The Results Are In

Thanks to everyone who has prayed, messaged, text, and called to find out how our follow-up visit for Cheyenne went today. If I didn't answer or respond, please know that I truly appreciate you thinking about us. It's just that the news and plan was very overwhelming and I lacked the energy to tell the story multiple times.

After their review of all of Cheyenne's Stereo EEG data, brain mapping and biopsy results, the Epilepsy team has determined that at this time, Cheyenne is not a good candidate for brain surgery. Here's why:

The EEG data showed that two electrodes were firing simultaneously when Cheyenne has a seizure. However, these two electrodes are on opposite ends of the left hemisphere and therefore there is not one specific area that can be removed to prevent seizures. Also, the results showed that her EEG data is always abnormal - even when she is not having a seizure. In fact, her neurologist said that he believes the only chance she has to becoming completely seizure free is to have a complete hemispherectomy. That is where they completely disconnect the two halves of the brain. That of course would have very significant permanent side effects. It is because of the permanent damage that such a large procedure would cause that the surgery team is not willing to do it until we have exhausted all other possibilities.

We have been fighting the medication battle for over a year and a half. We have been through multiple medications and even if/when the medication works, the side effects are terrible. Some have caused aggression, some have caused extreme fatigue and all cause cognitive delays. Also, currently she is taking two different meds and her seizures are still increasing in frequency and intensity. We NEED to do something different. So for now, there answer is to implant a device called a Vegus Nerve Stimulator (VNS). The VNS functions like a pace maker for the brain. It gets implanted in the chest and an electrode wire gets wrapped around the Vegus nerve. It will send electrical impulses to the brain at intermittent times and durations based on how the doctor programs it. The science behind it is that these electrical pulses cause just enough disruption in the brain waves to prevent seizure neurons from gathering and firing. Statistically, the VNS has reduced seizures by 50% in over 50% of the cases. Also, another benefit is that if/when a seizure does occur, you can use a special "magnet" to swipe over the device and instantly stop the seizure. The hope is that we can eventually decrease her meds and alleviate a lot of her cognitive delays by eliminating a lot of her seizures.

The doctors want us to try the VNS for about a year to two years to see if it helps. If it does, great. But if it doesn't, then we will need to seriously consider the major surgery. The VNS can take anywhere from 3-6 months to become "therapeutic" enough to work. So in the meantime, we will be changing her meds (again) and also adding CBD oil (medical marijuana). And before you ask - No, you can't have some, and No, we're not taking it too? 😉Besides, when I made a joke about taking it too, the Doctor said to me, "Unfortunately, the chemists have found a way to suck all the fun out of it!" LOL. But seriously, the doctor said with kids the CBD oils either work miracles or do nothing but there's no real side effects, so it's worth trying because it won't cause any harm and we may get lucky and be on the positive side of the fence.

Cheyenne will have the VNS implanted on 2/28. The surgery is pretty simple and a lot of times is done as an outpatient procedure. But Childrens wants her to stay overnight one night for IV antibiotics and to ensure she doesn't have any complications. She will have to spend one night in the hospital and miss about two weeks of school just to give the incisions time to heal and prevent risk of infection.

And the Hits Just Keep on Coming

On Tuesday the docs had told us that even though we had't seen any obvious seizures, they were picking up a lot of seizures on the EEG. They were feeling pretty confident that she would be a surgical candidate and had even told us we could likely go home on Saturday (three days early). As good as that news was, I told Kev that I would feel a lot more confident if she had at least one "good" seizure - one that I saw. Well, I guess that's why they say you should be careful what you wish for because yesterday morning she had three seizures all within a two hour period - and with vomiting in between. The doctor came in and decided they had received enough data before starting her back on meds. Since she had multiple seizures in such a short period of time, they wanted them to stop. He also shared with us that during those big seizures, multiple electrodes were firing at once. So it's hard to tell if those seizures are starting at one point and spreading super fast or very wide-spread seizures that start all at once. He will need time to thoroughly examine the EEG data to determine.

And then last night, the surgeon came in to deliver some scary news.

Now they want to do a biopsy of Cheyenne's brain to rule out a very serious condition called Rasmussen Syndrome. They want to do the biopsy because that is the only way to 100% confirm or eliminate it. They already have the wholes drilled in teh place they will need to do the biopsy, so we would really be remiss not to take advantage of it and do it just in case. However, he can't "squeeze that in" on Friday as he was planning to remove the electrodes on Tuesday, so now we have to wait until our original time slot in the OR on Monday.

They think there's only a low change that she has it - but still A chance...and IF she has it, the only way to "treat" it is to sever both halves of the brain - which you can imagine would present it's own set of challenges to overcome. So then we would be faced with a quality of life vs. quality of life discussion...

And if I'm being honest, I am a complete wreck of emotions. I'm sad and depressed but I'm trying SO HARD not to cry so she doesn't see how scared I am for her. I mean one of us has to be strong! If either of us should be frustrated and crying right now, it should be her. She's the one stuck in a bed for days and days with all kinds of strangers comin gin to talk to her and make her perform silly tasks over and over. She's the one away from her family, her school friends, her toys, her pets - but SHE is handling it very well. She only voices the occasional complaint of "I want to go home." She is a trooper.

And Lord help me, that right now the ONLY thing keeping me from losing my mind is that I know - without any doubt- that she would be dead if she was still in China.

And on top of all of this - we have the scary stuff with Faith going on too. Tomorrow morning we have her first appointment with the neurologist AND with an oncologist. The only bright side is that we were actually able to miraculously get copies of her MRI scan done in China. I received them yesterday and have shared them with Chidren's...so hopefully they will be able to tell us more tomorrow. we could REALLY use some good news.

So please keep praying for BOTH our girls. 

Fear Can’t Reign in a Heart that is Full of Gratitude

Here we sit in the waiting room of Children's Hospital while our daughter is having the first of multiple brain surgeries. I thought I was doing okay with everything until the car ride here...that's when the lump that's been living in the back of my throat grew about four sizes. Everything suddenly seemed so scary.

When the anesthesia nurse came in, she told us they would not be able to have us stay with her while they put her under due to it being a sterile environment. This was the first time since we've had Cheyenne that they weren't able to allow us to stay with her until they put her to sleep. They also said they will need to wake her in the OR to ensure everything is okay. That will be the first time she will awaken after any sedation or procedure without us being with her. That news made the lump grow another size or two.

The doctor (and the assisting physician) came in to talk to us. They said the procedure could take any where between 2.5 hour and 4 hours. Since they are inserting the electrodes into both sides of the brain and they are using a robot to assist, there are many possible delays/technical difficulties they may need to work through. Then once all the electrodes are placed, they have to take her for a CT scan to ensure they didn't accidentally puncture any vessels....yep the lump just grew another two sizes.

Once they took her back, Kevin and I went to the Cafe to eat breakfast but neither one of us really has any appetite. We walked around the gift shop for a few minutes and bought Cheyenne the last remaining Paw Patrol pup she doesn't own. (We buy her a new one with each procedure requiring sedation. So if you know the show, you can do the math.)

So now we are sitting in the waiting room trying to busy our minds with anything other than the unspoken fear we are both feeling.

So instead of letting the fear win, I've decided to list all of the things I'm thankful for regarding this day:

1) I'm thankful we were able to keep Cheyenne healthy enough to proceed. Three out of four of our kids have been sick over the past two weeks, and she was the odd one out...

2) I'm thankful that Kevin and I are both healthy and therefore able to both be here together.

3) I'm thankful the surgeon and staff are healthy and therefore able to perform the procedure.

4) I'm thankful for the upbeat music playing on my drive in this morning. It was the only thing keeping me from crying.

5) I'm thankful for the flexibility of both our employers, especially mine. My boss and coworkers have been great in supporting me through all of this, even when it means they have to carry heavier loads.

6) I'm thankful that we live very close to the #2 Children's hospital in the world (any honestly, they should be #1). It gives us peace of mind that we likely wouldn't have elsewhere.

7)  Oddly, I'm also thankful for the brand new iPhone watch I just bought yesterday. Twice in less than two hours, it has sent me a notification reminding me to breathe and telling me how a good deep breath can help to reduce stress...maybe someone can tell me if this is a "normal" message or if it's really smart enough to know how stressed I am this morning. :)

8) I'm thankful for our other kids being so "self-sufficient" that we are able to spend this time getting Cheyenne the care she needs without having to overly worry about them as well.

9) I'm thankful this week has fallen in our nanny's winter break from school and how awesome she is with helping our family and entertaining the other kids.

10) Most importantly, I'm thankful for the huge amount of outpouring love and support we're receiving from friends, family and coworkers. Whether it's an encouraging text, offering to bring food to the kids at home, or simply an ear listen, it means so much.

Even though they took her from us about 7:35 this morning, they just now (10:35) gave us an update that she went to sleep fine and they just got the robot in place...which means even though we've been waiting for three hours, they are just starting the actual procedure.

Lord, please be with the surgeon and staff as they proceed. Please guide his hands and help ensure proper placement. Please be with Cheyenne and keep her safe. Amen

I will try to write another update later this afternoon or evening. In the meantime, thank you all so much for keeping our girl in your thoughts and prayers.

Prayer Warriors Needed

Last July when the doctor gave us the official diagnosis of Epilepsy for Cheyenne, it took my breath away. And earlier this year when they determined that her particular type of Epilepsy has less than a 3% chance of ever being controlled with medication, I thought things couldn't get much worse...but last Friday, it did.

The day we met Faith we noticed she has a subtle head tic. It occurs almost all the time but is even more pronounced when she is stressed. This, in addition to her head circumference measuring in the 97+ percentile (compared to height and weight below the 10th percentile), had the International Adoption Clinic doctor (Dr. Staat) concerned enough to refer us to a neurologist who specializes in Movement and Tic disorders. Knowing the neurologist would want an MRI, Dr. Staat proactively ordered one. The MRI was done on 12/26. We didn't expect to get any information about it until our appointment with the neurologist next week. So imagine my surprise when I answered the phone last Friday morning to hear Dr. Staat's voice on the line.

Dr. Staat knows us well. We started working with her and getting to know her very early on in our adoption journey to Cheyenne in 2016, when Dr. Staat reviewed Chey's Chinese file with us. We worked with Dr. Staat after bringing Cheyenne home. Dr. Staat also spent a good deal of time working with us on the file of the little girl we ultimately had to turn down because of new medical results Dr. Staat uncovered. She reviewed Faith's file and when we brought Faith in for our post-adoption appointment, it felt like reuniting with an old friend when we were with Dr. Staat.  I say all this to help you understand that she knows us and we know her well enough to know when something feels "off".

I had that feeling from the moment she started talking and how she seemed so hesitant to say whatever it was she was trying to say. She asked me if I had read the MRI results on MyChart. I explained I had but didn't really understand what it all meant. I knew something was not good because I did read that they wanted to do another scan in 1-3 months, but we went through that with Cheyenne, so it didn't scare me too much. Dr. Staat went on to explain the results to me. She was using big medical terms (like neoplasm) that I didn't understand. Again, I could tell she was choosing her words wisely in an effort not to scare me, which of course was scaring me. When I asked her to just "give it to me straight", she said the words no parent ever wants to hear - CANCER! For a few moments, the whole world came to a screeching halt. Dr. Staat went on to explain that they see something on the scan, at this time they are unsure of what it is. They listed three possibilities, but neoplasm (cancer) was one of the three possibilities. She told me that as soon as she read the results she contacted the on-call neurologist who also read the results and reviewed the scans. Together they determined that while nothing seemed to be emergent, we should change our appointment from the Movement & Tic disorder doc to a different neurologist, specifically the neuro-oncologist. The new doc they want us to see if off until tomorrow. Dr. Staat told me that she would personally call that doc tomorrow to request for her to see us as soon as possible. But for now, all we can do is wait.

I asked Dr. Staat to level with me and give me the best and worst case scenarios, recognizing that she herself is not a neurologist. She told me that best case scenario was that whatever this lesion is they see is nothing. It's a benign infection or something that can clear up on its own and no harm will come. Worst case scenario is that we discover it is cancer and have to treat it in the same way as any other cancer is treated - with chemotherapy. What's worse is, because it is in the brain, the chemo could alter the healthy parts of the brain surrounding it.

Dr. Staat asked me if Faith ever complains of headaches, seems overly tired or vomits. I told her no and in fact, she seems extremely "normal". Dr. Staat agreed those were all good signs and attempted to reassure me that this is just one potential diagnosis and to not panic. And we're trying. Some days we do well, other days (mostly quiet nights), I'm in tears thinking and praying about it.

In the meantime, we are attempting to gain copies of an MRI that she had done in China (2.5 years ago). Our agency says it's a long shot but they're trying.

Not that news like this could ever come at a "good" time, but as timing goes, this is at least a time when we're very distracted with other concerns. Cheyenne goes in at 6:00 Monday morning for her Phase 2 Epilepsy testing. She will be in the hospital until 1/15 and I will be with her pretty much the entire time. This will have me/us worried enough to hopefully not worry too much over something we have little information on.

These days, the thing that gives me the most hope is the reminder, we named her "Faith" for a reason...we need to have Faith Over Fear - now maybe more than ever.

We know God has a plan but many times it's really hard to trust in Him. Please pray for healing for both our girls and pray for strength for us.

S.U.D.E.P

Cheyenne got diagnosed with Epilepsy about 18 months ago. In that time, we have certainly learned a ton of new vocabulary. Words like "intractable" (when medication doesn't stop the seizures), "cluster" (3 or more seizures in a 24 hour period), "Post-Ictal" (time immediately following a seizure where the person is responding but in a state of confusion or incoherence), "Clincal seizure vs. seizure" (Clinical is when we can see outward signs/symptoms. Seizure is in the brain only with no outward signs/symptoms presenting) and "bridge medication" (an extra medication (like Ativan) that is supposed to halt seizures after you've experienced a "cluster"). Of course there's also all kinds of new words or tests/scans I had never heard of like Stereo EEG, Diastat/rescue med, PET scan, MEG scan and Ictal/Post-ictal tests. Of all the words we've learned, the scariest is actually an acronym: S.U.D.E.P. This stands for Sudden Unexpected Death in Epilepsy Patients. This is a lot like SIDS, but annually takes more lives than SIDS. They claim that children are less at risk of S.U.D.E.P than adults, but I have a friend who has not one, but TWO, other friends who have lost their children to S.U.D.E.P.

Ever since I heard that word, I have lost sleep at night. I installed a "nanny cam" in Cheyenne's room that I can view on my phone. I watch it religiously when she's in bed. And every morning, when I go to wake Cheyenne up, I will literally hold my breath and say a prayer until I see her squirm as I turn the light on or see her move/breathe as I walk in. EVERY.SINGLE.MORNING....

When we got discharged that Friday from the EMU back in August, a nurse called me about an hour after we got home to tell me the doctor had called in a "bridge medication" (see definition above) for her to use over the weekend. This surprised me because that morning when they discharged us they told me they hadn't seen any seizure activity since the one that occurred around 3:00 Thursday afternoon. When I asked why they called it in, the only thing the nurse told me was they "saw something on the EEG from that morning they didn't like". (Thanks, that's very helpful - not). Later that week, I had Chey at the hospital for yet another test. While waiting in the lobby I saw one of her doctors from the EMU walk past. I said hello and he came over to chat for a minute. In that conversation he told me that on the EEG for the two hours before we left, her brain was "seizing" every 20 MINUTES. So even though I didn't see her have a "clinical seizure", she was seizing a lot. That did not help my sleeping habit one bit!

Following the EMU stay in August, they changed her meds and we thought we were on one that may actually work. She didn't have a seizure for over 2 months. That was the longest time period since her diagnosis. We knew the trip to China and back would throw her body for a loop. What we didn't expect is how badly.

About two weeks after we got home from China, (the Thursday prior to Thanksgiving), Cheyenne started having a seizure a day and twice on Sunday (no pun intended). The Monday of Thanksgiving week, we started another bridge medication...but this time it didn't work. Not only did she still have seizures while on the bridge, but she had one of the longest seizures of that week. We had been in regular contact with her neurologist and at first they were hesitant to do anything differently because of her upcoming Phase 2 testing (January 7th). But when even the bridge didn't work, he decided to increase her meds. Overall this helped for about a week or so but then yesterday she had three seizures within four hours. We took her to Children's ER. At first they were only going to put her on yet another bridge and send her home but I cried and told them I really wasn't comfortable having her home overnight with the frequency so high. I explained my fear of S.U.D.E.P and convinced them to admit her overnight for a video EEG. She had another seizure about an hour later and has had at least three seizures this morning (even after they started their bridge last night). Fortunately, the EEG showed no seizures overnight while sleeping so they reassured us that she is safe to come home today.

I plan to call her neurologist first thing tomorrow and discuss everything with him and/or have him see her ASAP. I'm scared to death that something has changed in her brain and really want them to do another MRI. Even if it's the same, at least I'll have piece of mind about that part. We'll see what happens.

In the meantime, I thought you all would like to see a picture of her Neurosurgeon. When we were scheduled with a Dr. Jesse Michael Skoch, I didn't expect an old man as I believed "Jesse Michael" was a pretty young name. But I did not expect him to be younger than me! He was super nice when we met him and is clearly VERY smart. (I guess you don't get to be a brain surgeon without being super smart.) But this guy, put off part of his medical school so that he could lead research studies at Harvard and Children's has given him his own lab so that he can research and test the ability to use thermal imaging to detect seizures, brain activity, etc. (These pictures actually make him look older than he does in person.)

Dr. Skoch will be admitting us on 1/7/19 for her Phase two testing (as noted in my previous blog). Until then, we will keep monitoring her and hopefully able to get a bridge to work to keep the seizures at bay for the rest of the year.

For now, please keep praying for Cheyenne. Because right now, the only thing giving me reassurance is the hope that she could be seizure free by her 10th birthday!

Language Barrier

I've been asked several times lately about the challenges of adopting a child who speaks a different language. Of course, in addition to the other obstacles I've written about, the language barrier certainly doesn't make life any easier, but it's really not as bad as most people imagine.

Did you know that in any verbal communication, only 7% of the message is conveyed by words? Yep, according to 'Psychology Today', it's only 7%! The rest is tone of voice (38%) and body language (55%). This means that the majority of all of our verbal communication is through body language. If you think about this for a minute, you will agree. For example, how many times have you or your spouse said to each other, "It's not what you said...it's HOW you said it." That philosophy certainly helps ease a transition when people don't know the same words.

Smiles, hugs, tears, the "come here" motion, the famous "I have to go pee pee" dance/motion and even the sshhh motion seem to have the same meaning in all languages. That might be enough to get by with a young child but with older child adoption, it is important to know at least a few key words or phrases. In my case, I learned how to ask "Are you hungry?", "Are you thirsty?", "Are you tired?", "Are you scared?" and of course "I love you." in Mandarin. Kevin learned to speak Mandarin very well. He will tell you that he only learned enough to communicate with a child, but that's an understatement as he has held his own in plenty of adult conversations while in China. This helps tremendously when he is around, but when he is away, I have to rely on my own understanding of our girls' body language, and show them mine to get the most out of our time.

For example, when Faith wants to show me something, she just carries it over to me and says "Ka, mommy". It's not too hard to figure out that she really means "Look, mommy." So I smile and give it the due attention but then teach her to say "Look, mommy" instead. Once I know she understands, I slowly stop answering to "Ka, mommy" and only answer to "look, mommy". If something is too large for her to carry over to me, she will simply come to wherever I am, grab me by the hand and pull/lead me to what she wants to show me.

Fortunately (and sometimes unfortunately), kids are little sponges and they learn very quickly. It only takes me asking once or twice "Do you want a drink?" (while pointing to a cup) for them to learn and know what I'm asking and then in turn, they will come ask for a "drink?" when they are thirsty. 

Each day gets a little easier. She learns a few more words and I learn a few more of her phrases. When all else fails, technology also helps. There are many translator apps that will even allow you to push a button and have a conversation in two different languages.

I will admit, there has been more than once when Faith is being a little chatter box in Chinese. When she's talking so fast that I can't even make out the few key words I know to try to decipher what she's saying...in those moments, I just smile, nod and agree. In those moments, I can only hope that she's also not calling me all kinds of bad names...but again, reading her body language helps makes me feel better about that too. I figure since she's only six, she's likely not asking for a trip to Europe or telling me some super top secret mission launch codes. 😜

Progress in the Making

Sunday was a down day where we really just hung out at the hotel and explored around town.

Monday we went to the local zoo. It says it is the third largest zoo in China but we were able to see everything in about 4 hours so... It was super hot and SUPER humid. We all loved seeing the animals, but especially Faith. She ran up to each one and was genuinely awed by them. This is probably my favorite part about adoption - all the "firsts" we get to experience with our new kiddo. We missed their normal firsts like first words, first tooth, first steps, so it's nice to get to experience these other firsts with them. This was clearly the first time Faith had been to the zoo and seen those types of animals up close.

Tuesday was our "Consulate Appointment" (CA). The CA is the final required step in this process. At the CA we have to go to the US Consulate and swear under oath that we will never forsake or abandon the child. We also have to swear that we are adopting the child to raise as our own and not to "sell" them to someone else back home. 😟 This appointment finalizes everything on the American side and most importantly is when her Visa application is finalized. We will be issued the Visa tomorrow (Thurs) afternoon. The Visa will make it so that Faith becomes a U.S. Citizen the moment our plane hits U.S. soil! 😊 According to the Consulate, this particular Visa is the hardest document in the world to obtain...as he said this I was thinking, "No shit, it's taken almost a year to get it, even after you already had the same info on us from the last time!" After the CA, we went to the nearby mall and watched the new Nutcracker movie in 3D - another first for Faith. She did really well with it. Then we had dinner and it was time to meet our diver who was taking us to the River Cruise. As we were getting into the van, Faith grabbed a seat on the outside of the back row. I was getting in behind her and needed her to scoot over to the inside so that Kev and I could sit there too. I asked nicely two or three times and after she refused, I gently picked her up and slid her over to the inside. OH.MY.GOSH! You would have thought I took her favorite toy away from her. She cried and screamed the ENTIRE way to the cruise! We tried giving her toys to play with, candy, anything and it just didn't work. Fortunately when we boarded the boat, she perked up and had a blast looking at all the beautiful scenery. When it was time for bed, Kevin ran an errand to go buy bottled drinks for our day today. While he was out, I tucked Cheyenne in to her bed (in the couch), had Faith give her a good night hug and took Faith into our room to climb into bed. Once she was lying down in bed, she started crying silent tears. This was pretty out of the blue and she wasn't mad about anything. I tried to lay down next to her, rub her back and talk to her. I asked her why she was crying (no answer). Soon after, Kevin returned and I explained everything to him. He asked her again why she was crying and she replied "I don't know". This is grief - mixed with over-stimulation! Poor thing was exhausted. She was back to not wanting me anywhere near her and only wanted her daddy. Once she fell asleep, everything was ok but this broke my heart.

Today we went to Chimelong Paradise. This is a large amusement park with all kinds of rides. We only went for a half day because we didn't want to overstimulate Faith again. The boys and Cheyenne went to ride the "big kid" rides with my mom and Kevin and I stuck to the rides Faith was tall enough to ride.We all had a great time. Faith was such a dare devil. She was pretty happy the whole day except after about every other ride she would see a big kid ride and say (to Kevin in Chinese of course), "I want to ride that one." When he would tell her she was not tall enough she would stomp her foot and cross her arms and pout. EVERY.SINGLE.TIME! 😂 Fortunately, it only lasted until we came up to the next cool ride where she was tall enough. I got the pleasure of riding her very first roller coaster with her and then she gave Kevin her big beautiful brown eyes and asked him to go with her on the water ride...which he agreed! He HATES water rides and I'm pretty sure even his Princess Cheyenne hasn't been able to get him on one, but he willingly agreed to accompany Faith and I on the ride. We came back to the room and gave the girls a nap. While the girls napped, Kevin helped the boys with their homework and my mom and I went down to the bar to have a few drinks and play cards. That was a lot of fun too, mostly because my mom  got trashed and was hysterical! Fortunately, she kept her clothes on! 😉 Once the girls were up for a while it was time for dinner. Right before we went to dinner, Faith came up to me and gave me a hug - all by herself! Once we were back in the room, I gave the girls a bath. While the bath water was running we had an all out tickle fight. They LOVE, LOVE, LOVE taking baths together and splash around and have a great time together. While they were in the bath, Faith says, "Mommy?", I looked over at her and said "Yeah baby" and she said "Wo Ai NI" with a big smile on her face! Oh my goodness, I almost cried. When it's time for bed, she'll probably be back to only wanting daddy, but at least we're making progress.

Tomorrow morning we will pack up everything and get ready to go home on Friday! YEY!!!! We will pack in the morning and will go to Shamian Island for some site seeing and dinner tomorrow afternoon.

We will be picked up to go to the airport at 8:00am Friday morning. We will fly home all day on Friday. I may get the opportunity to write again, but I may not. So, if not, please wish us well on our journey home - not only for safe travels but for traveling with a little girl who 1) has never flown before and 2) does not seem like the type to happily sit ans watch movies for 14 hours. :)

Update - November 3, 2018

The past few days have been a whirlwind. Nothing too exciting has happened but a few people have asked for updates, so here goes:

Wednesday and Thursday were "free" days in Nanning, meaning no adoption related events were occurring and we could do some site seeing. On Wednesday our guide took us to us to a beautiful park. I had wonderful scenery and a "children's corner" that we thought would be a playground but instead was an area with a handful of carnival type rides. We let the kids ride several of the rides and the bought the boys each a foam airplane and the girls each a plastic helicopter type toy. The kids payed with their toys for an hour or so. As I mentioned in my previous post, Faith had a good time throwing the plane to me and having me throw it back to her. At one point we had a bathroom break where we had a water fight with each other as we were washing our hands and it was big fun. Then, just a few minutes later, Faith started crying when I asked to hold her hand as we were leaving.

Thursday our guide took us to the "mountain". We rode a tram up to the top where there stood a giant tower which overlooked the entire city of Nanning. It was nine stories tall and between each floor was a narrow spiral concrete staircase. The boys took off and were out of sight. Mom, Kev and the guide opted not to climb the tower, leaving me to fend with the two girls. Going up was fine and we had no issues. Once we reached the top, it was a gorgeous sight. At one point I picked Faith up to try to show her some of the scenery. Well she was pretty sure my plan was to throw her out the window! She screamed bloody murder until I put her down. Then, when it was time to climb down the staircase, Faith was Pissed (with a capital P) that I made her hold my hand on the way down to make sure she didn't fall and smack her head on the concrete steps. Then, at one point, she attempted to jump from the third step up down to the floor and when I stopped her you would have thought I was the meanest mom in the whole world the way she screamed and cried and carried on. I tried to pick her up to comfort her and that was the way wrong answer! I'm pretty sure the other Asians walking up and down thought I was attempting to kidnap her. When we finally made it to the bottom, I happily handed her screamy butt over to daddy.

Friday we took the bullet train from Nanning to Guangzhou where we will get Faith's American Visa. When we met our guide in the lobby, she told Faith that I had the train tickets so she had to make a decision, did she want to go with Mama on the train or did she want to stay there. (This was a risky question that we didn't know she was asking until afterwards when she told us.) Fortunately, Faith agreed that she would rather go with me than stay there. She willingly sat by me on the train and even fed me a few gummy bears.

This morning we were scheduled to take Faith to her medical exam. All adopted kiddos have to get a medical check and a TB testif they are over 2. The medical consists of a height/weight check, a vision screening, an ENT screening, a general exam and a blood draw for the TB test. We are allowed to stay with the child the whole time EXCEPT when they are sticking them with a needle.

When we met our guide this morning to leave for the medical appointment, she told Faith once again that we are family and mama loves her and does she love her mama (no). Then she asked her why she doesn't like her mama (I don't know). It's ok, I know. And I know it will come in time...but that didn't stop me from wanting to be the one who comforted her when she came out of the blood draw room. Kevin and our guide sent her into the room and then left the immediate area and went and sat around the corner. I was waiting outside the door with a sucker in one hand and her Play Doh in the other. She came out all teary and upset. She did come right over to me, took the sucker and even let me pick her up - just for a minute, but immediately asked for Baba. I didn't want to cause more trauma so I quickly walked her over to Kevin and he hugged her and I handed her the tablet. This really helped calm her down.

When we were back to the hotel it was time to meet our "shopping guide". Today is Casey's 12th Birthday. Since he was originally disappointed to be spending his birthday in China, I arranged for a special guide to take us to the "Toy Market" and let Casey pick out his own birthday present. That cheered him up. We shopped our butts off today. We got toys for each of the kids and pearls for the girls to wear on their wedding day. Turns out, it may be possible to buy my way into Faith's heart because as we were shopping, she actually gave me a hug, kissed me on the check and when I said, "Mommy ai ni." (Mommy loves you), instead of screaming "No!" and shaking her head, she actually said "Wo ai ni" (I love you). She still very clearly prefers daddy but today seems like a little progress was made.

We just got back from a very nice dinner to celebrate Casey's birthday. We are letting the girls play a little before calling it a night. Tomorrow will just be spent relaxing by the pool and having a day of rest.

Please keep praying for Faith's heart (and mine).

The Hard - Mommy version

Many people outside the adoption community don't know that the child isn't the only one who suffers. Most people (even I at one point) have this fantasy about adoption and how you're doing this great and noble thing by saving a child. Most people can understand how the child experiences grief and loss - especially with international adoption. But what most people don't realize is how the parents and even other siblings can experience grief too.

In order for any adoption to take place, great loss has to occur. It starts with the child being abandoned. The child grows in it's mother's womb and hears her voice for the entire length of the pregnancy. And in some cases, especially in China, the child is not abandoned until they are months or even years old. In those cases the child even gets to know it's mother's smells, mannerisms, etc. Then - all at once - she's gone. And an institution is not a nurturing environment.

In the case of international adoption, the child is adopted by people that don't look like them, don't smell like them and don't speak the same language as them. Also, institutionalized children are often very sheltered and do not get to experience even the small things we take for granted - like riding in a car or being surrounded by people wanting to give you attention.

When we understand all the child is giving up and all the overwhelming feelings of fear and loss, it's easy to feel sympathy when they are crying or even when they act out. This is all part of the grieving process.

In Faith's case, she wasn't abandoned until she was approximately 4 months old. Giant loss! Then she lived in the orphanage for four years until she was placed in the first foster home. Another loss! She lived in that foster home for about one year and then was placed in a different foster home. Great loss! She lived in the second foster home for about one year and then was moved to yet another foster home. Another great loss! She only lived in that third foster home for about 2-3 months before we came to adopt her. Another loss. And with each of these losses, there is one commonality - it always involves a "mama". Even the nannies in the orphanage are often called "mama". So in Faith's case, she has been "abandoned" by at least FIVE different women between me and her birth mother. When I stop to consider this, it's heartbreaking. When I think of this with my logical brain, it all makes sense why she would be hesitant to attach to yet another woman.

Unfortunately, I was the one who picked up Faith and allowed her foster mother to leave on Monday. She was screaming and crying and all I wanted to do was attempt to comfort her. But looking back, it may have given her reason to believe all of the fear and grief she is feeling now is all my fault. Also, since she has already been hurt and abandoned by five other women, it's very possible she believes I will be just one more in the line of women to reject her. All of this combined has caused her to just short of completely reject me.

She has no problem playing with the kids, holding their hands, riding on Nathan's shoulders or piggy back on Casey. She will willingly go to Kevin, and even my mom...but for me - nothing! She will let me take her to the bathroom and help her wash her hands. She will let me change her clothes and bathe her, all the things she's used to nannies doing...but when it comes to playing, snuggling or bonding, I get nada! (But apparently her sub-conscience like me because she will snuggle with me in her sleep). If I ask her for a hug she adamantly says no and sometimes will even go as far as to walk away and give someone else a hug instead. She screams and says no any time I try to hold her in my lap unless I bribe her with a game on my phone or her tablet. If I try to give her food she rejects it but will eat the same food if given by Kevin.

When we adopted Cheyenne, she clearly had a preference for Kevin but didn't push me away. She was affectionate when asked and would let me play with her. With Faith, it feels very different. It feels like she HATES me. Again, when I use my logical brain it all makes sense. But unfortunately, the rejection hurts and it is near impossible not to take it personal. And it hurts like no other hurt I have ever felt! Even though it's only been a two days, it all came to a head yesterday and I spent the majority of the day sobbing. Even our guide tried to talk to her and tell her that we are her family now and I love her and would never hurt her but she just doesn't believe it yet.

But there are moments of hope. There have been a few moments when she has let her guard down and shown me what a sweet and adorable little girl she really is. Yesterday we were eating ice cream and she willingly kept giving me bites of her ice cream. Today we went to a park and let the kids play with some outside toys we bought for them. She had a good time throwing an airplane toy to me, having me catch it and throw it back to her. She took turns with me, Chey and Memere, but at least she included me. At one point I took the girls to the bathroom and while we were washing our hands, I purposefully splashed a little on Faith and laughed. Then I let her splash me and when Cheyenne joined in and they ganged up on mommy, that was BIG fun....but then not 5 minutes later when it was time to leave the play area and I reached for her hand she broke down in tears again, telling our guide she doesn't want to hold my hand. This was seriously less than FIVE minutes from our fun water fight. So yes, it is very, very hard not to take it personal.

Each time she rejects me, I can feel myself withdrawing from her just a little too. But then in those other moments, she melts my heart and I fall back in love with her all over again. I'm just praying as the days and months go on, those good times start to outnumber the bad. Eventually the kids will go to school and Kevin will go to work and she will be stuck with only me. Is it bad that I can't wait for that to happen?

When my logical brain turns back on, I know it won't be like this for long. I remember the hurt I sometimes felt with Cheyenne and now, she is my shadow. You would think those memories and realizations would make it better or easier but sometimes my logical brain turns off and my emotional brain replaces it.

I just wish there was some way I could take her pain away and convince her that this is one mama she will never lose. I will never abuse or abandon her. I know in time she will trust me and love me. Until then, I'll keep appreciating the good times when her guard is down.

Please continue to pray for Faith's heart (and mine). This too shall pass!

This is our guide trying to convince her that I'm not evil. 

Faith's Final Good-bye

We just got back to our hotel after finalizing Faith's adoption. The world is minus one orphan and Faith is officially the newest member of the Back family!

Last night Faith slept very well, much better than we expected. She seems to be getting used to each of us more today. She ate well at breakfast and didn't have any melt downs this morning.

We were scheduled to meet our guide at 9:15 to go back to the civil affairs office to finalize the adoption and get the certificate of adoption. Kevin and I were dreading this because we knew the Foster mom would be there and we were worried Faith would have to be ripped away from her again like we did yesterday.

Everything went smoothly at the civil affairs center. They interviewed us and asked why we wanted to adopt her. I mean what do you say to that really? We want to provide her a loving home in a country where girls are not thrown away like trash. We want to keep her from being thrown out on to the streets at age 14 to fend for herself and likely go into prostitution or drugs. We want her to know the solidarity of a family and not be passed around year after year like she has been the past 3 years? (We found out she's lived with three foster families over the past two years!)...I though all of those things but simply spoke the simplest of truths - that we fell in love with her the moment we saw her face. From the day we saw that first picture, we just knew she was meant to be our daughter. 

After the finalization of the adoption, we took several pictures. She got teary in some but I believe it was just because it was overwhelming. At this point, her foster mother had stayed out of sight so well I didn't even realize she was there.

When it was all said and done, we asked where her foster mom was hiding. We wanted Faith to have the opportunity to give her final good-bye. We were dreading it but ultimately thought Faith needed the closure. Our guide did a nice job in telling her that we would care for her forever and we were going to say good-bye to her auntie one last time. 

When we found her foster mom sitting in the other room, Faith was very happy. They hugged and they both started crying (and so did I). They said their good-byes and gave a few hugs but then Faith went willingly back to Kevin to hold as we left. Once we were back in the van, she was ok and is now back to happily playing with her big sister. 

 

The Hard - Gotcha (Family) Day, October 29, 2018

I guess if adoption was easy everyone would do it, right? Adoption is hard. The paperwork process is long and hard, the waiting is harder and watching your new baby grieve is the hardest!

With Cheyenne, it was easy. She didn't grieve at all the first several days and even when she did show grief it was short lived. We were worried that may mean it would take her a long time to bond with a family. Thankfully that was not true. As we've come to learn, she was treated so poorly in the orphanage, she just couldn't wait to get away.

We expected this experience to be harder. We knew Faith was in a foster family and we knew this would make it more difficult for her to understand. In her eyes, it is the same as if we are truly kidnapping her. We were hoping that our regular video chats would ease the pain and transition but we were not so lucky.

We got to the civil affairs office today before they arrived. When they came in, she was grins and giggles. She gave all of us a hug. We had to complete some paperwork and she was willing to play with all of the kids but any time Kevin or I would attempt to get her to come to us she would just cling to her foster mother. We knew that would make it tough...and it did.

When we were done with the paperwork and allowed to leave, we stopped outside to take some pictures. I wanted some of the her with her foster mother and the orphanage director and then I was hoping to get some of the six of us. She cooperated as long as her familiar faces were there but as soon as they left, the melt down began. Poor thing cried hard for a solid 15 minutes and was screaming for her "auntie" (foster mom). She kept saying she wanted to go back. We thought for sure she would fall asleep in the van on the way back to the hotel but she was still in flight mode.

Once we were back to the room, she seemed to do much better. We pulled out the play doh and all the kids were playing beautifully together. Later, we left to meet our guide for dinner. When we were back with the guide Faith kept asking again for her "auntie". When the guide told her that we would see her auntie in the morning but she would not be returning with her but instead would be staying with us, a new meltdown ensued. This one caused her to choke on her rice and made us eventually leave to take her outside to try to distract her.  Once we were headed back to the room she seemed better again.

Kevin and Casey went to find some fruit for her because she barely ate her dinner and the orphanage staff told us she normally has fruit for a bedtime snack. While they were gone she needed to go potty. She didn't pull her pants down far enough and I was worried she would pee all over them so I pulled them down to her ankles. She was not happy with this and then the mega meltdown stated. I held her and tried to comfort her but she threw a full on tantrum. Eventually she calmed down and we decided to try to give the girls a bath. When we started taking her shoes off, a new mega meltdown began. She told Kevin (threw her screams and tears) that if her shoes were off, she couldn't go back! :( My heart broke into a million pieces. Once she was in the bath, she had a great time. The girls played and splashed until the water was almost cold. Then I bathed her and put them in the matching PJs we bought for them. She is doing ok now but is still grieving and has moments where she starts crying out of the blue for no apparent reason. She clearly misses her "auntie" and her foster sister.

The good news in all of this is - if she was so well bonded to them, it shows she will absolutely bond and attach well to us. We just have to give it time.

Beijing, China and Mom's Bucket List - October 27, 2018

Well, we made it to China! The flight over was pretty uneventful and fortunately our guide Angela was waiting for us at the airport on Friday afternoon as planned. Most of us were really glad to see her but poor Cheyenne was convinced Angela was there to take her away from us. Poor baby hid behind me and Kevin stuck frozen, in tears and refused to say hello to Angela. I had to kneel down eye to eye and remind/convince Cheyenne that she is ours forever and has no reason to be scared of staying here.

One we finally left the airport, Angela helped us get checked into our room and order delivery for dinner. We were all so exhausted that we really too tired to eat. Casey passed out on the sofa within 10 minutes of getting to the room. We ate a little and then got ready for bed. We were all asleep by 8:00...which was a mistake because I woke up wide awake at midnight and had to fight myself to go back to sleep and still woke up every hour. We all got up about 5:00 when we just couldn't force ourselves to stay in bed any longer.

We had breakfast and our guide picked us up at 7:00 am to take the drive to The Great Wall. With traffic, the drive was about two hours.

Mom was super excited. As long as I can remember mom has always dreamed of seeing The Great Wall. This was the biggest reason we decided to come back to Beijing this time. Originally, (before we decided to invite mom to join us), we were planning to see Shanghai or Hong Kong instead of Beijing. Mom would have been fine with either of those places too but it seemed really silly to drag her all the way to China and not see the #1 item on her bucket list. It was also a great opportunity to let Cheyenne experience some of her birth culture.

We took the chair lift up and the boys decided they wanted to do the "steeper but more beautiful" side and Kevin, mom, Cheyenne and I went to the flatter side. In my opinion it was just as beautiful as the other side but didn't have as many steps. Mom was in awe. We walked from watch tower to watch tower and admired the view. When it was time to go, Cheyenne and mom took the chair lift back down and the rest of us took the toboggan slide down. Mom would have taken the slide but they said she was too old! :) This was just as well because we weren't sure if Chey would understand how to operate her toboggan anyway.

Once back down to the bottom we haggled with the locals to buy some souvenirs and then our guide took us to a traditional lunch. I was a little apprehensive about the lunch because I'm such a picky eater, but it was absolutely delicious!

After lunch we went to Jing Shan Park. This is a park that has a trail leading up to some temples and look outs that overlook the forbidden city. The view was awesome and it was great to show that to mom and Cheyenne as well but we didn't stay very long because it was super crowded and it is not considered rude in China to push/wedge your way into a crowd and the people have never heard of "personal space". We snapped a few pictures and went back to the van.

We convinced the van driver to take the long way back to the hotel so that we could see "The Bird's Nest". This is the 2008 Olympic stadium shaped like a giant bird's nest. It's really cool to see. Plus, taking the long way gave mom an opportunity to truly experience the Beijing traffic chaos where traffic signals and painted lanes are all (apparently) optional!

Once back to the room we played cards and ordered dinner (Pizza Hut of all places). After dinner we were all exhausted again so we went to bed early. You would think we would have learned our lesson the night before but we didn't. We were in bed at 8:30 and back to wide awake at 3:00 this morning. Again, we forced ourselves to stay in bed until 6:00. Once up we packed up our stuff and took a walk in search for the closest McDonald's. According to Siri we were on top of our destination but no Mc D's in sight (Siri hates me so this is no surprise). We settled for a Burger King. We ate and came back to the hotel. Now we're killing time until our guide comes to get us to take us to the airport.

This afternoon we are flying to Nanning. Nanning is the capital city of Gaungxi Province which is the city where we will meet Faith tomorrow. I'm actually trying not to think about it too much because once I do, I'll be a nervous wreck. As of right now we aren't scheduled to meet her until tomorrow afternoon but I'm anxious to see what time our guide tells us. When we adopted Cheyenne we weren't scheduled until 3:00 and when we arrived in her city our guide told us it was moved to 10:00 in the morning.

I will probably write another post tomorrow morning prior to our big meeting. Hopefully that will give me a chance to calm my nerves. You would think the second time around would be less nerving but that is certainly not the case. More on that later as I'm trying not to think about that yet.

Please stay tuned and continue to pray for safe travels and a smooth transition for all of us.