It's been a while since I've updated and a lot has happened since then. In November, Sierra landed in the hospital with pneumonia and a staph infection. She was only there for 5 days and we didn't have to go to PICU. She was able to get out a few days before Thanksgiving.
Tuesday, December 22, 2009
Posted by Rosetta at 9:21 PM
Saturday, October 17, 2009
I'm not sure if anyone reads this blog anymore but I figured it would be good for me to update for my own benefit. It seems like sometimes progress kind of sneaks up in little areas and they can be so small that you don't realize they are there until you look to the past and realize, "Hey, she didn't used to do that!"
Lately during feedings, Sierra has put her hand up a couple of times and placed it on the bottle. She'll leave it there for a few seconds at a time. In the past, if she would ever touch the bottle it would be with her fist closed. Now she is placing her hand on the bottle with her fingers open! So I decided that maybe it is time to see if she can gradually make the transition to a sippy cup. I bought her a sippy cup that has handles on it. The plan is to eventually get her to hold on to those handles. I had to remove the valve inside that prevents the sippy cup from spilling because her suck is still too weak to get anything out with that valve on. The few times that I have given it to her, she has done pretty well. I think she is rather annoyed that it isn't the bottle, but she has been able to drink out of it. One of the times, I took the lid off for the last few sips and gave it to her that way, like a regular cup. It was a bit messy, but she did fine with it! I would tell her, "Okay here is comes, now swallow it." That would give her an idea of where the liquid was. About 6 or 7 months ago, I had tried doing this and it resulted in the drink going down the wrong way and her having a choking fit. I didn't repeat it because I was afraid of her aspirating. She has had stem cell treatments since then, and I honestly believe that they are what have helped her gain more oral motor control.
I have been very pleased with Sierra's new therapists! They have been doing a lot with her and giving me ideas of what things to do at home. Here are some of the main things we are working on:
1. Stretches: Her arms. Her arms do not straighten out all the way. We are working on stretching them so hopefully the muscles will stretch and give her better range. Her thumbs. Her thumbs are a bit tight. Not too bad, but we are working on making them better. Her ankles. Same thing, just trying to make sure they don't tighten up. Her side. She has a tendency to pull to the left. This is causing her back to curve. We stretch out her left side and curve her to the right.
2. Sitting: We've been working on having her side sit with her arms in front of her supporting her and her fingers flat on the floor rather than in a fist. She did an EXCELLENT job on Friday!
3. Crawl position: Having her on all fours with her knees under her, her hands supporting her, her fingers flat on the floor, and her head up.
4. Rolling: She does a bit of rolling on her own but she will only roll towards her left. They are working on getting her to roll both ways. Last Friday, they put her on a swing. It is basically a square board suspended from the ceiling. They had her laying on it. A therapist was on each side. They would tilt the swing and have gravity help Sierra roll. She did really well on that!
5. Mouth exercises: They have been showing me some exercises to do with Sierra that are supposed to strengthen the muscles in the mouth.
Sierra gets therapy on Tuesdays and Fridays. On Tuesdays she gets half an hour of PT, half an hour of OT, and half an hour of ST. She was supposed to have the same schedule on Fridays but the OT and PT decided that instead they would rather work together and give Sierra a more rigourous 30 minute session instead of doing them seperately. It has seemed to work out really well. Sierra did such a good job with the two therapists. They made her work hard!
Posted by Rosetta at 11:27 AM
Wednesday, August 26, 2009
Tuesday, August 25, 2009
Rolling, Rolling Rolling
Sierra has been making so many little improvements in the past couple of weeks! Now she regularly rolls from her right side, onto her back, and then onto her left side. She doesn't like being on her right side so whenever I lay her down on her side, I put her on her right side. =) She almost immediately rolls. This morning, she rolled from her belly onto her side, onto her back, and then onto her other side. She was just about to make it back onto her belly but I had to interrupt her because we had to leave for her speech therapy.
Today Sierra had her very first speech therapy session. It is really more about learning to communicate and do things than it is about talking. The therapist had a toy that makes noise when you touch different buttons on it. She would put Sierra's hands on it and help her touch the buttons. We put Sierra on her right side (the side she doesn't like) and had her play with the toy while on that side. I believe that she was responding to the toy, because she did not even try to roll during the whole therapy session even though she hates being on that side!
Sierra's birthday is next month and I am really wanting to get her some toys that make noise, play music, or have varying textures for her to touch.
Thank you all for your continued prayers. God is continuing to work in the life of this miracle baby!
Posted by Rosetta at 5:44 PM
Thursday, August 13, 2009
On Monday Sierra got a cold. She has been pretty congested. When I first saw that she was getting sick, I began giving her Berry Well which is a syrup with elderberries, Bee propolis, Echinacea root extract, raw honey, and raw apple cider vinegar. I was giving that to her about every 3 hours or so and giving her garlic "tea." The garlic did wonders in helping break up the congestion and the Berry Well helped boost her immune system. Of course all the prayers helped as well! She is doing MUCH better today and I believe she is on the mend. Yay! We didn't have to go to the doctor or give her any medicine.
Over the past three weeks or so, we have been seeing a lot more progress! They are all very little improvements but they are improvements nonetheless. Let me see if I can remember them all. She has started using both legs equally. Before, when she was on her belly, she would pull her right leg up under her and push with it, but would hardly ever do that with her left leg. She has begun using her left leg almost as often as her right leg.
Sierra is continuing to do well with her weight bearing. She will stand for several minutes at a time when we hold her up. At church, I lean her against the pew and she can stand without me supporting her.
Her big toes always used to be scrunched up. About two weeks ago we noticed that they weren't scrunched up anymore. They were fully extended! I'm not sure the significance of that...I think it may have to do with her muscles loosening up, I don't know.
We've started noticing some more purposeful movements. Sierra has begun to put her hand up to her mouth. The other day, I put a toy in her hand and then helped guide it to her mouth. After that, she put it in her mouth, by herself about 3 times! It could have been an accident, but I don't think so. She has also shown more interest in touching toys.
Sierra's grandfather made a 12' crawling slide for her. The angle is adjustable. It encourages her to crawl and gravity helps her make progress. She is getting very good at crawling down her slide!
Perhaps the most exciting thing is that we discovered that she is beginning to understand some words! My mother pointed out that when we say, "eat" Sierra will start moving her mouth like she wants to eat. We tried saying "eat" at different times and she would respond by moving her mouth. Since she understands "eat" who knows how many other words she understands! She just has not yet learned how to show that she understands them.
There is a new therapy place that opened here in Temple. We have been to evaluations for speech therapy, and occupational therapy. She will get an evaluation for physical therapy on Monday. We were VERY pleased with the therapists! They were excellent! This therapy place is called Hope Therapy Center. There have a branch in Waco and just opened this branch in Temple. They are eventually going to get aqua therapy and hippotherapy.
Posted by Rosetta at 4:55 PM
Monday, July 13, 2009
First of all, I just wanted to say that Sierra's very first cousin was born today. His name is Remmington James Shalom Klassy. Sierra hasn't met him quite yet but she will soon.
Sierra was very happy to have her CA grandparents here for a visit. We were all sad to see them go.
Sierra got to meet her great grandmother Fedelem for the first time while we were in FL.
This week Sierra's other great grandmother is visiting.
Doctors and Tests
Sierra has quite a few appointments coming up this month and next. Today we went to see her pediatrician for a check-up. Tomorrow we go for a 4 hour video EEG. If the results are good, her local neurologist will consider decreasing the amount of Keppra (anti-seizure medication) that she is taking.
Dr. Hammesfahr wants us to go see an endocrinologist and to have Sierra's hormone levels checked. Brain injured children usually have messed up hormone levels. He says that by correcting those, it will help the brain. Dr. H also wants her to get an MRI, a STECT and another test. We will be doing those next month.
We have been seeing lots of little improvements over the past couple of weeks. Sierra is doing so much better with weight bearing on her legs! Now she can stand for several minutes at a time. We don't need to hold onto her for balance but she does have to have her hands on something to help her keep her balance. Her balance is improving so much! I put her in a sitting position the other day and she sat there for several minutes.
She has also become much more "talkative" and louder. She still does not make any real tonal type sounds. It is mainly gutteral.
Another encouraging improvement is that she has been so much more awake and alert. Before, she would keep her eyes closed almost all the time even when she was awake. Now, she keeps them open quite a bit throughout the day. She is doing so well. I am so proud of her and so grateful for these improvments that God has given her! We are continuing to pray for more improvements.
I really should take some video clips of her and put them on here. I'll try to get to that soon.
We are very pleased with Dr. H and how optimistic he is. The only very discouraging thing is that we will have to fly out to FL once every three months to have an appointment (This is not his requirement...the medical board of FL requires it). There is a very slight chance that we may be able to get insurance to cover it. We would really appreciate your prayers that this would happen. We will just have to trust that God will provide the funds to allow this.
Posted by Rosetta at 8:52 PM
Friday, July 10, 2009
I do have some updates to write about Sierra, which I will try to get to later today or tomorrow, but this was on my mind so I wanted to write it down.
Today Sierra and I went to the grocery store. While we were there, we saw a young man in an electric wheel chair. I'm guessing that he had cerebral palsy in addition to other disabilities. He obviously could not walk, his hands were spastic and not much use to him, he got around by using a stick attached to his forehead to move the wheelchair. I have to admit, I stared at him. But, it was not out of pity or to gawk.
I stared out of admiration. Here was a young man who was severely disabled but he did not let his disabilities disable him. He was at the store all by himself. The workers seemed to know him. One employee was chatting away with him and then another came to push a cart for him. This young man could not talk, but he had a computer screen in front of him that was a communication device. He did everything with the stick attached to his forehead. He communicated and maneuvered around the store. You could tell that it wasn't always easy to get around with the stick and get it in the right place, but that did not stop him. I didn't see a man to be pitied but a man to be admired and respected, not someone who was disabled, but rather someone who was enabled with determination and strength.
It is my hope and prayer that Sierra will be like this young man, in that she will have the determination and strength to continue going even when life is rough.
Posted by Rosetta at 12:37 PM
Monday, June 15, 2009
Ronald McDonald House
In the previous post, I mentioned that we are staying at the Ronald McDonald House. It is so nice here! We can stay here for $10 a night. Nearly every evening someone provides a meal. Last night it was a church. There is a huge kitchen and dining room. In the kitchen there is food that is free for anyone. So even when no one provides a cooked meal, there is PLENTY of food to eat. The room is very nice as well. We have fancy sleep number beds. There aren't TVs in the rooms but there are TV rooms and they have dvd's that you can check out. Some of the TV rooms have computers with internet access as well. There is a fenced in yard area and a playground for kids. Each family is required to do a little chore every day. Our chore is to clean the outside furniture. The whole invironment here is really nice. It is such a blessing to us! It has made me want to begin volunteering at the local Ronald McDonald House.
Today we met with Dr. Hammesfahr. He talked with us about Sierra, her diagnosis, and all the treatments and therapies we have done with her so far. We told him about hyperbarics, stem cells, etc. He was very impressed and said, "Wow, you have done a good job! You have done everything right!" It was so encouraging to hear that coming from a doctor! It was one of those moments where I felt like maybe I am not such a bad mom afterall. :-)
Dr. H is going to start Sierra on the vasodialtors. We went and bought a natural one from a health food store today and turned in the prescription for the nitroglycerin. He told us to start her on Ibuprophen three times a day today and tomorrow. He said that sometimes when the vasodialtors are giving they have the opposite effect at first (closing the blood vessels instead of opening them) because the body is reacting to them. He said that giving the Ibuprophen with keep that from happening.
The bad thing is that he said that Sierra will probably have to be on these meds for quite a few years before we can take her off. The good thing is that it doesn't sound like a whole lot. He said a tube of nitroglycerin may last us a year.
He wants to do an MRI, CT, and STECT.
We appreciate your continued prayers for Sierra. We have heard that what Dr. H does works well in conjunction with the stem cells, that is why we brought her so soon after stem cell treatments. We want to maximaze the effectiveness of both of them.
Posted by Rosetta at 1:28 PM
Sunday, June 14, 2009
Yesterday, my mother, Sierra and I left our beloved Texas for Florida for two weeks. Sierra will be seeing a neurologist here.
We arrived at the Austin airport with no problems. We found our gate with plenty of time to spare. Since we did not buy a ticket for Sierra but had her as an "infant in lap" I didn't know if we would have an empty seat to put her carseat in. About 40 minutes before boarding time, I went up to the lady at the desk (not sure what they are called)...
Me: Excuse me, do you know if there are any empty seats on the plane so that we can put my baby's carseat on one?
Her: No, I don't know.
That was all. She didn't bother looking it up or anything. The past times we flew, the ladies at the desk were so helpful. They would look up to see if there were any empty seats and then move us to the empty seats. This lady was very unhelpful.
I went back and sat down until boarding time. They began boarding and my "friend" started mumbling into the microphone who could board. They got through the first class and the platinum. Then they began boarding groups. We were group 4. There were several passengers near us that were very kind and told us to go ahead and board since we had our hands full with the baby and stroller. They said that the airlines let people with small children pre-board. With there encouragement we went forward.
Me: We weren't sure if we could board since we have the baby.
Her: No. Just because you have a baby does NOT mean that you can pre-board. That would just slow things down.
So we went back to the line. Several of the other passengers were rather indignent and surprised that we were treated like that. It wasn't just what she said. It was her whole snotty attitude that really upset us.
We finally made it down to the airplane. We asked the flight attendant if there were any empty seats. She was VERY nice and went out of her way to help us. She even helped carry the carseat to our seats. It was nice to have some kindness shown toward us after the other lady was so rude.
Our first flight was late in leaving. Once we landed in Dallas, we had to hit the ground running to make our next flight. We were some of the very last to board, but we made it.
We arrived safetly in Tampa, picked up our rental car, and headed to the hotel.
We were in our hotel room when around 1 am we heard a car screech and several loud thumps. We looked out the window and saw a very damaged red minivan swerving through the parking lot at high speed. We were so afraid that it was going to hit our rental car! A minute later, a black mustang, which was also damaged went racing through the parking lot. I went outside to see what had happened.
Apparently two women had invited a man into there room (who knows where they met him). They said that they didn't know him. A lady knocked on there door and said, "I know my husband is in there!" She punched the lady who answered the door. Then she took her van and rammed it into her husband's car. She hit it so hard that it slammed into the truck next to it, which slammed into the van next to it. He took off too. I don't know if the police ever caught them or not. I sure hope so. We didn't sleep well the rest of the night. We're so thankful that they did not hit our rental car though!
Today we checked into the Ronald McDonald House. It is very nice! I'll write more about it later.
Posted by Rosetta at 7:30 PM
Wednesday, June 3, 2009
Last Sunday we had an interview with News 8 Austin. It was really neat because that was the first source of media to actually contact us without us having contacted them first. They heard about Sierra from some other stories and asked if they could come out and do a story on her.
If you scroll half way down the page and click "play" the video will come up.
Posted by Rosetta at 6:26 PM
Saturday, May 30, 2009
Here is the latest news story that KWTX did on Sierra. Stephanie Franks has done a great job with all three interviews!
Tomorrow we have an interview with a tv station out of Austin.
Posted by Rosetta at 9:44 AM
Friday, May 29, 2009
Okay, I know it was a while back that I said I would put pictures up from the Sarafi Park. Well, here they are. This was one of the most fun things we have ever done. It was definitely worth going to see!
Below is a picture of one of the most popular exhibits. She almost stole the show from the animals. We considered asking the Safari Park how much they would give us to put her on display.
Below, Sierra is with one of the animal exhibits. DOGS! Only in China would you see dogs in the zoo.
Hehehehe......everyone in China was amazed by Sierra's hair. Everyone including the animals.
See this cute little guy? It is called a Red Panda or Lesser Panda. It didn't look like a panda at all. It looked more like a red raccoon. We were able to pet and feed the Red Pandas. They were so cute!
This is a Lemur. They were not as sociable as the red pandas but we were able to pet and feed them as well.
That is an elephant walking down the street. For 100 yuan (about $12.70 USD), you could have an elephant ride. It looked like lots of fun, but we didn't feel like spending that much at the time.
But, we did feed the elephants. I thought he would take the carrot off of the stick with his trunk, but as soon as he saw it he opened his mouth up wide.
It is somewhat hard to see with the lighting, but Sierra and I are sitting next to a monkey. She has her hand on it's head.
Okay this was the most fun of all! There was a tiger pen. See that cage in front of the tiger? The tiger was not in that cage---we were! They had a little truck with a cage on the back. We got in the cage and the truck drove into the tiger pen. There were dead chickens tied to the sides of the truck. The tigers came up and ate the chickens off of it. We were about 2 feet away from these tigers and we even got to reach out and touch their paws. Below are some video clips from in the tiger pen.
Posted by Rosetta at 3:57 PM
Sunday, May 3, 2009
The safari park we went to on Saturday was tons of fun! It was like nothing in the US. I will write about it and put up pictures from it after we get home.
Speaking of home, today we are heading home! YAY! We've had a great time here but no matter where you roam, there is no place like home.
Posted by Rosetta at 7:36 PM
Monday, April 27, 2009
Sierra is doing much better. She just had that one rough day but the next day she was fine.
She is continuing to improve in her sitting, which is very impressive.
We have enjoyed our time here but are very ready to go home. We will be flying out on Monday, May 4th.
Posted by Rosetta at 9:25 PM
Saturday, April 25, 2009
Sierra isn't feeling too well. She started spitting up yesterday morning. She was fussy all night. Today she started spitting up and vomitting. They went ahead and started giving her fluids so that she won't get deyhdrated. Please keep her in your prayers and pray that whatever she has will pass quickly and that she will not get worse.
Posted by Rosetta at 2:40 AM
Friday, April 24, 2009
Today was rather disappointing. They were going to do a lumbar puncture on Sierra. The doctor tried but was unable to because Sierra's spine is so curved. He had the head doctor try and he also was unable to do it. They said that in children so young, there is a very small area in which you can try. They didn't want to try too many areas because they wanted to err on the side of safety and not risk hitting a nerve. They said that if we ever bring Sierra back when she is a older they would have a better chance of doing the lumbar punctures.
We were very disappointed that they were not able to do the lumbar puncture since it would be more effective than the IV, but the doctors here are so good and we trust their judgment. When they brought Sierra out after the two lumbar puncture attempts I expected her to be all upset. She wasn't. She was lying there peacefully with her eyes wide open and listening to everything. I'm glad it wasn't traumatic for her.
They are going to give the last two treatments to her by IV. The good thing is that since we have already begun seeing a few results (sitting and standing) it looks like the stem cell treatments will continue to help her improve.
Overall, we are very disappointed but know that it is in the Lord's hands. We are grateful for the wonderful doctors here and continue to trust God with Sierra's life and whatever improvements He allows her to have.
Posted by Rosetta at 2:49 AM
Thursday, April 23, 2009
We try to get out of the hospital almost every day except for the days that Sierra gets her stem cell treatments. About once a week we take a driver. That can get expensive though so the other days we usually just go on a walk. The first week and a half that we were here, going to the RT Mart was fascinating. It soon became about as exciting as a trip to Wal-Mart. We also walked down another street that has the Papa Johns and the People's Square.
Yesterday, we decided to take a different route. Instead of going south towards RT Mart or south east toward Papa Johns, we went north. Our walk started out about like all the others. Then we came upon a side street that had some shops. Being eager to explore, we turned down that street. It was a rather narrow street that was full of life.
It was bustling with people, coming and going. The sides of the streets were lined with people selling just about anything you could imagine. There was lots of produce. There were watermelons, pineapples, honey dew melons, apples, oranges, corn, green beans, snap peas, peanuts, etc. The produce looked fresh (not the wilted stuff you buy at Wal-Mart....I plan on going back and buying some once we use up the stuff we already have.)
Some other sights we beheld were people sitting around tables playing games, a baby riding in a basket tied to an elderly lady's back, a scrawny dog looking for scraps, and lots and lots of scooters and bicycles. There were also cars going down the street tooting their horns to clear the way. At one point, there was a traffic jam. There were two cars going opposite directions with hardly any room to pass. They sat there as if they were playing chicken for the longest time. A man dressed in a suit was on a scooter behind one of the cars. He was NOT happy. I'm not sure exactly what he was upset about but he went on and on making his displeasure clear to all. Finally the cars decided to squeeze by each other. There was about 2 inches between their mirrors and I am not exagerating.
In addition to all the produce, there were bakeries and electronic stores. There were a few stores where women were making shoes. We were the only caucasions on the street. This was by no means one of the touristy markets where we had been before. It was enthralling. Many people smiled at us. I was pleased that no one seemed to mind having their picture taken. I think they felt like a celebrity. One man was fascinated with us and our picture taking that he was holding his hands up like he had a camera and showing me what to take pictures of. He was thrilled when I would take the picture he wanted and then show it to him.
Of course the people, like everywhere else, had to get a good look at Sierra and exclaim about this "Waa Waa" (baby). One lady tried to lift her clear out of her stroller. Luckily Sierra was strapped in. One man with produce pointed at his bananas and said, "banana." I'm guessing that was about the only English word that he knew so he was putting it to good use trying to sell us a banana. We didn't buy the banana but we did buy two big pieces of pineapple on sticks. They were about 1/4 of a small pineapple. They were deliciously sweet and cost about $.25 each.
As we continued down the street we saw a covered market area off to our right. We ventured in. These vendors sold FRESH fish and meats. So fresh that most of it was not dead yet. There were cages filled with ducks and chickens and tubs of water with fish, turtles, and eels. At the booths with ducks and chickens there were men in the process of killing and plucking the birds. Then they would set them up on the table to sell. Or if that wasn't fresh enough, you could just buy the live bird and take it home to butcher yourself. One man I saw walked out of the market carying a plastic bag with two live ducks poking their heads out of it and enjoying their last ride. If you didn't want the whole chicken, there was a pile of chicken legs on the table that you could purchase. Yum! Yum! (Oh since I am on the subject of chicken legs, the little convenience stores have an isle of snacks. You know how you can buy a pickle in a bag at a gas station in the US? Well here you can buy a pickled chicken leg in a bag!)
In the covered meat market, there was a man who had 4 dogs! Unlike the scrawny starving mongrels we've seen roaming the streets, these dogs were well fed. He had two German Shepherds and two Collies. You could tell that he really loved his dogs because they were well taken care of, well fed, and seemed happy. That was an unusual sight.
We exited the meat market and continued down our street. It wound around and ended up on one of the main streets. It was almost like a hidden little world in there. You had to know where it was (or like us stumble upon it) to get there. It was very fascinating and we felt like we got a much better picture of what China is really like rather than just the touristy stuff. We are eager to do more exploring and find some other streets like this.
Posted by Rosetta at 7:04 AM
As you may have noticed, I've spent the last few days bringing both this blog and my blog into the 21st Century. The top feature on the right is the date and time currently in China for your reference.
Next is a link that says "Tweet this". This is a shameless plug asking you to promote the blogg on your twitter account.
Below that are the subscription boxes - one for subscribing by email and the other for subscribing using an RSS feed.
The rest are pretty standard widgets that have either been there or don't need further explanation. Also, check out my personal blog at http://jasonjfedelem.blogspot.com/.
Posted by Jason Fedelem at 12:29 AM
Wednesday, April 22, 2009
Sierra has had three treatments by IV injection. The last two will be lumbar injections, with the first tomorrow. Please pray that it would go well.
Posted by Jason Fedelem at 11:32 PM
This evening Rosetta and I decided to take a walk in the neighborhood of the hospital. We were a couple blocks away when we decided to turn down what looked to be a small alleyway.
It certainly was narrow, but not small by any stretch of the imagination. I bet it went a good mile. It had all sorts of little shops with apartments over them for people to live in.
A little further down we discovered a side alley to this alley where there was a meat and produce market as you can see in the pictures below.
We walked the rest of the alley and came back out on the main road.
Posted from Hangzhou at 9:03 PM on April 22.
Posted by Jason Fedelem at 8:03 AM
We thought we'd show you a little of where we are staying.
The following video shows you our room.
Posted by Jason Fedelem at 7:35 AM
Tuesday, April 21, 2009
Today in therapy Sierra did something incredible! She sat unsupported! This is truly a miracle. She has never been able to do this. Every time we would try to sit her up she would go flopping backwards.
Here is a video clip of it. Sorry it is sideways. :-P I keep forgetting that if I hold the camera sideways the video will be sideways.
Posted from Hangzhou at 11 AM on April 22, 2009
Posted by Rosetta at 10:00 PM
We came to China in faith that God would do a mighty work. We were also told to not expect any improvements for 4 months.
I don't know if this was due to stem cells or not, but Sierra stood for 2.5 minutes yesterday! Her previous record was 45 seconds.
We're excited about this but obviously we want to see her repeat this. Time will tell. Thanks for all your prayers.
Posted from Hangzhou at 8:39 AM on April 22.
Posted by Jason Fedelem at 7:39 PM
Thursday, April 16, 2009
The weather here has been very nice. The temperatures have been about like there are at home. Today the high is supposed to be in the 70's and tomorrow it is supposed to be in the 80's. The other day it was nice and warm here. All the poor Yankee's were dying from the heat. We didn't even have our air conditionair on. We had about three different Chinese people come in and tell us that we could turn the air on. They were rather shocked that we did not want to turn the air on. Something that I can't figure out is that 90% of the people here seem to wear long sleeves or a jacket no matter what the weather is like.
I am rather tired of the Chinese food. It is all so greasy. If I am going to eat greasy food, I want it to be something like fries, onion rings, etc. not Chinese stir fry or vegetables. One of the nights we were here I was dreaming that the RT Mart (which is like a Super Wal-Mart) was selling Blue Bell ice cream. It was $10. for a half gallon but I was going to buy some. Then yesterday I was dreaming about good ol' American cheese. They don't eat much cheese here.
We did bring some packaged food. Today I will cook all of our meals here instead of ordering out. We brought some blueberry muffin mix from home. I was going to attempt to make pancakes the other day. My attempt at pancakes was a miserable failure. (They don't have a stove here just a cereamic hot plate that gets way too hot for pancakes). After burning what was supposed to be a pancake, I came up with a clever plan. I took a ceramic coffee mug, poured some batter into it and then put it in the microwave. Ta da! Blueberry blobs! If you closed your eyes and used your imagination, they could almost pass as blueberry muffins. They say that necessity is the mother of invention.
We have gotten a kick out of how the cleaning ladies use the word "hello." Here, if you are Chinese and only know 5 English words, you use those 5 words as much as possible it doesn't make a bit of a difference if you use them correctly or not.. If the cleaning ladies just mopped they wiill say, "Hello, be careful." Jason took some dishes to the kitchen to wash and the woman said, "Hello" and then motioned for him to leave and that she would do them. They tend to use "hello" more as an attention getter than anything. What was hilarious was the other day when one of them was doing hand motions to try to tell Jason something. Neither of us understood what she was trying to say. So Jason said to her, "Hello" and motioned for her to follow him. He took her to someone who did speak English and got them to translate.
TREATMENTS and FAITH
We have been forewarned that it is very common for children who have had seizures in the past (even if they haven't had them for years) to have a few seizures after the Stem Cell Treatments. They explained why this was the case and it made sense, but I don't know if I can explain. Apparently when the stem cells get to the brain, they cause lots of activity. All that activity can sometimes be overload at first for a kid who has had seizures. Thus initially it causes more seizures. However, in the long run, it reduces the seizures. A mom here was telling us that her daughter usually has several seizures every day. She had some pretty bad seizures eight hours after the lumbar punctures, but now that she has finished all of her treatments they have seen a reduction in seizures overall. In a way it is an indication that the stem cells are getting where they need to go.
Apparently the lumbar punctures are more likely to increase the chance of seizures than the IV because the stem cells have a direct route to the brain. We still don't know if Sierra will be getting lumbar punctures or not. Today she receives her second IV. We are hoping that she will be able to get some lumbar punctures because they are more effective. At the same time, we are a bit apprehensive about her having seizures. We know that if she does have any seizures, it will be scary for us since she hasn't had any since a week after she was born. We've been talking about and decided that we still want the lumbar punctures if she can have them. We are just preparing ourselves mentally that she may have some seizures. The verse that God has been bringing to mind every since right before we left to come here is, "God has not given us a spirit of fear, but of power, and love, and a sound mind." We know that God has brought us this far and He doesn't want us to fear what may happen. He is in control and we will entrust Him with the all the side effects and results.
To close out this post, here is the very first picture that I have ever taken of Sierra smiling. This was during her therapy. Sierra seems to like movement a lot. The only smiles we have gotten out of her have been related to movement.
Posted from Hangzhou at 9:53 AM on April 17th
Posted by Rosetta at 8:53 PM
Tuesday, April 14, 2009
Today all Sierra had was physical therapy in the morning and electro therapy in the afternoon. We went to the Hefan market this afternoon
The below video is our driver Jack negotiating for something I wanted. As you can see, it was quite a show and 15-20 people were standing around watching. It was hilarious watching him.
All pictures and video Copyright 2009, Rosetta Fedelem
Posted from Hangzhou at 7:43 PM on April 14, 2009
Posted by Jason Fedelem at 6:43 AM
Monday, April 13, 2009
Last week the doctors did a lot of tests on Sierra and evaluations. She had several physical therapy sessions last week.
Posted by Jason Fedelem at 4:26 AM
Sunday, April 12, 2009
Posted by Jason Fedelem at 6:28 AM
He is risen indeed! Today is Resurrection Sunday. We got up this morning and read about Christ's resurrection. Sadly, we didn't have a church service to go to. We plan on listening to the Easter sermon tomorrow.
We have been here 6 days now. God has been good to us. It is amazing to think of all that went into bringing this to pass and yet here we are. It is only through God's goodness that we are here.
We have been enjoying our time here. Being in a foreign country really makes us realize how much we take for granted. We are so blessed and tend to forget how good we have it. While here, I have not seen anything that resembles a church.
Have a blessed Resurrection Day and give thanks for the blessings God has given you, the best of which was sending His Son to die for our sins. But Praise God, He did not stay dead. HE IS RISEN!
Posted from Hangzhou at 2:08 PM on 4/12/09
Posted by Rosetta at 1:08 AM
...then this post will be worth 24,000 words.
In the Austin airport, getting ready to leave
Street scene in Hangzhou. Note the car parked on the sidewalk.
Most American restaurants here don't taste very American. They have Chinese flavors. Most people get around on electric scooters or bikes as seen in this picture.
Read the sign carefully. The translations here are not usually accurate and sometimes are downright funny.
We're getting pretty good with chopsticks. The chow mein was pretty good. The noodles were more al dente than I was used to.
Bicycles are used to transport everything, in this case steel beams. Oh, and this one is pedal powered, not electric.
Garden in front of a government building
Pagoda in a park
The escalators here don't have stairs, they're flat.
The grooves in the escalator grab some rubber blocks on the cart which allows them to easily transport carts back up to the third level.
Our hotel room
View from hotel room
Another view from the hotel
Leaving the hotel with all our luggage
People flying kites in The People's Square
The People's Square
On a bench in The People's Square
The People's Square
Kid getting a rollerblading lesson in The People's Square
Papa John's was the exception when it comes to food. It's an American restaurant that tastes like it's American equivalent.
Their delivery vehicles are a little different though.
So that's how you say "Papa John's" in Chinese.
Someone transporting a China cabinet down the street on a wheeled cart.
All pictures copyright 2009, Rosetta Fedelem
Posted from Hangzhou at 1:15 PM on 4/12/09
Posted by Jason Fedelem at 12:15 AM