Update on Rachel: Probably no surgery needed this year!

A lot has happened since our last update:

• Rachel's MRI came back negative for tethered spinal cord (meaning that her spinal cord has NOT retethered; so she does not need another detethering surgery).  She and Lydia will always be at risk of developing a tethered spinal cord, so they will need periodic check-ups in this area, probably every 18 months or so.
• We had mixed feelings about the MRI results.  Although we were happy that she doesn't need to have detethering surgery, her pediatric ortho surgeon had said in June that she will needed skeletal spine surgery very soon, because of a sudden increase in the curvature of her spine (10 degree increase in 6 months, from January to June).  If the increase in curvature ended up being due to a retethered spinal cord, then presumably a detethering operation would stop the curvature from increasing.
• We began trying to get Rachel in to see one of the scoliosis specialists at Texas Scottish Rite Hospital for Children in Dallas.  (This was by no means a sure thing because TSRHC typically only sees patients who are Texas residents).  In any event, because skeletal spine surgery can have profound future implications (especially for a 4-year-old), we wanted to get a second opinion before deciding for sure what to do, and TSRHC has done some pioneering work in the field of scoliosis treatment (and they are relatively close by).
• We received notice a few weeks ago that Rachel was accepted into the spina bifida / scoliosis clinic at TSRHC.  However, the next available clinic date was not until October 20.  Our impression from the ortho surgeon in OKC was that she would need either surgery or bracing within a couple months (and that assessment was made in June).
• We called TSRHC to see if we could be placed on a waiting list in case there ended up being a cancellation.  One of the patient access representatives agreed last week to start checking daily for cancellations to help us get in sooner.
• We found out Wednesday (8/12) late afternoon that there was a cancellation for Thursday afternoon.
• So, Rachel and Steve left for Dallas Thursday morning and met with one of their scoliosis physicians Thursday afternoon.
• Based on his observations of her and his evaluation of her x-rays and MRI and CT imaging, he was not convinced that her curvature has truly increased 10 degrees in the last 6 months.  He said there can be as much as 7 degrees of measurement error between x-ray images.
• He said that even at 54 degrees, he would classify her curvature as moderate, not severe, and that he only recommends surgery for 4-year-olds if the curvature is severe.  He said he would consider 75 to 90 degrees as severe.  This means that even if she does increase 10 degrees every 6 months, it would be a year or more before she would move into the "severe" category.
• They took some baseline x-rays.  The doctor wants to see Rachel again in 6 months to get new comparative x-rays to better asses what curvature changes are occurring.
• His basic premise is that doing surgery now will limit future growth in that portion of her spine; as such, it is better to postpone surgery for as long as possible.

Rachel's MRI was today ... waiting for results ...

We got a call yesterday informing us that there was a cancellation for today; so Rachel was able to get her MRI done this morning.

Now we are waiting for the neurosurgeon to read the MRI to see if her spinal cord has re-tethered.

Good news from Lydia's MRI ...

Lydia's neurosurgeon reviewed her MRI from last Friday and determined that, in addition to enlarged ventricles (which we already knew about from the CT scan), she has a mild Chiari malformation (which is common for children with spina bifida) and her spinal cord is NOT tethered.  He said that there is still significant risk that her spinal cord could become tethered in the future, so she will need periodic checkups (semiannual or annual).

This all means that she will not need any surgeries anytime soon!

Medical update ...

Lydia's MRI was scheduled for the end of August, but she was placed on a wait-list in the event of a cancellation.  We got a call last Thursday evening telling us there was a cancellation for Friday morning and asking if we could have her there by 8:15 a.m.  We were able to make that work, so Lydia's MRI is completed.  Now we are waiting for her neurosurgeon to read the MRI to determine whether or not she has a tethered spinal cord or any other issues related to her spina bifida.

Regarding Rachel's scoliosis, because skeletal back surgery (or lack thereof) at such a young age can have profound future implications, and because every scoliosis case is unique, we would like to have another pediatric orthopedic specialist review her case before we decide for sure what to do.  We are strongly leaning toward the surgery that her primary ortho doctor recommended (removing a hemivertebra and fusing two vertebrae), but it's a bit scarey to think about her having rods and screws or what-not attached to her spine at such a young age.  So we want to gather as much info as we can before proceeding.  We are currently trying to get her in to see a specialist at Texas Scottish Rite Hospital for Children.  They are exclusively a pediatric orthopedic hospital in Dallas.

Also, Rachel's neurosurgeon is concerned that her increased spinal curvature could be an indication that her spinal cord has retethered.  As such, he has ordered an MRI so we can be certain.  We are awaiting the scheduled date for that, but are hoping that she will be able to get in early via a cancellation.

Disappointing report from Rachel's orthopedic surgeon ...

Rachel saw the pediatric orthopedic surgeon today.  The curvature in her back has increased from 43-degrees to 53-degrees in the past six months.  As a result, he is recommending surgery.  He would prefer to hold off on surgery until she has grown more; however, given the fact that her scoliosis is congenital, he is concerned that the curvature will just continue to worsen as she grows.  If we do wait, she will need external bracing in the meantime to try to physically restrain the curvature from worsening.

Please pray for wisdom as we determine what to do next.

Good initial report for Lydia from the neurosurgeon ...

First, we need to rewind a couple weeks.  On June 7, Lydia fell off some playground equipment, hitting the back of her head on a metal bar on the way down.  She immediately developed a large bump on the back of her head.  As a precaution, Sarah took her to the emergency room.

The ER doctor ordered a CT scan to make sure there was no damage from the impact/fall.  The CT scan confirmed that there was no damage.  The radiologist that read the CT did say that she has "mild hydrocephalus".

On June 16, Lydia had her first visit with the neurosurgeon (Dr. Mapstone).  He read the CT scan and said that Lydia has "enlarged ventricles" (Dr. Mapstone reserves the diagnosis of "hydrocephalus" for conditions that actually require treatment via a shunt).  At this point, there is no evidence to suggest that she needs a shunt.  He was very pleased with all that he observed, even to the point of questioning whether she ever had a myelomeningocele (the diagnosis included in her medical report from China).  He said we really cannot tell anything for certain without an MRI (he ordered a complete MRI--we are on waiting list to hopefully get that done within the next month or two).

Lydia seems to be adjusting well ...

Lydia has adjusted well to her new surroundings and her new family.  She seems happy most of the time and has been sleeping well.

Sarah has only had one decent night's sleep since we've been home, though.

We're home!

Sarah's mom and Sarah's brothers and their families all met us at the airport. There was much rejoicing.

We are now safe at home!

Thank you all for the many prayers!

Arrived safely in San Francisco. On the plane, getting ready to leave for OKC.

Arrived safely in Hong Kong. Fly to U.S. tomorrow morning.

(Tuesday) We got Lydia's U.S. visa from the U.S. Consulate in Guangzhou this afternoon. We took a van to Hong Kong. We leave in the morning for OKC via San Francisco.

Can't wait to get home and get back to our new normal. 

Finished with U.S. Consulate Appointment

(Monday) Steve, Sarah, and Lydia went to the U.S. Consulate in Guangzhou this morning while Jonathan stayed at the hotel with Rachel and Caleb.

Everything went smoothly at the consulate and back at the hotel.  We pick up Lydia's visa tomorrow afternoon then take a van to Hong Kong.

Rest of the crew finally made it to Guangzhou....

(Saturday morning) After a very swift trek through check-in and security at Xi'an airport, Steve, Jonathan, Rachel, and Caleb had their flight to Guangzhou delayed for 7+ hours. They finally arrived at the hotel in Guangzhou at around 6 a.m. Saturday morning.

Caught a couple hours of sleep before heading out Saturday morning to go to the ChimeLong wild animal safari park (tickets and transportation had already been paid for and couldn't be refunded, so we stayed with the original plan).

It downpoured rain most of the day but was an enjoyable excursion nonetheless.

Sarah and Lydia arrived safely in Guangzhou! / Xi'an crew visited the Xi'an City Wall

(Wednesday evening) After a delay leaving the gate in Xi'an and excessive times on the taxiways both in Xi'an and Guangzhou, Sarah and Lydia are safe at their hotel in Guangzhou.

Steve, Jonathan, Rachel, and Caleb visited the City Wall in Xi'an (an 8-mile wall around the original city of Xi'an, constructed 600 years ago).  The wall is surrounded by a moat and originally had a drawbridge that was closed up every night.

As a fortification, the Xi'an City Wall is much more impressive than the Great Wall.  It is 40-feet wide at the top (wide enough for a 3-lane roadway) and 40-feet tall.

Here is Steve, Jonathan, Rachel, and Caleb on the inside of the north gate of the City Wall.  The building in the background is the main gate tower, which sits on top of the wall directly above the north gate.

Another view of the main gate tower.

A bride and groom were having professional photographs taken at the inner gate.  (Note the groom's posture.)

After the trip to the City Wall, the Xi'an crew had dinner at a local Chinese restaurant.  Rachel and Caleb sat in the window sill after dinner waiting for a personal tour of the kitchen.

The hostess offered us a personal tour of the kitchen.  We had to wear chef hats while in the kitchen (they let us keep the hats).

Sarah and Lydia are on their way to Guangzhou

(Wednesday afternoon) Sarah and Lydia are headed to the Xi'an airport to fly to Guangzhou.  We made the decision a couple weeks ago to split up at this juncture of our trip.  This way Sarah can take Lydia to her medical appointment tomorrow (Thursday), which has to be done in Guangzhou.  By getting that done on Thursday instead of Saturday, Lydia's TB test results will be finished prior to Monday.  That way we were able to request a Monday appointment at the U.S. Consulate in Guangzhou (which we were granted).  With a Monday Consulate Appointment, we will get Lydia's U.S. Visa on Tuesday and can take a van Tuesday night to Hong Kong to catch a Wednesday morning flight home.

So, why do Steve, Jonathan, Caleb, and Rachel need to stay in Xi'an?  Well, we won't get Lydia's Chinese passport until Friday.  So, the Xi'an crew will stay behind to shuttle her passport to Guangzhou on Friday.  Sounds a bit complicated, but gets us all home sooner.

Sarah's update

Sarah here:

Steve has been doing the blog posting so far.  I have not had a few minutes to sit and type.  Or when I did have a few minutes, I was instantly asleep.  But it is 5:30 in the morning here, dirty laundry is soaking in the bathtub, Rachel is wandering around getting a snack and now is laying back down.  Everyone else is asleep. (I hope, Jonathan and Caleb are in another room, so I am hoping they are both asleep.) 

Things have been going pretty well here.  The first couple of days Lydia has been quiet and sad.  She was in an orphanage with relatively very few kids, so I think she was very loved and cared for.  I think she is greatly missing her old family and totally does not understand why she is forced to be with these weird looking people who don't even know how to speak correctly.  She has alternated preferring me or Steve.  The first day she would not look at Steve.  Yesterday she cried every time I walked close to her.  I fed her dinner though, and held her as she went to sleep. 

I was really praying that we would begin to see the real girl, that she would begin to be herself.  Well last night I was doing something like washing dishes and I heard her laughing in the other room.  Jonathan was playing with her and she was just cracking up!  All evening she was happy and acting like a two year old (like pushing the dvd player screen down when the others were trying to watch it).  She still tried to hide behind Jonathan when I got close, but we are getting there! 

She eats like a champ, pretty much anything.  She has been well fed!  She is rounder than Caleb or Rachel. 

As for physical problems, I am still worried about hydrocephalus, not because of anything I am seeing except a large head, I am just going to worry until we get home and have a ct scan.  She is walking very well.  However, Her eyes are not tracking correctly.  We had seen this in some pics, but did not really have any info about this except that "it is not a problem."  So, it is not a problem, she sees and functions, but something is definetly going on.  They do not track together all of the time, most of the time.  Sometimes they look like they are working together.  A little I have learned about this is that I think it is treatable and it might be worse when she is tired, so I presume also when she is stressed.  So maybe it will improve a little as she is less stressed being with us, but we will just have to find the right dr to help figure this out.  A new specialty that we haven't visited with yet to add to the list of specialists we know now.  

We are not doing as good a job taking pics this time.  Each one of us has a kid in our hands or arms all the time so it has made pic taking more difficult.  I am still glad we brought the little ones even though it is hard.  It would be so hard worried about them at home without us.  This trip was never meant to be a vacation........

More pics to come.  Thanks for praying for us and following along. 

Terra Cotta Warriors in Xi'an ...

On Tuesday, we were able to visit the excavation site of the Terra Cotta Warriors.  These are life size warriors that were made of clay about 2,200 years ago by the first emperor of the Qing dynasty.  Every face is unique.  About 6,000 warriors have been excavated and reconstructed (only one of the 6,000 was completely intact).


Here is Jonathan next to a replica of a terra cotta warrior and his terra cotta horse.

Here are a couple pix of the excavations with the reconstructed warriors.

Here is one of the seven "generals" excavated from the site.

 Here is Jonathan posing as a terra cotta warrior.

Here is Rachel as a terra cotta warrior.

After such a long day, Lydia fell asleep on our way back to the hotel.

Civil Affairs appointment ... it's official!

We had our Civil Affairs appointment this morning (Monday) -- our adoption of Yang Rui Xue (now Lydia Ruixue Trost) is official!


Here is our picture with the notary after signing all the documents.  BTW, his shirt says, "I've lost an electron.  Are you positive?"

Here is Lydia getting her footprint taken for the official documents.

Gotcha Day!

Happy Mother's Day!

We met Lydia at the Civil Affairs office in Xi'an at about 5 pm local time.

Lydia was very sad to be saying goodbye to the nannies who have cared for her for her entire life.

She cried a lot, but calmed down a bit, then fell asleep during the 45-minute drive back to the hotel.

She has been doing better the last few hours.  She had some fun playing with Caleb and Jonathan this evening (Rachel was asleep).

We were able to Skype with Silas this evening so he could meet her.  Rachel just woke up a few minutes ago (just as it was time to lay Lydia down for the night).

We leave early tomorrow morning (Monday) to go back to Civil Affairs to finalize the adoption.

Arrived Xi'an!

We arrived in Xi'an a few hours ago and are checked into our hotel.

We will be traveling to the Civil Affairs office in a few hours for Gotcha Day!



In Beijing, we had to take a bus to the other side of the airport to board our airplane.

 

Our plane at the gate in Xi'an.

  

Rachel and Caleb were glad to be back on the ground after a particularly turbulent flight.

The Great Wall and Olympic Park ...

Steve and Jonathan went sightseeing on Saturday.  They visited the Great Wall,  a Jade "factory" and Olympic Park.

Jonathan wanted this ship made of pure Jade.  It only costs $62,000, but that includes free shipping!  It took the craftsman 3 years to make it.

Arrived Beijing!

Here is Rachel in front of the plane we took from Chicago to Beijing:

Here is a Mother's Day exhibit in the Beijing Airport.  We will get Lydia on Mother's Day!

In Chicago, waiting a couple hours before we board our flight to Beijing ...

Apparently it's more fun waiting under the seats.

And we're off......almost

Storms in OKC last night moved our flight to later in the morning which was too late to catch our flight to Beijing.  So we are leaving through Tulsa (same distance from our house as okc) and going to Chicago to Beijing.  The fun part is that we get to meet in person 2 families that I have "met" on fb and travel with them.  More to come, just wanted to give an update while I am not sleeping in my house. 

Sarah's version

Soooo.........I have been thinking I need to make a blog post and put it on facebook for quite some time, like since January!  But I don't really have much time to sit at the computer and come up with a coherent post.  So please read Steve's very ridiculously over detailed post (  http://trostadventures.blogspot.com/2015_03_01_archive.html )   if you are a detail person.  To read my short version, first you need to go to you tube and play this song as you are reading: 

https://www.youtube.com/watch?v=cih0btgJw8s

The chorus of this song has been our theme song at our house.

So yes, we are adopting another baby!!  We are excited. And we are leaving to get her in the next few weeks.  And we are taking everyone to get her except Silas and David.  And the dogs and cat, they are staying home.  So we are mostly crazy.   Every scenario that I have played out in my head for travel is hard, so that is where we are right now. 

I am mostly sure we have decided on naming her Lydia.  The 4th and 5th pics are from last week that we got in an update. 

 I will try to do a better job updating.  All prayers for us and this baby girl and travel plans and graduation are appreciated!!!