One Year Ago Today...

...we were on our way to Zhengzhou, after having spent two days of sightseeing in Beijing with our wonderful travel group.  We were just hours away from meeting Lilly...

I can't belive it has been a year.

I am spending lots of time reminiscing, praising God, and looking at photos.  What a difference a year makes.

Stay tuned for more...

Overdue Update

Wow, can it be that the first month of 2010 is already nearly over??  Unreal.  I have a few minutes just to post an update on what's happening with Lilly's medical care, and hopefully tomorrow or sometime soon I can post some recent photos! 

We had initial consultations with Dr. Robert Campbell at Children's Hospital of Philadelphia (CHOP) over the holidays while we were in New Jersey visiting Tom's family.  Dr. Campbell is one of the pediatric orthopedic surgeons at CHOP, and he is the developer of the VEPTR implant, which stands for "Vertical Expandable Prosthetic Titanium Rib" The VEPTR is the most recent breakthrough in congenital scoliosis treatments in young children with chest wall deformities, and the first child ever to receive a VEPTR is now nearly 20 years old.  If you are really interested in knowing more about this device, feel free to check it out here: http://www.veptr.com/wiki/History%20of%20the%20device.ashx

We were thoroughly impressed with Dr. Campbell, not just with his background and his knowledge, but his willingness to take much time with us during our visit, answer all of our questions, and his ability to connect with Lilly were impressive.  As I suspected, he immediately said that Lilly is a candidate for the VEPTR, and ordered followup images--CT Scans and MRIs, including a dynamic lung function test--to see exactly what is going on orthopedically in her spine and ribs, to see whether her spinal cord is tethered in any way to her vertebrae, and to see to what extent she has thoracic insufficiency syndrome (a fancy way to say that her breathing is compromised by her shape).  While we were in the area, we also had some additional x-rays taken (Lilly hates x-rays, no matter how many times we talk about Curious George smiling while getting x-rays and it not hurting) and we met with the General Surgeon, who will be a part of the surgical team.

So we left our appointments in December feeling good about the doctors, the staff and facilities at CHOP, and the proximity to Tom's family for support.  Praising God for research and development and technology that will allow Lilly to be straight and to grow and, Lord willing, to live a long and healthy life, despite a congenital condition which--if left untreated--would almost certainly have threatened her life at a premature age.  But we also left feeling a little bit out of breath and looking ahead at what is likely to be a long road for Lilly and the rest of us. 

On Thursday of this week, Lilly and I will head back to Philly to meet with the pediatric pulmonologist (another member of the surgical team) and go to pre-op for her upcoming CT and MRI scans.  We will make a separate trip late in February for her to undergo general anaesthesia to have her scans done.  Once they have all of the images they need, the surgical team will meet to review her case and discuss specifically what they will need to do surgically and what the recommended timeline for surgery will be.  Until then, we will stay tuned and be grateful for whatever down time they feel we can enjoy before we embark on this journey. 

Once the initial surgery is done (which is a major surgery with a fairly lengthy recovery, from what I understand), we will make return visits every 6-9 months to have her VEPTRs expanded as she grows.  This will continue until she is done growing, in her teen years. 

Thanks for your prayers for us as we travel this week, and for the surgical team and medical staff at CHOP as they make decisions and care for Lilly.

Stay tuned for more photos from the holidays, Jared's recent 13th birthday (YIKES!!) and daily life in the Cantilina household!

Cantilina Christmas Letter 2009

I think I figured out how to paste our Christmas letter here!  Click on the image (one is the first page, one the second) and your computer should pull it up as a .gif file so it's big enough to read.  Merry Christmas to you all!

Communication Chuckles and Challenges

My last post dealt mainly with Lilly's physical well-being and growth. Let me tell you a few funny things about our communication these days.

• First of all, most of Lilly's language these days is a mixture of Chinese and English, or "Chiglish" as we refer to it in our home. I'm sure by now we have our own dialect of Cantilina Chinglish, as Jared and Anna have each picked up enough Chinese to form many basic sentences, but freely fill in with English words where their Chinese vocabulary fails them.
  
• Lilly's sentences continue to consist mainly of English pronouns, followed by Chinese verbs, followed by English objects. I don't think her brain has quite made the distinction between the two languages. Today, however, I think we had a breakthrough of sorts. Lilly and I were sitting in Tom's office having lunch with him. She asked me a question entirely in Chinese. After I gave her my Chinese answer, she turned to Tom and asked him the same question, entirely in English. He answered her in English, which she understood. I would say that is progress!
  
• Sometimes the Chinglish makes for more challenges. There are several words that sound the same in both languages but have COMPLETELY different meanings. Sometimes it takes me awhile to figure out which language LIlly is speaking. For instance, the word "go" and the Chinese word for dog, "gou." Sometimes I'm not sure if she is talking about Tad or talking about going somewhere. Another--even better--example is that the way she pronounces the word "lollipop" sounds an awful lot like the Chinese word for "to poop." Don't want to get that one mixed up!
  
• Lilly always keeps us laughing with the funny things she says. For example, as Tom was tucking Lilly into bed recently, he said "Good night, princess, I love you!" Lilly promptly and sternly replied "I no pincess...I Lilly!" Even though she was dead serious (don't call this girl by the wrong name!), she joined us in laughing when we cracked up.
  
• One of her nicknames is "Monkey DO!" Whatever Anna or Jared does (especially Anna), Lilly does. Voice inflection. Choice of words. Attitude. This can be a good thing, or a bad thing, depending, of course, on how Anna chooses to act. (no pressure, Anna, but that's a heavy responsibility!) Recently, when I had made a special evening treat of chocolate milkshakes for the kids following Anna's school musical, Lilly sucked hers down quickly, enjoying every last drop. She then proceeded to drink Anna's portion when I remembered that Anna doesn't like chocolate milkshakes. Once Lilly realized that Anna was having an oreo instead, Lilly said "I yao!" (Chinglish--I want one!). When I explained that Anna was having it only because she didn't like chocolate milkshakes Lilly said earnestly (hoping to also get an oreo) "I no like dat" pointing to the second empty chocolate milk glass in front of her. Yeah, right, girl!
  
• Lilly also frequently mimics what she hears other people saying. When I recently said to her "I love you, Lillian Joy!" she came right back at me with "I love you, Mama Joy!"

Another interesting aspect to our lives right now is that anonymity is out the door. When Lilly and I are out and about, people tend to notice this petite--but vocal--and endearingly crooked Chinese girl with her caucasian mama speaking Mandarin. As a result, people who have seen us before remember us when they see us again. Lilly hence has many many friends in Niceville. They like to come over and say hello, frequently offering Lilly lollipops or stickers or just a friendly smile. Lilly is not always so sure what to make of the attention (she likes the sweets, mind you, but she's not always so sure about strangers), but I think it's sweet that people want to shower her with love. The only problem is that this mama cannot always place why we know these people or how they know us! Makes for some awkward moments!



Finally, as Lilly and I were wrapping up a busy morning of shopping at the BX and the Commissary one day this week, she said "Mama, look!" and she made a weird face with her mouth all elongated, her eyebrows raised, and her head tilted slightly back as if she were trying to look up at the ceiling at something. So I followed her gaze to see what she was trying to see. "No, Mama, look at me!" was her response. When I smiled and asked her why she was making a funny face, she said "look at my eyes! They're big, like yours!" and she tried her hardest to contort her face even further to exaggerate big eyes. I almost fell over laughing in the middle of the check out line at the Commissary. I had just recently been telling a friend how I wondered when Lilly would start to notice that her physical appearance is different from the rest of her family. I figured it would be months if not years from now. This girl is sharp!

Lilly's favorite books to read are those that deal with little animals finding their mothers, such as "A Mother for Choco," and "Are You My Mother?" She requests these books over and over, and snuggles a little closer to me when we reach the end and each animal is safe and warm with its mother. Makes me wonder if she remembers her life before us.

Enough for now...I need to go to bed. But before that, here is a link to Anna's performance as Pocahontas in her Disney Spectacular musical last week. Enjoy!

http://www.youtube.com/watch?v=_Qf-JLkHrqA

Update on Lilly's Spine

We had a followup visit with Lilly's orthopedist in Pensacola last week. They did new x-rays (which Lilly didn't enjoy at all) and measured the changes in her curvature since her last visit back in the spring. Her curvature is, not surprisingly, worsening as she grows. And she has grown a lot since we've had her home--8 pounds, 3.5 inches taller, 4 shoe sizes! Good nutrition does wonders.

Growth is good, but the worsening curvature is not. It has gone from 95 degrees about a year ago, 100 degrees in the spring, and now 115 degrees. Her two fused ribs on one side and the corresponding fused vertebrae and hemivertebrae in her spine prevent her left side from growing at the same rate as her right. In fact, the left side really can't expand at all. So, if left untreated, eventually the curvature would have severe impacts on her lung capacity, her cardiac output, and who know what else.

The orthopedist here feels that surgery is now indicated sometime in the next year, no later than a year and a half. After looking at her x-rays and examining her spine (Lilly didn't cry while he looked her over--WAY different than our last visit!), he sat down, looked us in the eyes, took a deep breath, and asked "So, where are your families?"

I knew where he was going. The surgery itself--likely to involve place VEPTR implant growth rods and separating the bone fusions--will be complicated and risky, and is likely to require an ICU stay and lengthy recovery. Being near family to help with the older kids will be key. When we answered "NJ and PA," he said "how about Children's Hospital of Phildadelphia?" (CHOP) He highly respects the surgeons there, and felt that their facilities offered the best care and best outcome for Lilly. I asked about Shriners in Philly (I've heard a lot about Shriners on the various yahoo groups I've found that deal with congenital scoliosis), but he seemed to believe that CHOP would be better. The dr. he referred us to, Dr. Dormans, is the head of pediatric orthopedics at CHOP, and two other surgeons that work there are world renowned for the type of surgery that LIlly is likelt to need. As I've done more research about CHOP and the surgeons there, I am increasingly comfortable and confident in this direction.

After returning home from Pensacola following LIlly's appointment, I had a call within just an hour or so from the staff at CHOP, and they were able to get her scheduled to come in for an initial consult while we're home for Christmas already! We are so thrilled they were able to do this--saving us an extra flight to PA and all the logistical challenges of finding care for the older kids at another time.

Our hope is that we can schedule her surgery for next summer, when the kids are off from school, so we can all go up, let the big kids enjoy time hanging out with their cousins and Grammy and Pop Pop, and Tom and I can be freed up to be in Philadelphia with Lilly.

Pray with us that the surgeons would have wisdom to know the best course of treatment for Lilly, for the timing to work out perfectly, for her health in the meantime to be good, for wisdom about whether and when to seek any second opinions.

Praise God with us for good care already, for her overall great health, for the fact that we are able to be seen while we're already up in the area.

Stay tuned!

A WAY long overdue update!

Happy Fall, Y'all! It has been quite a full and fun few months since I last posted any photos or really updated the blog and what we've been up to!

Fall weather has finally arrived on Florida's central coast, with today a lovely, clear blue sky, 72-degree day. SO happy to hot muggy weather (hopefully) has left us for a few months! Especially since we are just a few short weeks away from Thanksgiving!

Jared's cross-country season has wrapped up, Anna's soccer season has entered the season-finale tournament ("Go Red Dragons!"), and the first 9-weeks of school has concluded. Anna is busy with her violin, attending orchestra two mornings a week before school and taking lessons one afternoon a week; Jared is auditioning for the All-County Band in a few weeks...he better keep practicing that trombone! Winter sports will begin soon--Jared is trying out for the school soccer team, and Anna might go back to the pool...we'll see! The big kids, I have to say, are doing a great job of staying (mostly) on top of all the many things they have to do and are being a great big brother and sister to Lilly. They have full weeks and it amazes me how fast the days just fly by. Juggling their schedules keeps me on my toes, and I have to say I am a firm believer in CARPOOLING! Now I know why my mom was so happy when I got my driver's license way back when.

Lilly has been doing really well. She mostly enjoys her days at school, even though the initial separation can still be a little hard for her. Once she's there, however, she does great and her teachers report that she interacts approrpriately, seems to understand everything that is going on, and is really self-sufficient despite her petite frame. She did not, however, enjoy the class field trip to the Fire Station next door--too big, loud, and scary all around. She got to experience her first Halloween ever last weekend, dressed as a ladybug. At first she was a bit bewildered by the whole experience, but once she realized that candy was the end result of walking up to each house (yes, she learned to say "trick or treat" really quickly), she was eager to not miss a single house in the neighborhood!

We are excited to be spending Thanksgiving in Disney with our niece, Tanya, and are even more excited to be traveling home for Christmas several weeks later. It will be fun for Lilly to meet the rest of her extended family! And it's been several years since we were in NJ or PA for Christmas.

Tom is keeping himself out of trouble (mostly!) by spending lots and lots of time working hard each day. His job is truly an incredibly complex set of roles and responsibilities, and it makes my head swim to hear him talk of the many times each day he has to shift gears. He does it well, does it without seeking recognition, and still manages to come home at night to the kids and me with a smile on his face ready to take on whatever our evenings hold.

As for me, I had marathon-training withdrawal when I didn't run this year's Marine Corps Marathon (took place the next to last week in October), so I have decided to enter the Tallahassee 2010 Marathon (to be run on 7 February) and will do two local half marathons--one in November and one in March. A marathon sandwich of sorts. I am excited to be, once again, running my marathon as a fund raiser, this time for an organization called "Henan Kids International," which is a charity arm of our adoption agency, Chinese Children Adoption International (CCAI). If you would like to sponsor me as I run, following are the instructions on how to do so:

There are two ways to go about this:

1) Go through the Henan Kids International's website. That way you can learn more about the organization and what they are doing for the children in China. You can click on the link pasted here: http://www.henankids.org/sponsor/sponsor.aspx which will take you to the Henan Kids International website. When you click on "make a donation," it will direct you to the CCAI website donation page, where you will designate a one-time gift, a yearly gift, or a monthly gift. In the space provided to designate your funds to a specific project, type in "Amy Cantilina Marathon Fund." This will earmark all of the funds for Lilly's orphanage, the Anyang Social Welfare Institute.

OR

2) You can go directly to the CCAI website's donation page via this link: http://chinesechildren.org/Charity/DonationForm.aspx You would then designate your gift as "one time," "monthly," or "yearly," and then designate the funds for the "Amy Cantilina Marathon Fund" in the space provided for a specific project.

I am excited to think that my running this year can directly benefit Lilly's friends back in China. Any donation can go such a long way for these children waiting for families! Feel free to send me any questions about how to do this, or if you'd rather just mail a check to Henan Kids International.