Reason # 3,872

why my family is unique. I used the word unique because we are not strange or weird or even different. We are unique.

Mama: Meimei, lei lei - in Chinese means "Miss K come here.

Two seconds later as she starts to grab something.

Mama: "Nyet" Russian for "no".

One of our first days in China.

Daddy in English: "It is so good to be back here and speaking Chinese."

finishes that sentence and Miss K does something to which daddy says "Nyet."

Yep, speaking Chinese Russian in China.

Since we are on reason #3872 and dealing with the languages spoken here. I will add this story. The other day someone asked Master J in French if he speaks French. He said "no" and the other kids sitting there asked him what was said and he translates, "she asked me if I speak French" He did understand what she said. There might be more French in his brain then I realize.

Miss K Memories - Part 3

Once we had confirmation that Miss K had Down Syndrome my research mode kicked in and I had to know everything I could. Somehow and I really don't know how I found a small friendly group of Homeschooling moms to kids of Down Syndrome. I actually joined that group before she was home from the hospital. That was a wonderful source of encouragement and hope. Woodbine has a number of books that talk about Down Syndrome. It didn't take long and those were on my shelves. One thing that I am thankful for is that we have a name and also for the amount of research that has been done. There is so much that is known and for that I am thankful.

In my research it didn't take long to learn that one of the things that helpful for an early start was therapy or as it is called in the US early intervention. How do I find that in a foreign country? August 12 when Miss K was a month old we went back to the doctor. She was still 6 pounds 1 ounce and I mentioned something about her not really breastfeeding so we were sent back to the 5th floor NICU help. The head nurse quickly said, "she needs therapy". "Yes, I know but how do I get it" was the question in my mind. She called the therapist who came up and evaluated Miss K and gave us some things to do with her. She then told us to come back in a month. She left the room and came back to tell us just bring her in and she will donate her time. So for 2 1/2 years she evaluated and told us what to do next.  God provided a therapist to help. I have a picture of daddy doing therapy but I don't think I will post it. You can tell she did not like it. It was one of those things that was not easy to do but was good for her.

Miss K was very alert and aware of what was going on around. It didn't take long for her to kick her kicking piano and make music.

She used to get mad at her stuffed animals and I think it was because she wanted them to do something and all they did was sit around.

I am thankful for people that were in our life when she was so young. Her doctors, her therapist, NaiNai and Pipaw, Aunt Becki, Auntie LiLin and others.

NaiNai and Pipaw came when we were told that she wasn't going to make it and it was there that she had her first sleepover. Miss K was 2 months old and we did not yet have her passport. Our visa expired and we were not sure what we were going to do but decided to go to Hong Kong overnight and then we would have at least 30-60 days to figure out what we were going to do. Since she didn't have her passport she didn't have a visa that was going to expire so she spent the night with NaiNai and Pipaw.

This was Miss K's 3rd birthday party in PA. Pipaw was working in Maryland that year and so they came up for her birthday.

Aunt Becki was a coworker and friend who lived on our couch. Well, she didn't live there but spent lots of nights there and we loved having her stop by our apartment. Our apartment was centrally located near the church, MRT station and just convenient so Aunt Becki would stop when she had time. Aunt Becki has a nephew with Down Syndrome and has a special place in her heart for children with Down Syndrome. Aunt Beck read lots of books to Miss K and taught Miss K to say "YESSSS" with a cheer like motion and she did it that way for a long long time.

Now Aunt Becki lives on the west coast which is too far away. Maybe Aunt Becki will move here and live on our couch again.

Auntie LiLin was the church secretary and she would call in the afternoon to see if "baby" was awake and would come visit or on our walks around town we would stop by her office if we saw the light on. Daddy knew LiLin when she was a student in Seattle. Mama knew Auntie LiLin before she even met Daddy. I think Auntie LiLin needs to visit because I can't find any pictures of her and Miss K.

There were so many people around the world who prayed and loved her. I am thankful for the people that were there in her life when she was so young I was going to use small but she is still small.

Sewing my way to China

The other day I was in Goodwill. I know I just posted about my thrift store find but this was a different day and a different store. I found a huge and I mean huge bag of thread. I looked at it and since there was quite a bit of Coats thread which is what I like I decided to buy it. When I was checking out the lady commented on the huge bag of thread (it was about the size of a grocery bag) and said "that is enough thread you could sew your way to China." I laughed because we would like to go back this fall and we are trying to save money for that and actually I do have a few sewing jobs that will give me a bit of money which will help.

So I am sewing my way to China. I have the fabric and the thread. Now I need to just sew. I did make it a goal to sew at least one seam every day for the month of August. My current project is a jean quilt that I pieced and am now machine quilting as well as a few "I spy" placemats, a table runner, some grocery bags, some machine quilting, and the list goes on.

As I sew this next month, I will keep track of it and share pictures.

Thrifty Fun

I decided that thrift shop fun can be had at least twice. First, for me it is fun when I find a good deal. Like the time I found a bit stack of books and bought a bag of books for $4.00 which worked to 17 cents a book. I did share that find with my sister-in-law.

There is one thrift store near my house. I will often check it out just to see what they have. The other day I found Domino Express. I looked in the box and it looked like most of the pieces were there. For $1.25 I figured J could have some fun and he did.

It also helps him build some patience.

I was even more thrilled when I was in the toy store at the other end of the strip mall and saw Domino Express selling for $29.98. My $1.25 deal just got better.

It wasn't thrift store but I will say that I started Christmas shopping yesterday at Target -- there were some toys on clearance. I am not posting pictures because I know my sisters-in-law read my blog. I am excited. Time to start counting down till Christmas.

The artist within

Last week Miss K came home from school with two pictures that she had painted. I thought she truly became an artist. Maybe it should be modern artist.

This masterpiece is called "Rainbow". I see different colors but don't quite see the arch that one normally thinks of with a rainbow.

This masterpiece is called "sleeping octopus". Maybe that blue thing on the side is the octopus. I don't quite see it. Maybe I need to hang it on a wall, pay money to look at it, pause and stare and I will see the sleeping octopus.

I also like the fact that these look the same and yet they are different.

Maybe to make her a true artist I should sell these pieces. I have two original Miss K works of art available. These are unframed. Make a bid and you can have them but hurry because it is Wednesday and the trash goes out tonight.

A Bakery

I don't know where Miss K got the idea that she wanted to go to a bakery. For the last few days that we were in China she kept saying she wanted to go to a bakery. We did go to one. I don't remember that she got anything but she did run around and try to grab until mom sat her down and told her to sit. I thought I would share a few pictures from the bakery.

The cakes are always so beautifully decorated but they usually are not sweet. I still remember the one that was purple and basically was a type of yam.

They will often put fruit on the top and on my 40th birthday cake there were tomatoes included on the top. I guess that comes from the old debate of whether tomatoes are a fruit or a vegetable.

I think that wraps up the major events of our trip. It was a work related trip for both of us and we are both still doing work related to the trip. We were able to enjoy some family time.

Safety - our priority

Well, maybe I should say, Miss K's priority. She has been trained to sit in her carseat and buckle up. Forget the fact that for the first three years of her life she didn't sit in a carseat unless we were visiting America.  Her grandfather who takes juvenile safety seriously must have taught her. So when baby goes with us -- baby is safe as well.

Baby rides in the cup holder on Miss K's seat.

Miss K Memories - Part 2

We spent the next few days waiting, waiting for her stomach to heal so we could feed her and take her home. Wednesday was day 6 after the surgery and we went in for our morning visit. The NICU has visiting hours in the morning and evening. All the parents would line up outside the doors waiting for them to open. Then we put on a scrub top and washed our hands and went in. We were known by our child's number so for most of the time we were PI "ling liu" which is PI06. We went in that Wednesday morning and the doctors said they wanted to check her heart. They had already done a test and so we went to the B1 to met with the doctor. He told us a bit about her heart and said they wanted to do a heart cath the next day. We did ask if this could be related to Down Syndrome and were told "I saw that baby she doesn't have Down Syndrome." Wednesday evening I went to the hospital with a friend. Stuart stayed home to read (he was in the middle of writing a paper for a class on suffering). Barb and I visited and took lots of pictures.

She looks so peaceful in my arms. That night was peaceful. Thursday, 6 years ago today, we again sat in those plastic aqua chairs but this time we invited Elinda, Nai nai, to come with us. We sat and sat waiting. Around 2:00 Elinda left to attend the weekly prayer meeting and we waited some more. I was tired and so I left around 4:00 or so. We still had not heard anything. I got home and got a text message from Stuart saying it was not good and I needed to come back to the hospital. I arrived around 6:00. It wasn't visiting hours but they allowed us to come in. As soon as we walked in and looked at her, we knew it was not good. She was white and had weighted blankets or so it appeared on her. The tubes that had been out were back in. We sat in the treatment room off the NICU and cried. The Christian nurse we had met came in and prayed with us. We called my dad and work and actually was able to talk to him. We asked if he could please send my mom. That began their day of working to get tickets, pack, and come. Then we called Ron & Elinda to come get us. As we were in the NICU the doctor looked at us and told us to "go home and get ready she is not going to make it". I told her that Miss K was in ShangDi's hands and ShangDi would take care of her. I remember sitting in our living room at 11:00 that night with Ron, Elinda and our Pastor and praying. We went to bed and we did sleep that night. We were up early and called the hospital around 6:00am. She was still living.

We got ready to go to the hospital Friday morning and we got the call from the doctor telling us that the chromosome study was back and confirmed that she has Trisomy 21. We went to the hospital to meet with the heart surgeon. The doctor spoke English and prepared the documents for us to review and sign giving all the risks of the surgery. He knew about the problem she had the day before and was willing to operate. The best we could figure from what we were being told was she had a bleeding problem. I did later read the report and she had a heart failure during the cath procedure.

Saturday evening my parents arrived. They thought they were coming for a funeral but instead were able to be with us for her heart surgery and spend a few days after that.

Monday was heart surgery and after all the other times of sitting in the plastic aqua chairs on the 2nd floor this was not near as long. At one point I heard them call for us and went to the counter while Stuart and my dad were walking. She wasn't supposed to be done yet at least in my mind. I figured they were going to tell me that something bad had happened but they told me she was done. We could go up 2 floors to the 5th floor (if you are reading and doing the math you are probably wondering what happened but four sounds like death and so the hospital does not have a 4th floor). As we went up we saw her being wheeled back into the NICU and the doctor said those wonderful words, "everything is ok".

She spent 12 more days in the hospital. She was covered under my health insurance for the first 30 days so most of her stay was covered, the hospital charity fund paid some and we paid about $330 USD. God provided.

I took comfort in the fact that I know that God is in control. This was not a surprise to him. I know that God is good not by looking at the things around that happen but by looking at the cross.

Summer School

Before we left on our vacation/work trip we had a big push to get school finished and we did. We finished the books and things that we wanted to do. The last few days in June when we were in China counted as school days and the first days of July counted for 2010-2011. Our year runs from July 1 to June 30.

We returned home and J was supposed to do some math and reading to keep those skills. I gave him a math workbook but he decided he just wanted to continue in Saxon Math 3. It took about 3 days home with little structure for mama to realize he needed the structure. It was a combination of coming home, no TV and video games after having more than normal while traveling, and no structure so time to start school again. At the same time he is excited about the new things we have for this year -- Apologelia Botany and Winterpromise American History. I don't think he was as excited about Shurley Grammar.

We had our big field trip -- walked the Great Wall, saw the Forbidden City, bought a fan, and some other things, ate Chinese food, saw how silk was made, and experienced life in China. Now we are home and doing a bit more structured school this summer though not as long of a time as other months. J does have two different soccer camps coming up.

She really misses her preschool and talks about her teachers all the time. She prays for school and the teachers and a number of other things that we don't understand. Miss K is officially going to summer school but not the preschool that she loves. She gets the bus at 11:35 and gets home at 3:00 which is much earlier than during the school year. Her summer school session is four more weeks.

So I have decided that we will basically school around the year. This will allow us to take breaks throughout the year.

Milk for ESL students or teachers

I guess it was fitting that we bought ESL Milk while we were traveling. After all, I was teaching ESL (English as a Second Language) so I guess we should drink that milk.

For some reason this just seemed funny to me.

Annie's

A few years ago, I came here with a wonderful friend and one of the places that we ate at was Annie's. We decided to go there last night and I think we wish we had gone there a few more times as the food was delicious and the price reasonable.

One of the fun things for the kids was they go to make a free pizza. The waitress told us that they could make a free pizza and I said, "excuse me." I wasn't sure I understood. Yes, it was a free pizza. Not big but fun for them. They brought a plate with dough and flour for each and then some sauce and cheese.



After they made the pizzas and were baked, the kids were able to enjoy them.

Annie's is a wonderful place and in some ways we wished we had gone there more or at least instead of the expensive meal we had at TGIFridays.

Miss K - a few memories

Sorry I didn't get to write more yesterday. Since I have not written much in my blog about her story, I think I will write bits over the next few weeks.

Miss K was born when we lived in Asia. As we looked back on her birth we see so many ways that God was working and preparing even prior to her birth. It seemed that the city where we lived the foreign babies were born either at one hospital or delivered by Dr. Lee. I started at the hospital because at one time Dr. Lee just delivered in his clinic and I wasn't sure I wanted to do that. We went a few times to the hospital but after feeling like they were not caring for me. I was told I gained too much weight but the previous visit they had not weighed me so how did they know. They did a blood test and were pushing for an amniocentesis. We didn't want to do that so combined with other things I decided to switch to Dr. Lee. He was no longer delivering in his clinic but at  one of the hospitals. I was able to have my visits in the clinic and only go to the hospital for delivery. The hospital was about 30-45 minutes away in a taxi. God was working as the original hospital didn't have much of a NICU and they would have moved her to the National hospital which is big and I didn't like because of a medical exam I had to endure there once.

So God was working in preparing a hospital and doctors and staff that were ready to care for Miss K and her needs. The only indication that we had was a positive blood test.

Miss K was born at 2:10am Aisa time on Monday morning, the 12th. It was Sunday afternoon were my family lives and my sister-in-law considers Miss K born on her birthday, the 11th. It is true but a bit confusing. She was tiny just 6 pounds 1 oz and stayed tiny for a long time. I guess she is still tiny weighing about 34 pounds and wearing size 4. We were able to spend some time with her just daddy, mama, and Miss K in a separate room. Then she was moved to the nursery and she wasn't there long before they requested to move her to NICU because of her breathing. I remember looking at her and seeing such tiny ears and also her fingers were blue. It was as if she couldn't warm up to the outside world.

Once she was moved to NICU they began a number of tests and procedures. It didn't take long and they were requesting a chromosome study. I was not convinced that she had Down Syndrome. One of those early tests indicated that there was no hole between her stomach and small intestine. On Thursday when she was 72 hours old they did an endoscope to view and determined that the hole was just .5mm (about the size of a fine pencil point) since she was under for that procedure they decided to go ahead and do the surgery. That was the longest day ever. We sat in the surgery waiting area which was just a few rows of plastic aqua chairs and listened to Chinese TV blare. We tried to read and talk but our tiny baby was having surgery. Finally, the surgery was finished it was hours and hours of sitting in the hard plastic chairs. She was moved back to NICU and the next thing was to wait a week while that incision healed. She would need IV feeding for the week. We were waiting for that week to be up so we could feed her. Once she was eating and things were working fine we could take her home.

I will pause for now and post more later.

This was taken when she was about a month old.

Happy birthday Miss K

6 years old. It is hard to believe that it was 6 years ago that she was born.

She was tiny. She needed two surgeries. She was a fighter.  The doctor said she wouldn't make it through the night but she is and she has been going strong since that night. Some day I will have to write more of the story.

This is the first birthday that she understood and knew it was coming. She wanted cake, balloons, and candles. She wanted Grandma, Grandpa and Courtney. We had a little celebration at home. We are still recovering from jet lag.

Here she is enjoying her cake.

She got some Duplo Farm Legos, a ring stacker, pool, and a wooden doll house which she is enjoying.

There is more I could and should write but jet lag has set in. I will try to write more when I am awake.

Things we don't see at home

That was the assignment that I gave J the other day. He had a meltdown and some of what was happening was he was missing home and ready to go home. He and I went for dinner which sounds so nice until you realize it was meal #7863 at McDonald's. Okay, that is not really true but it seemed that way. We then went for a walk to talk about what had happened and I told him to look for things that we would not see at home.

The horse drawn cart selling fruit. We have seen the horses come down our street a few times. They go to the intersection where they sell.

The people bridges. This is for people to cross the road but also some people will set up their wares there to sell.

There is one thing that we still need to take a picture of and that is McDonald's delivery. J mentioned that McDonald's doesn't have a drive-thru but we realized that at home we don't have McDonald's delivery.

Our corner

For the past two weeks we have stayed in one place and so we have gotten to know the East Gate area of the university. It seems that every afternoon and evening some of the same people come to sell their wares.

The man selling fruit. He had a spray bottle and would spray the fruit some so it would look fresh.

The bag  man was only there in the evening.

On this evening someone was selling flowers.

A few times a minority lady has been there selling things. I love the beautiful designs and the colors. I bought some belts from her.

One more thing that we see on our corner are the two ducks. We have watched them grow in the past week.

Temple of Heaven

This is one of my favorite places to visit. After reading the book, Faith of Our Fathers, this became very special to me as I understood more of the purpose of the Temple of Heaven. I think after this visit I want to read the book again.

We went early in the morning hoping to avoid the heat of the day but it was still hot.

It is difficult to take a picture of the inside. That was about the best I could do. When we told J we were going to the Temple of Heaven, his response was, "I thought you didn't like temples." We told him that this was different as there are no idols here. There are no idols only a tablet.



It was here for hundreds of years that the emperor offered sacrifices to the God of Heaven asking for blessings on the land.

In spite of the heat I am glad that we went even for a short visit.

"Useful for a living."

When I think of the things that are useful for a living, cups is not one of the top things that come to my mind.

Cultural Dinner

Part of traveling and being part of a group is you don't always understand what is going on but you go along. Our team was invited to dinner the other night and honestly I am not sure why we were part of the invitation but we enjoyed a good dinner and a bit of a cultural show as well.

Pouring tea - there is some talent there as you use the long spout.

The still photos don't really show the amazing aspects and talent. The girl had the table spinning and then she flipped it.

It truly was a cultural evening for our children. That was the school for the day.

I had wanted to try another culture but we were running late so we couldn't stop on the way and when we left it was time to put the kids to bed.

I am having coffee withdrawal. I think I can count on one hand how many cups of coffee I have had in the past 3 weeks.

The old way of life

I asked a tour guide that we met for a recommendation of something that we have to do while we are here that is this city. Lobster told us that we needed to see the hutongs. Yes, the tour guide's name was Lobster. Back to the recommendation, that went on our list of things to do. Then while we were in Starbucks one of the few times we have been in there we picked up a magazine about the city and saw some mention of hutongs to visit. So we decided to walk down one of the alleys.

It was fun to walk and look in the various doors and doorways.





It was a fun walk and I am glad that we did it. It is projected that these communities will not last much longer as the city grows vertical.

Hello my name is

Hero - He is my hero. I mean, he is my student.

Blank - That is not a blank stare that is Blank staring.

Lemon - Yes, she is a big sour.

Things around town

We made it to the capital city and were glad to be settled in one place for some time.The primary purpose of our trip was here. I have been busy teaching. It has been daddy and kids time and I have fit some things in when I have time.

Daddy took the kids to the zoo.

I asked Miss K where she went. She said, "zoo".

I asked her what she saw. She said, "panda". Then later she told me "tiger, dog". Interesting that neither daddy nor J saw those.

We had a rainy afternoon and so we  headed to the science museum. It was good considering where we are.

I took the kids to the Forbidden City. 3 years ago we took Miss K in the stroller and let's just say the Forbidden City was not built for strollers. I had her walk most of the time this year. I did bribe her with ice cream if she walked.



It has been fun to hear what the kids especially J has been learning on this trip. It really has been educational for him.

We have been here too long

J has mastered chopsticks.

Miss K is singing along with the TV.

The kids have a favorite cartoon.

The kids are dressing in traditional clothing.

Just for the picture. Miss K wanted to wear it to bed and then she decided she wanted to wear it to church.

Hello, my name is

Yoyo - I don't know if she is up and down all the time or not. She worked in the hotel.

Lion - Don't mess with the manager at Pizza Hut or he will roar at you.

First - "Do you want to go first?" asked the teacher. "First" said the student. "Yes, you can go first, what is your name." "First." That is his name.

These are just a few of the people that we have met.

Now before you think I am mean and picking on them because of the name they chose in English, I will tell you that my Chinese name means "silk shirt" so they can all laugh at me.

Signs around

At times we laugh and at times we just scratch our heads wondering exactly what they mean.

This one just seemed funny.

This one doesn't seem that funny.

until you realize that this was in the shower. Yes, the shower has a wet floor. I guess I should be careful.

On the night train

He looks pretty happy considering it is 2 hours past his bedtime.

We got to the train station at 9:00 or so and before we made it through security Miss K was asleep.

She woke up around 5:00.

It was an 8 hour train ride. We got on at 11:16 and arrived around 7:15. We made sure we got soft beds and we had a whole compartment to ourselves.

Third City

Really it was the third city in our three city tour but it was the fifth city in 5 days. We took the train to the south capital city. It was just 1.5 hour train ride. Again, when we arrived the fun began. We told them we had lots of luggage and they tried to put our group 8 people and all the luggage as well as 2 other people in the van. That did not work. Finally, we made it to the hotel after the other 2 people took another car.

We started that day at bridge crossing the Yangtze River. Up at the top where we can have the breeze of the vehicles blowing as well as the dust and dirt. Don't forget my dislike of open heights. We didn't stay up there long.

Our next stop was a lake and a park. We walked and enjoyed the view.

Next we went to the daily factory where they tried to sell you something. This time it was a jade factory but this time they gave us a small piece of jade.

Then we had lunch.For about 75 cents the kids and I ate.

We then went through the house and gardens of a general. I don't remember much more. It was hot and I was carrying Miss K.

We had our daily boat ride and visit to a temple. The kids and I just sat and drank some water.

Then we headed to a mountain after sitting in traffic. The kids were tired and so we didn't do much but buy some chips to eat. We had to look a bit to kind some that we would like -- we didn't buy blueberry, cucumber, lime, Italian tomato or kiwi but rather classic and Texas grilled meat which was like a BBQ chip.

It was a long day. We spent the night in that same city.

The next day we went to a lake and enjoyed a walk both in the morning and the evening.

The old city walls are along the lake.

That pretty much ended our tour. We were going to take the night train and be able to settle in one place for two weeks.

Next Stop

--Wuxi. So when I last blogged about our trip I mentioned that we made it from the bus terminal to our hotel. We had a tour guide walk us there - "it is just across the street" were his words. Not really down a block and across a 6 or 8 lane road. Oh and to make it more fun, it is rush hour. We spent the night in Wuxi and then the next day began our tour. I had no idea what was in Wuxi.

Our first stop was a movie set type place. I did remember that the Wu were part of the Warring States period but not much else about Wu. It was hot and we walked quite a bit. There was a life demonstration which was interesting.

I think the most exciting thing was the obstacle course. The kids had been looking for a playground which by the way we really have had a difficult time finding but the obstacle course gave them quite a bit of fun.

Miss K had to try too. I was impressed with her climbing.

The next stop was a lake. At times it seems like this was a lake tour or water but I told J that shows you how important water was in ancient times.

I know it is a bit of a gray picture but really that is about how it has been here.

We made a stop at a tea pot factory but we did not buy any. That was the sales pitch of the day.

Next we took the train to the south capital. Our adventure continued there.