Grateful

You can't spend any time at PCMC without being grateful for the health problems you have and feeling bad for all the kids and mom's who have it worse.

Sean went for blood test and a sweat chloride yesterday. While we were waiting for him to sweat we played soccer with a ball we found outside of the cardiac ICU. Yes, I felt guilty playing so close to all kids who are too sick to play.

I picked Sean up from school and told him we had to go to the doctor to get a sweat test and more blood drawn and he said "yeah, I like to get poked." Seriously, what kind of kid says that? I asked him why and he said because he gets a prize. Yep, this is a kid who is so deprived in life that he has to get poked to get a treat. I'm seriously thinking about teaching him how to draw blood. I'm going to bring home one of my phlebotomy arms. Any kid that interested in health care and anatomy should start learning young. Heck, he knows how to flush a PICC line. He asked me yesterday how kidneys make pee.

 Here he is looking not too sure about this sweat chloride test. They cleaned his arms and then put little electrodes on that shock. Sean said it didn't shock it just hurt a little bit. (I showed this picture to Alex who had the same test when he was a teenager and he said "Oh, those things that shock you.) I'm guessing it feels like a TENS unit. They left the electrodes on for five minutes then wrapped his arms in two layers of plastic. They put warm packs on top of the plastic then wrapped him in a heat blankets. Toasty! He had to stay wrapped up for 30 minutes. I wanted to go to the cafeteria and get an ice cream but they said nothing cold and nothing salty.

 We read a couple of books, played with the magnet board and then resorted to soccer outside the lab. Sean is a sweaty kid without any help. When they weighed his sweat they said they had enough to run the test six times.

 

We met Don for dinner at Aristo's after we left the hospital.

 

Sean's introspection. Sean talks a lot about whose tummy he grew in. I've given up trying to tell him he grew in someones other than mine because it upsets him. We were laying in his bed and he asked "who grew in your tummy?" I said "Carter then Alex then AJ then you." He said "Don't forget Alika and David." "I said Carter then Alex then AJ then Alika then David then you." He didn't say anything for a minute then he asked "If I grew in someone else's tummy would you still love me just as much?" Wow, that surprised me. I told him I would still love him just as much. I told AJ about this conversation and he said "so he's lying to himself." I've always known he knows on some level he just doesn't want to talk about it or deal with it and I've never seen any reason to push it. Adoption has to be confusing for little kids.

Cute kids and fun cousins

Frida has come to stay with us to help take care of mom. She has an almost two-year-old, Christian who is here too. He is such a cute little thing. Sean looks so grown up next to him. He follows Sean around and wants to do everything Sean does. Mom has good days and bad. She had a bad one on Wed because she took off her fentanyl patch. When I asked her why she took them off she said because I told her to. NOT! She has also taken to watching Spanish television. When I asked her why she said because there is nothing on worth watching so she might as well watch something she doesn't understand. I guess that makes sense on some level. I went downstairs and asked her if she wanted a night snack and she said "do I want a cat?" She is getting up and getting dressed during the day and that's a big improvement. 

They wear lots of hats.

Sean started ski lessons on Friday. All of Catherine's kids are there too. Sean and Tyson are in the same class so they are loving it.

All the other kids were ready to go home after two hours but Sean and Tyson wanted to keep skiing.

I'm working for Eaglegate on Fridays so Don has ski duty.

After skiing together on Friday Tyson came to play on  Saturday. He stayed for nine hours and when he left Sean said "that wasn't fair he only stayed a few minutes, we weren't done playing." Cousins are the best!

Pulmonology clinic

I was impressed with the clinic. The MA got us right back. The respiratory therapist came and got us and Sean had his PFT's. He really rocked and did a great job. The RT was so animated, she exhausted me. They even had crafts in the waiting room. Sean didn't even get a chance to play. I was happy about that.

We were only back in the room a few minutes before Dr. Chatfield came in. She had read all Sean's old records and X-rays. She said she thinks he has asthma and while she can't be 100% sure she wants to treat him aggressively for asthma for three months and then reassess. She said while the pneumonia in May with the one week admission was a scary pneumonia she thought the others looked more like inflammation from asthma. She also ordered a sweat chloride test, CBC, IgG, A, E and M. After the exam a different respiratory therapist came in and provided education about how to use the inhaler and spacer, then an RN came in and provided education about the asthma treatment plan. They covered all their education bases. We went to get blood drawn. The Child life specialist was standing in the room. I asked her if it was her job to distract Sean and she said yes it is. "Sean do you want to watch TV or look at these pictures?" Sean said "I want to watch them stick the needle in me and take my blood" and he did. He said "that didn't hurt." The child life specialist told him he could get a prize and he asked if the kids who cried got prizes too.

We stopped at Target to get his $200 worth of inhalers (yes that is with insurance).

Early Thursday my phone rang but I didn't answer it. A little while later I checked my messages and it was Dr. Chatfield saying she wanted to talk to me about Sean's labs and she needed to order some more labs. That stressed me out. Our primary care doctor never calls us with labs. Heck, I needed my ovary removed and was two weeks out of surgery before his office called to tell me my ultrasound was abnormal. I called the clinic and left messages and it was five hours before the nurse got back with me.

Sean doesn't have any IgA in his blood. IgA is part of the immune system. This explains why when everyone else gets a cold Sean gets pneumonia. We have to go in next week for the sweat chloride test and some more labs. Then we will probably be referred to an immunologist.

Dr Chatfield wanted us to know that Sean will need a medical alert bracelet. If you don't have IgA and you need a blood transfusion if the transfused blood hasn't been stripped of IgA it can cause anaphylaxis. Other than staying away from sick people and aggressively treating infection there is no other treatment. It is genetic.

IgA deficiency is caused by faulty white blood cells called B cells or B lymphocytes. While patients have normal numbers of B cells, these cells do not mature into normal IgA-producing cells. Scientists do not know the exact cause or causes for these immature B cells. Sometimes clusters of cases occur in families. People with IgA-deficiency are more likely than the general population to be related to someone with combined variable immunodeficiency, another form of immune deficiency. Researchers are trying to find the genes that cause IgA deficiency on the involved chromosomes.

I was really hoping we could be done with the medical post for the year but apparently that's not happening. I am happy it's nothing worse. I was really worried when I got the message.

And that's a vacation wrap

Not once during our whole trip did Sean say he wanted to go home. When we told him on Sunday night we were leaving he said "OK, I'm ready to go to Centerville." Good enough. He did mention several times that he wants to go to England. He wanted to know if we could go home, spend one night and the leave for England. I told him we could go to the England's as in my nieces house but he said that wouldn't be the same.

The only hiccup in our trip (besides the day we froze our butts off) was the trip home. Air China had a problem with the plane. There was liquid in one of the windows. They changed the window out. At one point they had us get off the plane telling us we were going on a different plane. We stood in a hall for five minutes then they told us to get back on the plane.

There was a lady on the plane who was so obnoxious I wanted to smack her. I was so glad she wasn't on our tour group. We had a fabulous group. There were no annoying people, unless of course we were they annoying people and didn't know it. This lady kept complaining the entire time they were fixing the plane. Really lady, you want to fly across the pacific and Alaska in a plane that they didn't take the time to fix. Not me, I'll wait for the repairs. The delay leaving Beijing caused us to miss our connection in LA. The lady at the Delta counter was so rude and no help at all. By the time we had gotten through customs, recovered our luggage and found out we had missed our plane the Air China counter was empty. Delta told us we had to buy new tickets. I called Air China's 1-800 number and they had someone meet us at the counter. She was very helpful and called Delta. We got on the 4:30 stand by and all made it on the plane. We were only about four hours late getting home.

One last rest on Sean's King throne.

Happy traveler

We were so tired we were silly.

This is how Sean handled the delay.

Happy Chinese New Year

There were red lanterns everywhere. Jim said the Chinese New Year is also called the Spring Festival even though it didn't feel very springy. On Sunday a bunch of our group went to a festival in the city. We were too tired and didn't go. If I had it to do over I would have gone. Don and Sean went swimming and I went to the grocery store in the mall and started packing.

Sean and his dragon ornament.

As we were leaving the hotel they had a New Years celebration.

There were tables of food for the dragon. Gotta keep that dragon happy!

Seeing this picture reminded me that we went to a fabulous Peking duck dinner, so yummy.

Dragon Ceremony

I made a video though it doesn't do justice to the volume. There were thousands of fire crackers going of and drummers drumming. It was awesome. I seem to use the word awesome a lot to describe our vacation.

The Hutongs

We took a rickshaw through Beijing 's old Hutongs (narrow ancient ally ways). These neighborhoods are over 600 years old. The emperors of China used to live in them. Until the 1980's when China became open to the rest of the world Beijing was made up of these type of neighborhoods. Now most of Beijing is high rises. We shopped on "Lotus Lane." We ate dinner in the court yard of a local family. Well, we didn't actually eat in the court yard we ate in their dining room. Four families share the courtyard, kitchen, dining room and bathroom.

Rickshaw

This is the street we shopped on. I bought a couple of souvenirs. I liked this street because the prices were fixed. I am not a fan of shopping (unless it's coupon shopping at Walmart) so shopping and arguing over prices is not fun for me. Other's in the group really enjoyed haggling over prices. Speaking of Walmart. I would have liked to visit one in China. We drove past one and part of the signage on the building says "Walmart: A pretty store."

The post office. I loved all the red doors. It reminded me of a history book. Hm, maybe because I've seen them in history books.

A market we passed on our rickshaw ride.

One of the alley ways.

Part of our tour group. This is the home we ate lunch at. The grandfather is a famous artist. He painted all the pictures on the wall.

Hey chicken get out of my way.

Hotel breakfast

The Beijing Trader hotel is a very nice hotel. In the information it said breakfast was included in our stay. I was expecting a continental breakfast like you get at a Best Western in the U.S. This breakfast was like no other breakfast I've ever had.

Sean can't wait to get up in the morning and go to his favorite restaurant. He tried lots of different foods. He said he didn't like seaweed until he heard Ella (another little girl there) say she loved it.
It was interesting Sean realizing our relationship with all the people in our tour group was short lived. When we said goodbye to Ella and Jim (our tour guide) Sean said "I will never see them again." We told him he was probably right but who knows. When he is older he can exchange email addresses with friends but five is a little young for that.

The walls in the restaurant. I thought it would make a great food storage decorative wall. Don said "that food is not for eating" I said "that's beside the point, it looks good and it's useful."

Steamed bread, some plain some stuffed with meat, bean paste or vegetables. So yummy.

A miso soup bar. Who knew such a thing existed.

Row after row of western and Chinese food.

Spreading the bean paste on to the dough.
I will miss these breakfast!!!  I will probably dream about them.

Yes, I am smiling. No, I won't be smiling when I look at the scale.

China Spree world traveler.

Our least favorite day

I'm not even sure where we went this day all I know is it was cold and miserable. So cold that the second stop we stayed in the bus and skipped whatever site the rest of the group was seeing. While sitting in the bus we spied a McDonald's which was good because in addition to being bone numbing cold the food we had for lunch was bad. humorously bad, they just kept bringing us plate after plate of dumplings. We were all laughing so hard. It was a memorable lunch. Our tour guide said it was a famous dumpling house and dumpings are part of the New Year festival. No one in the group will ever look at a Chinese dumpling without thinking about that lunch. They even had a dumpling stuffed with tomato's and eggs.  There is a Pizza Hut, KFC and 7-11 every other block in this town. McDonald's had fried chicken and fried rice other than that it was the same. The McDonald's did have a squatty potty. That made me laugh. They call New Years, the spring festival. I thinks it's a premature spring festvial cause dang it is COLD! The air was good while we there so the mask are purely for warmth. We were worried about the air and came prepared but it was not a problem. The air was about the same as it is in Utah. That's not a complement to China's air.

Sean, running for the arches!! "Do they have happy meals?"

We visited a market where you had to argue over prices. I don't like shopping so shopping and having to haggle for prices is really not my idea of a good time. I did get some cute baby clothes.

I think this place was called the Temple to Heaven.  This is where we froze. Everyone on the tour said this was a miserable day.

We were very happy to get back to our room and go to bed and get a warm nights sleep.

The little traveler

It is fun to watch Sean travel. Seeing the world really expanded his horizons and gave him a sense of confidence. He knows three sayings in Chinese, hello, thank you and Happy New Year. It's cute to see the response he gets when he speaks Chinese to Chinese people. They are so amused, you would think Sean had spoken full sentences. They just think it is so amazing that this little American boy can speak any Chinese. They always smile and touch him. If they are with other people they turn and tell them what Sean said.

 Sean also made friends where ever we went. This little boy is named Roland and his mom works at the Pearl factory we visited. When Sean walked in the door this little boys eyes just lit up. The next thing you know he and Sean were in a back room playing with cars. Roland taught Sean how to count on his fingers in Chinese. They don't use two hands to count to ten they do it all on one. This was the highlight of Sean's day.

 This little boy lived in the red door district. We ate lunch at his parents house. He and Sean played Thomas the Train.

Sean at the prayer wheel.

The most remarkable experience was Sean at the Lama temple. It is a Tibetan lamasery located outside of Tibet. Because it was a temple we couldn't take pictures inside the buildings but it was amazing. There was a 55 foot high statue of Maitreya (the future Buddha) carved from a single block of sandalwood. It was a sight to behold. Sean is very interested in religion. I find that strange for a five year old. Sean wanted to know who Buddha was. In one to the temples there were 200 monks chanting. It was surreal. The temple has open walls so it was freezing. The monks sat at tables in heavy robes with little green lights over their books and they chant. At first Sean was scared. Don told them what they were doing and why they were doing it. Sean said his teacher told him there was only one God. Don told him lots of people worship lots of different Gods or powers. Sean said that the God in his heart was not Buddha. How insightful is that for a five year old.

Sean watched many locals pay homage to Buddha by burning incense and bowing. It was one of those moments that I was glad he had the opportunity to experience. He could watch it on TV or read about it but it wasn't the same as actually smelling it, hearing it and watching it.