (and I chimed in, too, as a middle child) as a fellow middle child.  It felt like the three of us were in a special "club" for those with an older and a younger sibling.  The term holds a certain connotation--for good reason.  In Anna's case, it is manifested in her being either considered "Jared's little sister" or "Lilly's big sister," and, truth be told, most of the time it is the latter. 

But Anna, on her own merits, is worth her own title.  Simply "Anna." 

Allow me to tell you some of the ways Anna has impressed me of late.

• She has managed a difficult school transition with very little fanfare.  With our most recent move, Jared has paved the way to High School, which has earned him a sense of accomplishment and a new level independence. Lilly has embarked on a new journey called kindergarten and kindergarteners naturally just steal the show.  But Anna's move here brought her from a school district where she had already completed the last year of elementary school (5th grade) to a new school district where her grade level is, once again, in elementary school (6th grade).  No excitement of graduating to a new level of education for my Anna this year.  Instead, she is top of the school, coming in on the last year of elementary school with lots of kids that have been together since kindergarten.  Not an easy transition.  Anna is quite social, but her interests are often different than other girls her age so true friendships don't always come easily for her.  She seems, however, to be doing really well and has a couple of new friends that she seems excited about. 

• She is learning to be others' focused.  This is something that it takes many of us years and years to learn.  Anna, however, made some big leaps in this area when we brought LIlly home from China, and continues to shine in this regard.  Most 6th graders don't have to worry about their kindergarten-aged siblings too much.  Anna, however, willingly continues to sit with the kindergarteners in the front of the school bus and help Lilly with her backpack almost every day, simply because she knows that Lilly needs and wants her help.  She did confide to me that sometimes she longs to sit in the back of the bus with the older kids, and I gave her the green light to do so, knowing that Lilly can and will adapt to not having her big sister by her side, but Anna continues on her own initiative to provide Lilly that extra measure of security during their rides to and from school.

• She is pressing on in her swimming, despite feeling like she doesn't quite fit in.  As I mentioned above, forming good friendships is not always easy for Anna, and this pre-teen stage makes it even more difficult, it seems.  With the swim team here, she has lamented more than once that she feels like none of the kids are interested in talking to her and they give her weird looks when she attempts to strike up conversation with them.  The one swimmer that she knows the best (they are in the same class at school and we carpool) approaches swimming and most things in general differently than Anna does, and so a close friendship is not looking likely.  Still, she does not complain when it's time to go to practice or a meet, and she truly sees the benefit in physical activity and wants to improve.
  
  
  
  
  
• She is learning to be more teachable and moldable.  This, again, is something that can take years to develop.  Anna will readily admit that it has been an area of struggle in her life.  By God's grace, however, we are seeing some progress in this area, and Anna understands the need for this trait.  She is learning to spend time quietly with God, looking to Him for her worth and her beauty.
• She is dealing with her hearing loss with grace and patience.  The issue first manifested itself to us back in February, just days before we headed to Philadelphia for Lilly's BIG surgery, just weeks before Nana got pneumonia and almost died, just a few months before Lilly's post op infection, and a few months before our big move.  All of these things caused some major delays in dealing with Anna's hearing loss.  We finally got started on having her hearing loss evaluated in Florida this summer, while LIlly was hospitalized with her infection.  The process takes time, and we are now, finally, getting close to having a hearing aid for her.  She has undergone at least 4 separate hearing tests and has been to at least 8 separate appointments so far as we're determining how best to treat it.  We have several more appointments to go, possibly some genetic testing.  Although she is eager to have her hearing aid and be able to hear, she is compensating for her unilateral hearing without much fanfare.
• She has been dealing with lengthy parental absences, showing growth in maturity.  Because of Lilly's many medical trips, Anna (and Jared) have been left with grandparents and/or friends on numerous occasions, sometimes for just a day or two, sometimes for a week or more at a time.  For Jared, who is older, this hasn't been too much of an issue.  For Anna, however, it is a difficult trial.  She doesn't like to have us away from home, she doesn't like the feeling that things are happening with her sister that she is not fully aware of or informed about.  She is learning to express her need for our communication while we're away and she is learning to be more self-reliant in a host of ways.

Anna with Nana...

Walking to the bus stop with Grammy just before
we left with Lilly for CHOP

• She grows more beautiful by the day, inside and out.  Yes, she's growing up on me.  It is hard to buy clothes for her, as she is sort of in between girls sizes and junior's sizes, but when shopping for an outfit for her to wear to her cousin, Tanya's wedding,  I realized how physically grown up looking she is getting.  And, because of her character development, her outer beauty is matched by her more important inner beauty.  She is not afraid to stand for what she believes in, and she has her own definite sense of style.  She is not afraid to stand out from the crowd, something that will serve her well as the teen years come hurtling our way.

I will leave it at that.  I am thankful I get to be Anna's mom, and am eager to see the plans God has for this strong, spunky, independent, verbal, thoughtful young woman.

And for your viewing pleasure, here are some pics of Anna (and various other folks!) taken recently--most of them at our niece Tanya's October 22 beautiful beach wedding in New Jersey.  (The rest of those photos are on facebook...what a wonderful day!)

Our family.  Anna is a little bit of a "mini-me"...or so I've been told.

Having fun with Tom on the dance floor.

Sharing her daddy for the father-daughter dance.

Taking time to dance with Lilly (though she confided to me

later that she "prefers to dance alone" which she did for most of the reception.)

Keeping it Real: On My Way Back from the Valley...I Pray

Even though I have been posting here fairly regularly to keep friends and family up to date on our lives, our move, Lilly's health, and our upcoming adoption, truth be told I haven't really felt quite like myself for awhile.  This blog is not really about me, Amy, as much as it is about our family life--the momentous, the miraculous, and the mundane.  But since I'm the author, the tone of what appears here is determined by me.

And, you see, I haven't felt much like "me" lately.  Now, every time we move, there is this period of time during which life just seems not quite *right*. During this time, I feel like I am in an altered world where I carry on with the activities of daily life, but I am not quite myself, my emotions can really oscillate, and I generally feel sad and alone.   The length of time can range from just a few weeks to a few months...and even when it seems like I am hitting my stride for the first time post-move, there can still be days that throw me back off of my feet even up until a year later. 

Don't misunderstand me; moving can be very fun and exciting.  I honestly love the Air Force lifestyle and look at every move as an adventure and a chance to meet people I otherwise might never have met, see places I might otherwise never have seen, and allow God to teach me new things and use me in new ways.  I have loved every single place we have lived.  I have dear friends that still live in each of those places and feel extremely blessed to have other friends around the globe with whom I have stayed in touch through many military moves. 

But the "alone-ness" of moving can wear me down.  Moving always forces me to re-evaluate myself, my priorities, my involvement in various activities, my schedule.  As we look for a new church home, it forces us to truly discern what the most important aspects of church life and doctrine are to us.  As we choose extracurricular activities for the kids, it forces us to balance our time, our energy, our finances, their preferences, their gifts.  All of this, by definition, takes place in the midst of feeling disconnected and isolated. 

This particular move was the culmination of many months of intense activity, excitement, and change for all of us.  If you have been following my blog, you know that 2011 has truly been an intense year for us.  Many, many momentous things for us this year, some fun and exciting, some hard and unwelcome: 

• February: major surgery for Lilly at CHOP
• February/March: Decision to adopt again (yay!)
• April: Boston Marathon for Amy (yay!)
• May: another surgery for Lilly
• June: Lilly's surprise infection and hospitalization
• June: Discovery of hearing loss in Anna
• July: THE MOVE
• July/August: recurrent infection for Lilly
• September: beginning of a new school year, high school for Jared, 6th grade for Anna, kindergarten for Lilly.
• September: another surgery and hospitalization for Lilly at CHOP

All of the emotion leading up to this move seemed more intense than usual.  It is never easy to say goodbye to the friends we have made.  God has graciously given us amazing friends every place we have lived.  The friends to whom we were saying goodbye in Florida, however, were friends who had supported and loved us through our adoption of Lilly, through her big surgery in February, and through her hospitalizations this summer.  Saying goodbye was hard. 

The milestones of this new school year also have made this move more intense:  Jared beginning high school (weren't we just yesterday doing MOMS club play dates at the park??) and Lilly starting kindergarten have made for an emotionally intense sandwich for me.

Tom's new position in this place--and the ambiguities of his role and responsibilties, without the joys for him of seeing patients yet--has also been a big adjustment for him--and hence for us.

Finally, my regular regimen of intense athletic training, which has often been the mainstay of my mental health, has been disrupted in this place--during the summer by the lack of any kind of routine or rhythm, and--now that school has started--by Jared's early morning schedule for high school.  In this place I am no longer teaching fitness classes; spinning in my basement without anyone there expecting a great workout or looking for motivation just isn't as much fun and it takes a lot more self-discpline.  I have no races on my calendar to give me that extra motivation to overcome grogginess for that 4am long run in the darkness.

And, so, I have felt a little "off."

But now, the good news.  I am on my way back. Back to myself, in a whole new way.

Yes, indeed.  I believe I have come through the valley, and am re-discovering joy amidst our new routines, our new relationships, and our new roles in this new place.

• I am re-learning to rest in the Lord and lean hard on Him for my purpose (to bring him glory and to enjoy Him) each day.  I am re-prioritizing my early morning quiet time, which is a glorious chance to soak up God's word and put my day ahead into perspective with prayer.
• I am realizing that it is "ok" to not be female athlete of the year for awhile (even though I am milling around a few possibilities for marathons and triathlons for next year).  As long as I'm being honest and transparent, I'll say it.  It is even ok to be a couple of pounds heavier than I prefer, and I don't need to beat myself up over it.
• I am learning new habits and organizational strategies to make my days purposeful and productive--which always feels better than sitting around on facebook.
• We have found a new church home--and not only is it a place where the truth is preached and solid teaching is available for each of us, but God has seen fit to allow us to be a part of a congregation with an embedded Chinese congregation.  How cool for Lilly (and Isabel, soon!) and the rest of us! 

Even though I know there will still be ups and downs, I feel fresh and renewed for what lies ahead.  Surely, there is only more excitement and challenge to come.
 

Chilling at the Philadelphia Ronald McDonald House...Home Soon!

After a long day of pretty much just sitting around and waiting for final lab results, prescriptions, and discharge orders yesterday, we were finally on our way our of the parking garage at CHOP around 6pm last night. Dr. Campbell came by late in the afternoon (he is SUCH a nice man!!) and felt that she should spend one night locally before we headed home just to make sure she was doing well. ALl of her blood work looked improved and the cultures from her tissue samples were still showing non growth of anything bad. He said "you have your work cut out for you..." meaning in the realm of her very low body weight. He wants us to work really hard on increasing her caloric intake so that she can "put some meat on her bones" before he attempts to re-insert the portion of the device that he removed. He is thinking that, as long as she has gained significant weight, he would like to try again in about 3 months to reinsert it.

Of course, my first thought was "Hmmmmmm, I wonder if that will be before or after we get Isabel, or will it be smack in the same time frame as when we'll be traveling??" Life is indeed complicated and full, but somehow I can rest knowing that in the Lord, all things are possible.

So we spent last night chilling at the Ronald McDonald House (I never cease to be amazed by what an awesome place this is!) and Lord willing today we will be on the road toward home, collecting Anna from my brother's house near Baltimore, and re-joining Jared who had a long day of band competitions yesterday and didn't even get home until 11:30pm last night. He may still be sleeping when new arrive.

As we return home, I am praying for wisdom to know when LIlly is physically ready to go back to school (regardless of how she feels about returning to school) and praying that we can now settle back into fall routines and avoid any imminent hospitalizations. (though we hope to get our referral soon for Anna to see an ENT who can implant her BAHA hearing aid).

Anyway, I cannot wait to be reunited with my big kids! Homeward bound!

Praise the Lord!

Feeling Ready to Get Home

Keeping this short tonight...we didn't get a long nap today, so I'm ready to join Lilly in slumberland.

She had a fabulous night last night. We remained roommate-less, and she slept SO soundly that she managed to barely awaken for her bladder (I did have to change some sheets in the middle of the night), and to entirely sleep through the blaring pulse ox alarm that persisted when the little light sensor came off of her finger (because she had rolled all over the bed and the wire was wrapped around her body), a blood draw early this morning, and the administration of oral meds early this morning.

We had a fun and relatively uneventful day. She barely complained of any pain all day (a little muscle spasm just before bed tonight) and is moving around pretty much normally. We spent much of the day in the play room, where we found all sorts of fun activities. Her appetite continues to be good, and we did have a consult with the nutrition department to gain some strategies for increasing her caloric intake (gonna' have to do that without upping mine!). The infectious disease team stopped in to discuss management of oral antibiotics upon discharge...we are going to go with a much less potent antibiotic for a few weeks post op, then hopefully will be fever free and antibiotic free thereafter. The ortho residents came by to change her dressings and her incisions continue to look lovely (as lovely as incisions and stitches can look--this is actually the best they have ever looked to me). She hates to have her dressings changed or her back even looked at, so she did protest quite loudly while they changed the dressing (which was, unfortunately concurrent with the infections disease team's visit because they wanted to see her incisions too).

We do not have a clear timeframe for discharge, which is a little frustrating, as we try to coordinate care for the older kiddos at home through the weekend. The longer we stay here, the more complicated it gets. We are hoping Dr. C might call in tomorrow with discharge instructions so we can get on home. We are all ready.

We are so grateful to God for the healing we are seeing in Lilly and for the opportunity to bring Him glory in sickness and in health. May He be magnified in our circumstances, whatever the outcome. Thanks to all of your for your comments and prayers!

Night and Day

Well, after my post last night, I was looking forward to and praying for a good night's rest with few interruptions.

Silly me. It is a hospital, after all.

Lilly did sleep soundly from about 11pm-2am. So did I. Around 2am her O2 sats started to drop and the alarms started ringing. Didn't disturb her, but no way could I sleep through them. After a few minutes, her sats would go back up. (and I know how to turn off the annoying alarms, but the way the room was set up, it required climbing out of bed to reach the box.) After a bit, the nurse brought in some O2 blow-by and all was well again. Until around 3am, when the nurse came in to alert me to the possibility that our room--set up as a private room (our first private room at CHOP--very exciting...especially if you remember the snoring Amish mom from our stay in February) could very well be getting a roommate after all. Sure enough, by 4am they started rearranging furniture and bringing in another bed and a room partition and scooting Lilly's bed nearer to mine (and the hospital beds, when moved, insist on beeping like a semi truck backing up). So lots of commotion.

I know I mentioned last night that Lilly was ravenous before bed. So in the middle of the night, when she was awakened by all the ruckus, she decided she was hungry again and needed to eat *now*. She actually wanted more tuna! I declined on feeding her tuna at 4am, but given that Dr. Campbell really wants her to gain weight, I relented and let her have some fruity snacks (neater and less stinky). She was pleasant as could be, and when she heard we would be receiving a roommate, she commented randomly "maybe her name will be Lillian, too." (In hospital settings, she mostly gets called Lillian since that is her given name). Sure enough, our new roommate was another Lillian--only about 10 years older than our Lilly.

So, needless to say, we did not get much sleep between about 4-6 am (and from 2-6 am for me). Once shift change occurred at 7am, I was wide awake, sincve my body is used to a much earlier morning wake up time anyway.

Lilly, however, slept nicely until nearly 9am, and our roommate and her mom slept till nearly 11am since they had spent almost the entire nigth in the ER prior to admission. So we spent our first few hours trying to be very quiet for the roommate. Thankfully, we knew her name was Lillian, too, as the lab almost drew blood on the wrong patient until I made sure he had the right last name...

Lilly's mood was great, and her appetite was great, for the early part of our morning. Until we decided to get out of bed and go to the play room in order to be able to talk above a whisper. Once Lilly attempted to bear her own weight, either standing or sitting in a chair upright, she was in severe pain. Severely severe. Off of that pain chart...there are no cute faces to match the grimace she was making. Poor thing. So we added some valium to the mix of meds she is getting, and it seemed to help a little.

We spent some time this morning doing some amazing crafts (she directed and supervised while being held in Tom's lap and I did all the grunt work...) I should post a photo of "her" creation since the concept was pretty creative even though technically I did the cutting and gluing.

As for me, my wonderful man hung out with Lilly while I got out for a little jog and an excursion to find batteries for her Leapster game and Greek yogurt for my breakfasts. SO GOOD to get fresh air and moderate exercise.

Then it was lunchtime...pain still nagging, appetite not as fabulous as it had been. And then, sas I held her while she moaned about the pain (pain meds just taken, but not yet kicked in) she fell asleep. Deeply asleep. For about 3 hours. Guess she needed that rest, cause the rest of the day was a night and day difference in her pain level, her countenance, her energy, her mobility (almost totally normal now), and her eagerness to engage in fun activities.

The rest of the day we spent playing with toys we brought from home, watching some "Olivia" episodes I downloaded from iTunes (she first saw Olivia in the waiting room before surgery and really liked it...) and eating dinner. Appetite was back, praise God.

Because of her mongo nap, bedtime was on the late side tonight. I kept her up and we played with her toys until her next dose of pain meds so she wouldn't have to be awakened to take them.

We are thankful that Tom has a room at the Romald McDonald house tonight--they haven't had space the past few nights. Now he is walking distance away. Wonderful, wonderful charity. I hope to run the Philly marathon next fall as a fundraiser for the Philadelphia Ronald McDonald house--a blog post for another day, I suppose.

Dr. Campbell came in late in the afternoon to check in. The lab results from her tissue samples are, so far, not showing any bacteria. In all other regards, she is doing great. Tomorrow we'll do blood work and the tissue sample cultures should be final. We will also have a consult with Infectious Disease specialty and hopefully a consult with a dietician to give us some strategies for helping her gain weight. We are hopeful we any be discharged as early as Saturday...

Hoping so. SUre do miss my big kids. They are holding up well at home with Grammy and Pop Pop, praise God. One of the biggest downsides to all of these medical visits with Lilly is, for me, the feeling that I am missing out on their lives and neglecting them somehow. The upside is that they have developed new and wonderful self-sufficiencies in many ways, and are showing growth and maturity. Gotta' love that.

OK, enough words...time for sleep. More tomorrow.

Resting Comfortably

What a day.

There are almost no words to truly describe the gamut of thoughts and feelings I have tonight as I watch Lilly sleep in her hospital bed. Gratitude is the overwhelming emotion--gratitude to God for answering prayers for a safe surgery, for guiding Dr. Campbell's hand, for Lilly's amazing endurance and attitude through our long day of waiting and fasting. Gratitude that I get to be Mama to this spunky and beautiful child who has come SUCH a long way since she came home from China two and a half years ago, even just since her very first surgery almost a year ago to the day. Gratitude that we live in a place and have health insurance that allows us to access the quality of care, technology, skill, and expertise that we have been blessed with to help Lilly's spine to straighten and ribcage to expand, allowing her to lead a relatively healthy life into adulthood. Gratitude for family members that are available and eager to help however we might need. Gratitude that, even though we just moved and still feel relatively "new" and "disconnected" in our new home, we already have great neighbors wanting to help and a new church family lifting us up in prayer, even though we have really only met a few people there. Gratitude for friends around the globe who love us and are praying for us as well.

And at this moment, I am thankful for the soft sound of Lilly's easy breathing, for the quietness of a private hospital room (no snoring Amish moms this time! :)), and for the hope that Dr. Campbell may have solved Lilly's ongoing pain and fevers.

Wow. So much for which to be thankful.

Here is the scoop on the surgery itself:

Dr. Campbell removed the lower portion of LIlly's VEPTR device on her left side. The hook on her pelvis had slipped, and the rod was displaced. That definitley explains the persistent pain on that side of her body. THe skin coverage at that location is also quite poor and Dr. Campbell suspects that her body will benefit from not having any metal in that location for awhile--at least until she can put a little more meat on her bones. He is suspicious that the bacteria are also lingering on this portion of the hardware, and we are hopeful that this may solve both problems. There were no other visible signs of infection anywhere, but he did take some tissue samples to see if any bacteria grow out of them when cultured. He wants her to stay here for a few days to monitor her and to await the cultures and further blood work. Even though our wait before surgery was long today, the surgery itself was pretty quick, and Lilly's recovery this time has been MUCH easier than any other surgery. She was ravenous once she was awake enough to realize it, and ate nearly 10 little saltine packets, some yogurt, some fruity snacks, some apple juice, and topped it off with nearly 9 ounces (3 small cans) of canned tuna. Wow. She is looking forward to breakfast tomorrow and has already selected bacon, sausage, chocolate chip pancakes, pears, and chocolate milk from the menu.

She is a little dizzy when she stands, and I'm sure things will feel a little different to her when she tries to walk, since without that rod, her center of balance may be a little off. We'll see how she feels tomorrow.

For now, I am ready for some sleep, and am praying that she sleeps soundly and peacefully tonight.

Thanks again for your love and prayers.

Surgery Day

We are on the road to CHOP as I write. We had a full day of co salutations and radiology studies on Monday, and all went smoothly. We spent the last two nights in New Jersey with Tom's siblings and their families, thankful for the chance to get away from the medical setting and catch up with everyone.

Even so, underlying all that we do on these "down" days is the knowledge that surgery day is right around the corner. We have seen God do amazing thongs in Lilly's life, and we completely trust Him to care for her in better ways than we can ask or imagine. Still, as we drive south this morning, the shift in Lilly's mood from carefree to pensive and anxious is palpable. It is hard to see her afraid...especially when we ourselves are feeling a bit of anxiety. So, now we focus on giving thanks and lifting her to Him in prayer.

Our show time today is 11:30am. Dr. Campbell plans to re-position one of her VEPTR rods that he discovered on Monday's CT had migrated a bit. That could explain the pain on her left side. But not the fevers. So he also plans to use a small instrument to test areas along her rods for infection. If he can find any small infected areas (nothing large shows up on MRI, ultrasound, or CT), he will open her in that spot and flush her out. If it seems that an entire piece of hardware is infected, he may opt to remove it for a time, re-implanting at a later date. So it's impossible to know how ling her surgery will last today or how lo g her recovery might be.

We are thankful for our families, friends, and church family in both Florida and our new church in VA lifting Lilly to our sovereign Lord this day. Also encouraging me today is reading about the awesome thongs God is doing for my friend, Sonia, and her family who are in the midst of adopting a little boy with a serious heart defect. If you could use a dose of encouragement and humor, I highly recommend her blog: http://cheaperbythehalfdozens.blogspot.com

God is good, gracious, sovereign, and mighty to save.

Time to see the Doctor...again...

So, it was a great weekend--shopping day with my girls on Saturday, Tom built two beautiful book cases so we can unpack the last of the book boxes, the kids all got to spend lots of time playing outside, and Lilly even jumped over a few hurdles and played with some of the sweet neighborhood kids outside and even at their houses without mommy right by her side. Amazing. And, best of all, we think we have found our new home church, and it feels good to tentatively start to put our feet down and get involved.

Grammy and Pop Pop arrived safely last night to take care of Jared and Anna while Tom, Lilly, and I will head up to Philadelphia to see Dr. Campbell this morning. He will have the results of last week's MRI and ultrasound, and we will be discussing what he thinks is the best way to address the ongoing infection in Lilly's hardware. I wish I could tell you what some of the options are, but I would only be speculating. Lilly is tentatively scheduled for surgery on Wednesday the 21st; so our stay in Philly could be all week (depending on what exactly they do and how her recovery goes.)

So, we are getting packed up this morning. I am so much less organized than I like to be when packing for a medical trip...I guess it is getting more routine, and the fact that there is no air travel makes packing a lot less stressful. I think Ihave also learned that I don't need to bring NEARLY as much stuff to entertain Lilly--books, coloring books, little toys, etc.--because she doesn't usually feel much like playing or coloring when we're at the hospital. I am eager to have this infection wiped out...but the hospital stay is something that I am not looking forward to. The first few times, it was a novelty and, even though hospitalization is hard, my adrenaline seemed to make it all quicker. This time, however, after our hospitalizations in FLorida this summer and all that they entailed, I have to admit I am sort of dreading it this time. The folks at CHOP are fabulous, don't get me wrong. Couldn't ask for better care, hands down. But the sleep deprivation, the lack of regular exercise or regular routine of any sort, and--most of all--seeing Lilly in pain and discomfort are things that make me want to curl up and stay in bed.

Our prayer is that God would bring healing to her little body. That Dr. Campbell would have wisdom to know the best course of treatment for her and that God would guide his hands during surgery. That Lilly would continue to be strong and spunky and endure these hard hospital visit with grace. That Jared and Anna would thrive in their regular weekly routines (and Anna would feel comfortable with her new swim team--practices start today). That their bond with Grammy and Pop Pop would grow stronger with this extended time together. That everyone back on the home front would stay safe and healthy.

I'll keep updates coming on Facebook and more details here. Stay tuned!

Headed to Philly

So in the midst of transitions to school and our new home, we have been continuing to manage Lilly's infection using potent oral antibiotics.  Her second round of meds was beginning to run dry a few weeks ago, and we had started to stretch out her doses in the hopes of making them last longer.  But sure enough, after being off of them for about 2 days, Lilly began to fever again and complain of pain in all the usual places--tummy, left side of abdomen, left arm, and left side of her lower back, and upper left leg.  Confirmation that, while the antiobiotics are effective at keeping the bacteria at bay and not allowing it to enter her bloodstream, once she no longer has the help of the meds, the bacteria (that are likely colonized on her hardware, where there is no bloodflow) can re-enter her bloodstream and cause her body to fight them with a fever.  So, thankful to have one refill available on her prescription, we quickly picked up some more meds and got on Dr. Campbell's calendar to see how we can address this infection.
 
Lilly and I are headed to Philly this afternoon for some radiology studies on Wednesday the 14th.  We have a room waiting for us at the Ronald McDonald House in New Jersey, just over the bridge from Philly.  I am so thankful to be a quick and hopefully easy 3+ hour drive to CHOP from our new home! 

We will head back up to CHOP next Monday the 19th for an office visit with Dr. Campbell and at that point we'll discuss what he thinks is the best way to address the infection.  She is tentatively scheduled to go to the OR on Wednesday the 21st.  So Tom has taken the whole week off in anticipation of surgery and recovery time, and I have already let her new kindergarten teacher know that Lilly is likely to miss the whole week of school.  She is due for her next expansion soon, too, but I'm not sure if Dr. C will address that at the same time or if we'll be back for the expansion surgery.

Hopefully her week off won't make it hard for her to return to school after she is just beginning to get used to it...but I suspect it will.  We'll cross that bridge when we come to it.  Last night at dinner, she was debating which was the lesser of the evils: going to school or having surgery.  Sheesh!

Tom's folks are coming down to stay with Jared and Anna, so they can stay in their routines, for which we are really grateful.  So glad it's an easier drive to VA than to FL for our parents when we need their help!   

Prayers for Lilly's healing are most appreciated! 

A Catch-up Photo Journal...

So, for the final few weeks before school started, we did  alot of fun things (other than be amazed by natural disasters and the miracle of birth in our home.)  Here are some photos for your enjoyment:

Lilly at Orkney Springs, where Jared spent a week of overnight band camp.  We attended family day at the end of the week to see them perform their field show--fun day!
 

Reunited with Jared after his absence all week.

Lovin' on my Anna

Jared loves this little girl!  Fun to watch him walk around the grounds with Lilly on her shoulders. 
Hmmm...maybe a girl magnet?  Nah, not my Jared.

We had a special visit from one of the families in our adoption travel group, who were passing through VA on their way from FL to NY.  So exciting to see Kim, Michael, Sophia, and Bella and how much these girls have grown since we last saw them in Guangzhou!

The kids and I got to celebrate my brother, Justin's birthday at their home in Ellicott City.  I LOVE living closer to my family and being able to share special days like this!

Justin is officially a "coffee geek" and has his own facebook page called "saturday morning espresso."  He does some amazing latte art.

Here are LIlly and Anna with their cousins, Abby, Delaney, and Elli at the American Girl store in Tysons Corner mall.  We went to their American Girl Bistro for a back-to-school lunch with their dolls.  What fun!

Here's Lilly with her "Baby Kit" Bitty Baby

My sister in law, Lita, with Elli

Delaney and Lilly and their dolls.

Our dossier is officially sent to China...this is one of the last photos we snapped of ourselves as a couple as we still needed some "couple" photos to include in the dossier.  Now we are working on an update to our home study since we've moved...more paperwork and notarizations and fingerprints...ugh.  But we are still somewhat hopeful we could travel late this year or early next year!

My parents and my brother, Doug, joined us for Labor Day weekend.  Here, Nana is giving each of the granddaughters a special teacups from her collection.  They got to choose their favorite two.  So exciting!

Here's my brother, Doug (aka "Uncle Duck") at Justin's house.

Lilly saying thank you for the beautiful tea cups.

Anna loving her Nana.

The delicious 70th birthay dinner for Pap Pap.  Justin and Lita grilled salmon and Joshua made zucchini bruschetta.  Abby made goat cheese-tomato bruschetta.  And the meal was topped off with some yummy lattes!  How fun, once again, to live close enough to get together with my family!!

In addition to fun with family, we began a new school year on 6 September, with Jared starting high school, ANna starting 6th grade, and Lilly starting Kindergarten.  Lots of transitions for all.  Thankfully, Anna and Lilly are at the same elementary school, riding the same bus, which has made it a *little* easier for Lilly to transition to school, but she is still suffering from pretty severe separation anxiety and each morning we are still having tears before school.  Here are some photos from day 1:

Jared, ready to head out into the pre-dawn darkness at 6:15am.  He's been doing great at getting himself up and moving in the morning!  Long days with after-school band practice 3 nights a week...

I hated to wake Lilly on the first day, but now her body clock has adjusted and she is pretty much waking up before I go in to awaken her.

Anna getting ready on day 1.  Her outfit was chosen during our fun shopping outing with her friend Melanie and her mom Catherine back in Florida.  Great memories and a cute look for my growing-up-so-fast girl.

Start the day with a healthy breakfast!

Get those teeth nice and clean!

Ready to go!  New backpacks for both girls (thankfully found one small enough that Lilly can manage it but big enough to hold a folder and her lunch box). 

Waiting for the bus to come!

So glad her sister is with her...

Whole gaggle of kids at our bus stop!

The look of anxiety as the bus pulled up.  Today--day 5 of school--was the first day she boarded the bus with no tears, praise God!



So our first week of school went off well, except on Thursday the rains were so heavy that the roads to the girls' school had flooded and busses couldn't get through.  they were stuck at school until Tom could pick them up in his truck after 6pm...crazy long day!  School was cancelled on Friday becasue the rain was continuing and the roads were still flooded...so it was a long weekend for us, and we got lots done in the house.  Even had some friends over for dinner on Saturday!