BLESS HER WITH SIGHT
June 8, 2008
So we have been back from China about three and a half months now. It seems that it was a million years ago that we were a world away. It took about a month of being home to be totally adjusted to time changes and the regular responsibilities of life that were traded in for five weeks of stem treatments, homeschooling and reading novels.
Since being home Rylee seems to be making many changes that are telling us that her vision is improving. It started to be pretty noticeable a few weeks after our return that she was looking around more. While on the swings she would focus on things going by her. Around the house and at school she is looking for things more with her vision as opposed to her hands. Her Braille teacher told us she was the first student in 20 years that had ever read her Braille words using sight instead of her fingers. When reading her bed time stories it now takes twice as long to get through them because she stops and looks at every picture, asking what it is and what they are doing. She has also started reading print at about 36 point font (previously she sometimes struggled with print that was 1.5 inches tall). And she is now not just reading individual letters, but actual words and even finishes entire decodable books. Most recently she has begun looking out the window as we are driving. She inquires about what everything is. Just couple of days ago she asked “Mommy, why are the yellow lines on the road moving?’ as we were driving through an empty parking lot.
Rylee had her 3 month
post op re-check a few days ago. Her
doctor reports that her optic nerves are now pinker than they were when we
returned from
February 26, 2008
And so we are back…from outer space…and very happy to be in the
Here is the clip if you guys want to see (http://www.firstcoastnews.com/video/player.aspx?sid=102548&aid=121364). So after our big TV production we gathered our four large suitcases, one of which was about 80 pounds coming back. I guess the clothes grew while we were over there or something but the Chinese airport people did not care about the 30 pound overage so I did not either. We wound up back home about six in the evening. My little puppy had gained 20 pounds while I was gone but he remembered me! We got cleaned up and had a bottle of wine that ranked slightly higher than The Great Wall Table Wine and then curled up for some much needed rest. Thankfully we had the whole weekend to get re-adjusted and back to normal. After visiting family and friends all weekend, Tuesday (Monday was President’s Day so no school) it was back to life as we know it. This is our second week back and I finally think Both Rylee and I are falling back into our normal rhythm of life. I still have a million phone calls and emails to return though. And then there is the work that backed up over my 5 week hiatus as well. But time will work it all out I am sure.
Rylee went for her first check up post treatment with the eye doctor yesterday. I do not have the official report just yet but he told me that there is a significant difference in the color of her optic nerves. He compared a picture taken before and then one taken yesterday and even I could see a difference. The change in color he said shows and increases in circulation which is the beginning stages of growth. So now it is a waiting game. I will continue to keep everyone updated on out adventures as they crop up…..
February 14, 2008
Happy Valentine's Day! Here in China we are celebrating by packing up and going home. Today is officially our last day here, to celebrate I shaved my legs for the first time in a month. Rylee has stuff strewn from one end of this room to the other so I am sure it will take me most of the day to pack everything up.
So for the last few days, and right now as a matter of fact, it has been non-stop fireworks. Apparently the Year of the Mouse is going to be celebrated for the next two weeks. The display on new years eve (Feb. 6th) was amazing though. The entire horizon was filled with a show that makes our downtown fourth of July look like amateur night. But the thing is, although the show died down a bit it has never stopped. And not only do they shoot off fireworks at all times of the night but the person who lights off the fireworks most times makes their car alarms go off at the same time. I guess this is meant to make sure that everyone who has not noticed the fireworks, that are going off at rates which make it sound like we are in the middle of a war zone, will hear the car alarm and think "wow what a pretty fireworks display here at 2 am on a Tuesday 4 days post new years eve!" Needless to say, since the the year of the pig has changed to the year of the mouse I have not slept.
Other than not sleeping and watching fireworks while drinking coffee at 6:45 am, not much has been going on. Monday Rylee had her last of six stem cell treatments. She did fabulously, that is until about 3 am when I woke up to vomit all over me. The anesthesiologist used a different drug to put her under for the treatments and apparently that did not mix well with her fries, eggs and oreos (we ran out of GFCF food about a week ago so she is loving it). But after getting up, cleaning up and changing beds she was fine and we were back to sleeping to the peaceful lull of fireworks. The next day we stayed in and did some homework.
Then yesterday we took our last trip to the flea market and the RT Mart. We wanted to get out so we spent the day wandering the streets of China. It was nice just to take in our last bit of culture. We saw a four year old being told to pee in a street
grate. At least he had graduated from split pants I guess. But not only did we take in their culture but we gave the Chinese public one more chance to stare at us. They had a lovely time taking in the sight that was a pale red head with a blind girl bundled up like she was in Alaska. I was very happy to once more give them the chance to see the spectacle of English speaking white people. After a month I am used to the stares but it never ceases to amaze me how everyone is so not subtle about looking at us. They stop walking, turn around and even point.
So it seems, from early signs, that all of our Chinese adventure will be worth it. Rylee's left eye, previous to coming here, showed no signs of light perception at all. That eye which did not dilate is now dilating equal with the other eye that had some vision. She is also playing her leapster correctly using her vision, actually she beat the game. She is recognizing all her letters and the print is about a third of the size that she was reading when we came. Now that last stuff is fairly subjective. We have worked on letters a lot since being here, nothing else to do, so it could just be learning. But the eye dilating is an objective sign that something is going on. The next few months will hopefully confirm big changes from the stem cell transplants that I suspect are coming. The major changes are expected about 6 months out.... But as for now, our biggest change is going to be a change in geography as we are taking a 20 hour flight and coming home!!!
February 6, 2008
First off Happy 51st Birthday Mom! I know you love me telling evryone that you are all the way in your fifties now.
Here on the other side of the world we are down to nine more nights before we come home and cannot wait. The snow has really made it boring here and we are captives in our prison cell (or hospital room). This past weekend a blizzard hit China. In the area that we are in, Hangzhou China, they are used to having snow flurries but none that piles up. It is now piled up and life is nearly a standstill. We had planned on going out this past weekend. On Friday or Saturday (the days run together) the big storm hit.
Everyone was buzzing around telling us not to leave the hospital at all. Johnny, one of the translator/customer care representatives, took orders and went to the RT Mart for everyone. The only food available to order was from the Chinese place b/c I think the Chinese place is just a lady that cooks Chinese food a few floors down. Luckily she was snowed in too so I could get my chicken and cashew dinner with white rice (from her I am pretty sure it is not chihuahua although some of the meat form other places is questionable).
Then Sunday it was still pretty nasty and no one could drive anywhere. But Monday was a glorious day! We left here around 10 am and headed to the flea markets of West Lake. This week is the Chinese lunar new year. Today actually begins the year of the mouse. But Chinese people tend to take off the whole week for this holiday and many of the flea market places were closed. But we were happy to be out. We walked around and enjoyed the scenery.
Here in China toddlers wear something called split pants. These are pants without a seam sewn in the crotch. When the kid has to go, the parents spread the seem and the kids goes, wherever they are standing. On the side of the road, back of a bike, by a plant in front of the RT Mart, where ever they are they are free to go. This is very convenient for everyone I suppose and creates a useful source of fertilizer for the plants lining the streets. With the mysterious lack of dogs I guess the kids have to step up to the plate. Every since this split pants thing was pointed out to me I have been trying to catch a good shot of a toddler wearing them.
The blizzard has messed that up pretty good too b/c all the kids had their splits covered or had a diaper on underneath. But as I mentioned, Monday was a good day. We saw a whole bunch of split pants kids. You can only imagine my amusement when one of them would drop something and have to bend over straight legged to pick it up as all toddlers do. Since there were so many toddlers at the market I got a shot of a few of these pants. One dad even held his boy to pose for me. He did not speak English and first thought I wanted a picture of him holding his son. He was very confused by my taking the picture from behind but he obliged. I was just so happy to have proof that kids run around like this.
So we captured the split pants and then set off to eat. We found a nice restaurant. The bathrooms even had a toilet instead of a hole on the ground. If you go to KFC for instance there is a nice little floor urinal type thing to squat over. But if you go to some other places there is simply the hole that the toilet is meant to sit on. I qualified the place we chose to eat as very nice on the basis that it had a whole toilet but the food was good and it was nicely decorated too. Most importantly we were out.
After we ate we did have to start heading back but the day would not have been complete without the RT Mart. The RT Mart though failed me on this trip. All I really needed was tampons. I had left the box I bought to take on my dresser at home with a few other things, extra contacts for one, but I had seen an aisle marked tampons so I was not too worried about it. When I got to this aisle I realized there was a serious translation error. They do not have tampons in China. They have two and a half isles of panty liners and maxi pads but not one box of tampons. I was having a true momment of culture shock, first split pants then no tampons. Luckily though, there are plenty of other people who come from countries that have tampons and they did not forget to pack essentials. So I bummed everyone's half used boxes. Too bad they did not have contact lenses in my prescription as well.
Since this week is the new year and it is customary to take the week off everyone here had stem cell treatments yesterday. Though Monday was nice, yesterday there were snow flurries which once again made the world stop. Without snow plows and all the airport was delayed and the traffic on the interstate was more like being in a parking lot. The stem cells are flown in each morning from the lab in Shanghai so the snow effected our day, again. We were told during rounds that morning that the cells were on the way but would be a little later than normal. Not that big a deal at the time. Our day went on, we did some school work and played. Anything to keep her away from food and water really. Then about 2 pm they came around, got her IV in and then we sat. I figured since they did the IV, the cells were here and we would be on the way in no time. This was not the case. Everyone got their IV ' s in and ready when the plane landed, but no one thought about the interstate parking lot. As such we were stuck with Rylee in the bed hooked up to saline for about 3 hours waiting. If it were not for her asking to eat, have water or get up about every 25 seconds it would not have been that bad. But finally the cells got here and she went down for her treatment. She was back in no time. Apparently one of the nurses did not know about her glasses and took them off. I heard her getting off the elevator which is down the hall and around the corner. I got her glasses on her she was fine. We then watched Little Einsteins for hours she begged not be in bed anymore. Since it was now about 8 pm and she had been in bed since 2 I cannot say I blamed her. I put on a movie, we got in the other bed and watched a movie together.
Today is a new lunar year so everything is closed and there is nothing going on here. Maybe there will be a party or something tonight....
Some more pictures... including Rylee's first time in snow.
February 1, 2008
So we woke up this morning (your evening of the day before) to heavy snow falling outside. It is so pretty makes a me wish we lived somewhere that the seasons actually changed. Over here in China not much is going on. Rylee had her 4th treatment on Wednesday and it went very well. She had no ill side effects nor did she fight the six hours on her back too badly. Of course I bribed her with fries and she got two large orders of which she wolfed down having not eaten since 8:30 am.
Other than that we have been stuck in the room for nearly a week because of packages and insurance companies. Rylee is on growth hormone therapy because of her ONH. The cost for growth hormone is about $1000 per month. insurance has deemed it necessary, in all of their medical knowledge, that she take this medication so they pay for it. I called to have a refill prior to leaving for China and they informed me that I was requesting the refill two days too early. I let them know that we were leaving the country for 35 days, thinking surely they would understand and refill it early. They did not. They said to have it sent to someone else's house and have them ship it to me in China. Though a thorough pain in the rear, it sounded doable enough; little did I know. We got over here and Jason started calling around and we found that no one would ship medicine to China because the country would not let it in without damn near a request signed by the president of the US himself. Oh and to complicate things, growth hormone has to be kept cool. So not only does it need to get through customs but it needs to get through quickly because if the packaging warms the medicine gets hot and it is no longer any good. After days of calling around to no avail I had resigned to rationing the medication I had her here with me. Though, I did not think this the best option since it is growth hormone and we are trying to get nerves to grow. But then we had a break, one of the companies said that if we had a company account then they could get it her in 24 hours. That got us looking around for anyone with a corporate account who could ship it for us. that did not really work out either. But it got our good friends at Sweet Grass Dairy looking into having their company account upgraded to include foreign shipments. We were set but I had to call the china half of this big Brown company. They informed me that it did not need to to be a company account I just needed copies of our visa, passports, and a declaration page. Easy enough.
That night, while I was sleeping, unbeknown to me, Jason and our friend Lynne spoke to someone in Jacksonville and got it all together. They had the medication the air at 6 pm on Friday with guaranteed delivery in 48 hours. All seemed wonderful, no more rationing and we were tracking it and it was on the way. Within 24 hours it was in China. It was placed in a warehouse and there it sat for a day, ice most likely melting away. Though Brown guaranteed it in 48 hours, no one took into account that shipping it on Friday night would put it hear early Sunday morning and customs does not work on Sunday, In fact no one in China really works on Sunday save service workers. So there the very expensive and important medication sat waiting for Monday morning when I was certain it would be delivered as we paid to have it here in 48 hours.
Monday I finally got ahold of someone and they let me know I needed to speak with a representative but they could not give me the number so I should wait for this important person to call me. I waited, no call or email till afternoon. Me, being so thorough though, I already knew what they needed and went ahead and emailed it to the lady I had spoken to a few days before. She was not the border clearance expert assigned to my case but surely she would be interested in keeping as close to the 48 hours delivery time as possible. I also told her what was in the package and its extreme sensitivity and importance. I do not think that she, nor the other customer service Representatives I conacted cared about any of my plight. But eventually, late Monday, the assigned border clearance lady emailed and I replied with everything she needed. I never heard back. The next day, after a couple more calls on my part to "customer-no-service", she let me know she needed a few more things from me and if I did not understand Chinese maybe I should have a friend take care of it. So I got a translator on the case. She sent this Representative everything that I already had. Maybe it was better because it was not coming from the pushy American who thinks someone paying for 48 hour delivery really means anything.
By this time it is Tuesday afternoon and it obviously is not coming today so Rylee and I left our prison cell of a hospital room. We went to City Center, an outside mall. We walked around and looked, I got some awesome $4 slippers that you have to see to truly appreciate but I will say they reminded me of Duke, my little 7 month old puppy. We walked around a bit and enjoyed being out for the first time in days. Then we stopped at a different RT Mart type place. It was not the RT but it was just as exciting with live shell-less turtles and dried geese. We also got some Chinese wine for one of the nurse's birthday party that night. Since we did not read Chinese, as the border clearance lady so nicely pointed out, we only knew that it was red wine. We headed back to our room just in time to get to the party. While there I was informed from the translator that our border clearance lady has all the stuff she needs but that she made an off the record comment that perhaps they will push our package back a few days because too many Americans were inquiring (or bi*&!ing) about it. But that they had put it in the refrigerator. We enjoyed the evening and all of us at the party pondered the difference in service from the American counterpart of this brown company.
The next day I woke to find the ground covered in a blanket of snow. Rylee would have loved to frolic in this but the tracking said it was in transit and on the way! We stayed inside. the snow melted and no package came. I was annoyed for principle of the matter but semi-OK since I was told it was in the fridge. We did laundry in the sink, had a stem cell treatment and waited. Then on Thursday we woke and tracking said the package was in our city, how exciting! The really funny part is the status was listed as "on-time." Apparently six days in China is the translation for 48 hour delivery.
But at that point it did not matter, at 11 am the package got here. I paid 769 RMB
(Chinese money) as a tax for getting my package across in such a timely manner. The moment of truth was upon us, would the growth hormone be cold? Low and behold the packaging worked as the ice packs were not even melted and the medication was in pristine condition. Thank goodness for small miracles.
To celebrate, we went to the RT Mart for a funny tasting diet pepsi, peanut butter and bananas. I am giving The King a run for his money on who can eat the most PB & Banana sandwiches (and yes Wendy, people other than me do eat these and everyone knows that Elvis was famous for loving them). While in the store Rylee wanted a floor puzzle which she insisted on carrying back herself. After dropping it half a dozen times on the two block trek we were back in room and ready to do nothing. We ate dinner, had a glass of wine to complement the fine meal and watched the Goonies. Today maybe we will go play in the snow....
January 26, 2008
So Saturday we woke up with a very big plans. go to the RT Mart and perhaps go to dinner. We woke and talked with Jas for a while over skype, a wonderful way to keep in touch for free. Then about 11, after my breakfast of white rice and coffee (I have changed from Ramen to white rice in an attempt to not OD on MSG while here), we set off for the RT Mart. It was very cold so we decided to take a bicycle cart down there. It was an exciting ride. Though it is only about a city block to the store, I feared for my life at least three times. These people drive crazy and to top it off the roads were icy. The bike guy did not seem to care about the ice and actually seemed to enjoy sliding all over the place. But we made it to the store unscathed. Once inside we proceeded to take pictures of everything that was atypical of American supermarkets. I took a lot of pictures. We got our fruit, rice and some puzzles and oil pastels for Rylee and were on our way. The ride home, though with a different bike guy, was equally exciting if not more. This bike had a bigger passenger section and I think the carriage part will not make it through too many more rough rides.
I had sent out our laundry a few days ago. A lady comes and picks it, takes it, washes and irons it and brings it back and for 7 RMB per kilo. Since I had had my clothes washing party a few days back I did not have much to give her but I did give her a few things. They came back very nice looking and folded better than I could have done. After a while I kept getting a whiff of something in the corner. It was a mix of outside smell, smog and a touch of gasoline. They smelled to me like jeans do after you have cut the grass and had to fill up the tank which made you splash a little gas on yourself. Like I said they were very clean and she did a great job but I figured out that I detest the smell of clothes dried outside. I am used to non-perfumed detergents, though I prefer the smell of double-downey'ed clothes (downey in the rinse and downey in teh dryer like mom and sis do it), but I cannot stand the smell that was coming from my clothes. So while at the RT Mart I picked up some downey and tide. Once I got back here I reverted to my tried and true method of cleaning clothes that I figured out last week. This time they are way better though because I bought Comfort fabric softener at the RT Mart. Not only do the clothes that I re-washed smell good but I think I caught a wiff of comfort when walking back down the hallway from the kitchen. I
used enough softner to perfume half the stem cell ward. They did not have in the sink fill lines on the bottle so I winged it and they smell good. The hand washing is a pain but I think I will continue doing it for our stay. Not only do the clothes turn out smelling lovely but it gives me something to do.
By the way, it snowed pretty hard this evening and the fact that there are too many bad drivers on the road made us decide to move our pick your own snake dinner until tomorrow after we attempt to find the DVD store again...
Here are some pictures to help put everything in perspective...
January 25, 2008
One Wednesday Rylee, myself and another ONH family escaped the monotony of the hospital to go to one of China's top ten sights to see, West Lake. It was a foggy and cold day but we were happy to be out of the room on an excursion that would take us farther than the RT Mart (the place with the dried squirrels and ducks). We left the hospital at at 10 am to see this national sight. Now I know it is world renowned and all but my impression was that it was just a lake. I am sure we will revisit it later so maybe on a less foggy day it will be more magnificent. It is a big lake though; some fellow patients decided to walk it and I heard that it took them five hours to get around.
After the excitement of the magnificent natural wonder, we decided to go get a starbucks coffee. Now I hate starbucks but a nice warm taste of home was welcomed. it even had the scorched flavor of the starbucks in the states. It certainly was not Dunkin Donuts but it did the trick.
Once we had flavored our warm delights we headed to the largest flea market ever. There was building we were pointed towards for shopping. They did not know it as such, but it was a huge indoor flea market. All of the items were new and many were either knock offs or stolen I am sure. The building took up a whole city block. We walked in and it was row after row of little cubbies full of clothes that were there for the bargaining. The whole first floor was men's clothing, the second floor was women's, third was shoes (or heaven), then the fourth was children's clothes and what I am certain were lead infused toys. We did not really make it any higher than the fourth floor so who knows what was up even higher.
We left that building in search of an elusive DVD store someone told me about that sells American movies still in the theaters for about $1 each. After leaving the flea market building (and refusing to buy a corn on the cob from a guy selling the cobs as a vendor would sell boiled peanuts in the US), we headed into the building that our driver had pointed to and said "DVD here." Much to my dismay it was yet another flea market kind of building. We walked it a bit trying to find the movies but never did find them. The kids were tired so we headed back to our waiting driver and went back to our home away from home.
Thursday we had another free day we went for a run. It was below zero so the run only lasted about 30 minutes but it was nice to get out. Plus I gave a group of teenagers walking something to gawk and laugh at so that was nice. Later that evening we had a pizza party in the common room. We socialized for a while over a few Chinese beers then tucked in with French Kiss.
On Friday, day 11 of Rylee's time in China, she had her third stem cell treatment which was given via a spinal puncture. She did wonderfully. They learned from last time and left her glasses on her. She still screamed all the way up though as she thought they had taken something from her. She was wrong, her picture of a snack was in her hand. She probably just wanted something to cry about after awakening scared. She is now about two hours into her six hour lay flat to avoid a headache period. We are watching little einsteins for about the 247th time and she is calmly awaiting the time when she can eat. I bribed her with McDonald's fries which are on the way here.
Tomorrow evening we will be going out to a restaurant where you choose your swimming snake, they kill it then cook it for you. I hope they have chicken....
Some pictures from China...
Rylee pulled through her first spinal stem cell treatment like a champ. They did the treatment on the 3rd floor in the operating room so that they could sedate her a little heavier because somehow they got the idea she may not cooperate with the doctors.
Knowing Rylee, I was all for this as you have to wrestle her just to get blood. So we rode down to the third floor. I stayed with her until she was asleep.
Then they made me take her MP3 player and her glasses off her. I rode back up to our room and waited. About ten minutes later I heard her screaming from the hall for her glasses. She had been woken up without them on and hell broke loose. When they gave her back to me they said "Next time we leave glass on!"
Then the six hours on her back with no food for two of those hours began. the doctors came to check her and said she could eat if she did not feel nauseous.
She was demanding snacks so I fed her. She kept everything down and did not run a fever which is good as those are the major side effects.
Today we moved to our non-VIP room. The room is nice but there is something to be said for VIP for sure. We pretty much stayed in the room unpacking and hanging out yesterday. And with great sadness I finished Harry Potter. It is sad to have the series over....
Today we are going with an other family to do some sightseeing at West Lake. We have a driver and are off in about an hour....
January 20th
"Knee- how" to everyone, that is Hi in Chinese, we are almost Biligual now I tell you. It has been a fun and exciting weekend. Saturday morning I woke up in a wet spot. Beds in China are really nothing more than a box spring with a comforter over them. Now I know I tend to exaggerate, but in this instance I am being horribly truthful. Due to this awful bed situation, some previous patient left an air mattress behind that is currently between the box spring and the comforter/mattress. Any one who has slept on an air mattress a few nights knows that a couple days after filling it, it deflates a bit. So Rylee sleeps with me on this mattress. We start out on two sides of it but by the end of the night we are both snuggled together in the deflated middle. Friday night Rylee wet the bed, a lot, and we both woke up in the wet spot. It was a wonderful way to start the morning.
After the bedding episode Rylee slept in until about 10:30 while I enjoyed four cups of coffee and about eight chapters of Harry Potter uninterrupted, post shower of course. It was a very nice morning. We then got dressed and visited some neighbors for while.
From up on the 20th floor it appeared to just be a foggy day. I decided to bundle up Rylee and go out for a run. We got downstairs, after a nearly ten minute elevator ride full of people who obviously do not use dial, and it was raining. So we took the long ride back up and we were in our room, yet again.
Since I had missed the laundry lady on Thursday, Rylee was out of clean clothes. With the bad weather making an outing not so doable, I decided that I do the wash the old fashioned way. With a bathtub full of Tide I got the clothes washed. I never knew how much I love my washer and dryer. But the peanut butter was out of her cloths and the room was decorated with wet children's clothes hanging from every available place. Aside form some wrinkles in the clothes and some blisters on my hands from my ringing out jeans, the whole escapade was really not too bad. At least it gave me something to do. After all the hard work washing, I had a peanut butter and banana sandwich and Rylee had a dinner of what I hope is ham with broccoli. Then we snuggled back into the still deflated but now clean air mattress to watch Fever Pitch.
Sunday we woke up to yet another free but dreary day. Unfortunately, I did not get to start the day quitely with Harry as I did on Saturday. Rylee woke up ready for breakfast and a to watch Little Einsteins. After that she was being her regular not so quite self. We currently have temporary placement in VIP suite. Since we were put on the 18th floor by mistake initially, We were moved to the VIP until Monday when someone leaves and we will stripped of our VIP status and put in a regular room. This VIP suite is adjoining to the common room and they were filming interviews for a documentary on these treatments in there. Rylee is so loud that she was interrupting the filming. We were politely asked to take a walk or something, bottom line leave the room to keep the noise down. That lit a fire under me and we got dressed and set out for trek around China. I once again got dressed to run and bundled up Rylee. We were off. Once out it was very apparent that people in China do not run unless getting chased and even then certainly not with a jogging stroller that has a lump covered by a quilt in it. But the stares did not bother me, I pretended it was due to my lightning fast
pace. Rylee and I ran all over China. We went into the heart of Hangzhou, at least I took it to be the heart because it was downtown type area with lots of people. After going about five miles or so from the hospital we turned around and went back. Due to my wonderful sense of direction we just took one right hand turn after a tunnel in a mountain. I figured the large rock with cars coming out of it was a big enough marker that I would not get lost, and I did not. We made it back into our room and after showering, we were once again with nothing to do. So we set off for the RT Mart (the place with the dead dried ducks and flying squirrels for your eating pleasure). I believe every person in china was at the RT Mart. It was a madhouse but were out. We got some eggs and a funny tasting diet pepsi for a real treat. Once back in the hospital there was a little party in the common room as someone is checking out this morning. A beautiful little boy with CP is going home with the new ability to sit up on his own after three weeks here and four stem cell treatments. To celebrate his going home we had subway and Budweiser. It was wonderful to have some tastes of home and the beer tasted surprisingly normal. After sitting up chatting with another ONH mom til about 11 pm Rylee and settled in for more Sex in the City episodes.
On Monday we will vacate the VIP room and move into out real room. At about 2:30 Rylee will have her first spinal stem cell treatment. Hopefully it will all go well....
January 16th
At about 3:30 in the afternoon Rylee had her first stem cell treatment. It was an IV drip of stem cells into her blood system. She did not like the stick very much but calmed right down and curled up in my lap listening to her MP3 player. During the 45 minutes it took to drip in she was singing along to Two Princes by The Spin Doctors and happy as she could be. After there treatment she remained on their treatment floor so the nurses could watch her. She kept everyone amused by driving a wheel chair full speed across the floors. The IV port will be in her arm till morning but she is leaving it alone and said it looks like a stethoscope. Right now she has finished a bowl of chicken and rice soup and is eating snacks while watching Little Einsteins. She has no idea anything has even been done to her. Now I am off for another delicious meal out of a can...
January 15th
So we made it! Rylee and I are now in China. We left Saturday morning. My tendency to be a little late caught up with us though, we missed our first flight. After being set off to the side of the line in time out for about an hour as the more time conscious patrons were placed in their flights, Rylee and I finally got a little help. Some nice lady got us on new flights and we were on our way. It was a short flight to Chicago then a 14 hour flight from Chicago to Beijing. We watched a few movies and slept for the majority of the flight. Luckily the seat next toRylee was empty so she was able to spread out and get comfortable. Then, once in Beijing I found out that we had 45 minutes to get across the airport, claim all four of our bags, carry them, along with our three carry on bags and recheck the checked luggage to air china. Then re-check in, go through security and customs and get on our flight. Needless to say we missed our flight. We were put on a little later flight and headed to wait by the gate. While on the Air China flight we got our first taste of culture, we were served raw fish in a pouch along with something resembling ham with sushi and then rice with fish. But beyond the food, and the guy sitting next to us that obviously did not like children, the flight was uneventful. When we landed in Hangzhou China after 24 hours of traveling, it was snowing and cold but we were done with planes.
There was a driver and staff member waiting to get us, we claimed our bags and were off. Sadly, somewhere after getting our bags, Rylee lost her beloved Blankie. She has asked for it a few times but understands it is lost and gone. We made it to the hospital, after having a very scary car ride (they drive very crazy over here), at about 10:45 on Sunday night. We got into our room on the 18th floor. It has two twin beds, a little dinette set, tv, dvd player, closet, bathroom and water cooler. There is a great view of some of the mountains of China out a huge window that takes up the whole wall. Once we settled in we finally figured out how to use the calling card to get word home that our journey was over. Then we changed it was time for bed, finally in a bed not in a chair on a plane.
Our first day here was hectic. We woke up and then started the exam. Doctors rounded to get medical histories and then needed blood for tests. Then we took a short tour around the town with an interpreter,the city is really beautiful. Many people on bikes and open cars, which are bikes with a little carriage behind for people to sit in. We also went into the grocery store which is in walking distance from the hospital. It is like a three story super wal-mart. The first story is like a mall. The second story is where clothes, housewares, toiletries and such can be bought. Then the third flood is where the food is. Here they have plenty of dried geese and dried flying squirrels hanging in the entrance for you to choose from for dinner. Or if you preffer there are live fish, crustaceans, snakes, and eels swimming the middle of the store that you can have butchered on demand. For tonights dinner I bought some sort of cooked animal that I am so hoping is a chicken. But after two days of soup and funny tasting fruit I am willing to give something a try just to get a little full.
Right now three US ONH families here, one is another six year old girl. There are also a few Australians so there are plenty of english speaking people to talk to while passing the time. Tomorrow is Rylee's first stem cell treatment. Lets hope it goes well.....
