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Friday, July 18, 2008
Went to the Eye DoctorWe had Lexi's first eye appointment on Wednesday- I don't really have any new information just yet. We saw a
new doctor, so she needs to read the other doctors report and compare her findings then she will send us out a letter that
I will pass on to all of you. I did notice that Lexi is able to tell which direction a pen light is shining from much
better than she was able to before the treatments. I'm hoping to have the results soon, maybe next week. In
the mean time I'm going to try and start posting more pictures for everyone of our time in China. Again, Thank you
so much for your support!
9:55 pm est
Thursday, July 10, 2008
Lexi is home!Lexi, Gram and Pap Pap have finally arrived home! They got in last night around 10pm, they were supposed to have come
home on Tuesday night but they ended up stuck on the runway in Hangzhou so they missed their flight in Beijing! When
mom called and told me I could hear their disappointment- I know how badly they wanted to come home! Air China put them
up in a hotel in Beijing and they had to arrive early at the airport to make sure they were able to get a seat on yesterday's
flight. So after quite the ordeal they have made it! Lexi is doing great, she slept all night last night and is
now playing with a very happy little sister! Lexi does look a little tired, I know it took me a couple days to adjust
to the time difference so I expect the same for her, although she wouldn't ever complain about it! Lexi ended
up receiving 6 Stem Cell treatments total- 2 IV and 4 Lumbar treatments, I really happy we were able to have an extra treatment
while we were there. We are noticing some results, she is more sensitive to light and noticing toys that have lights
that she never noticed before. We have a check up at the doctors on Monday and an appointment with the eye doctor
on Wednesday so hopefully they will notice some results that I will be able to get to all of you. Before she left China
the doctors there noticed that her pupils were dilated more quickly than they did when we first arrived. I will keep
you all posted! Thank you again for all of your support, Heather
10:12 am est
Thursday, July 3, 2008
Almost Home!Hey everyone sorry I haven't posted in a few days! Well, I'm home!! Back in the good old United States, my dad
has taken my place over in China with Lexi and my mom so that I was able to come back home and take care of Lexi's little
sister Emma. It is so great to be back here, although I do miss Lexi, but I know she is in great hands over there!
Lexi had her fourth treatment on Monday- unfortunately she ended up having a reaction to the treatment and was sick all day
on Tuesday. She is doing much better now though and hopefully she won't have anymore problems. Lexi is scheduled
to have what was supposed to be her 5th and final treatment on Friday, but we have decided to get her one more IV stemcell
treatment on Monday before they come home on Tuesday so she will be getting a total of 6 treatments now- 4 Spinals and 2 IV's.
Lexi is in great spirits and is really happy that she is getting an extra dose- even though it requires yet another "pinch",
but she says needles are not a problem anymore- she's used to them! They really haven't been doing much, there
is a lot of down time over there so boredom is an issue- we have watched so many movies! I think we'd
do pretty well at Disney Trivial Pursuit at this point! Lexi's new favorite past time though is light tag!
This is something she was never able to do before and it involves us turning out the lights in the room and using a penlight
to shine a light on the wall- Lexi then finds the light with her eyes on the wall and touches the spot! This is amazing
progress and something we never would have imagined her doing before this treatment! The doctors have again reminded
us that it will take 6 to 12 months to see the full effect of the treatment, but this is definitely a start. Thank
you so much to all of you who have sent your support either through the guest book or by emailing us, I know they love to
hear from all of us at home! Lexi will be coming home around 10:00pm Tuesday, July 8th so only 4 more days to go!
Thank you again for all of your care and support, Heather
11:30 pm est
Thursday, June 26, 2008
Third Treatment Down!!Lexi had her third stem cell treatment yesterday afternoon, it went great. She is such a brave kid, all the doctors
and nurses have been commenting on how pleasant she is during the procedure. Kirshner Ross-Vaden video taped the treatment
yesterday for us to see what actually goes on in the room (we aren't allowed to go in the spinal treatment room with her),
Lexi is given a sedative through her IV, but you would never know it- her little mouth is still going a mile a minute!
Kirshner is going to try and make us a copy of the video so if I can I will try to upload it for everyone, probably won't
happen until we come home though, the Internet connection here is very finicky and slow!! We are seeing a very
slight change in Lexi's vision, Tuesday when the doctors came in they did their usual and shined a light in her eyes-
for the first time ever she squinted and closed her eyes at the light! It's a small step, but at the same time it's
huge, it's showing us that something is happening. We know it could take as long as 6-12 months to see major changes
so we aren't worried. We really haven't been up to much, we did get to go to West Lake- which is a beautiful
lake with lots of older buildings around in and on islands in the middle of it. I did get some pictures that I will
try to upload later but the weather here is always so hazy it's hard to see much in the photos. Right now
the highlight of our days is waiting for someone to come in and take our lunch and dinner orders, we can choose between- McDonalds,
KFC, Pizza Hut, or Chinese Food- I can't wait to come home and make spaghetti!! Lexi has her next treatment
on Monday, I will keep everyone posted- Thank you so much to everyone who has left us messages of support!! Take care,
Heather
2:42 am est
Saturday, June 21, 2008
Second Treatment done!Lexi had her second treatment yesterday afternoon. It was her first spinal injection and she did really well, we
are very proud of her! They gave her an IV and some medicine to make her sleepy, but she said she was still awake and
felt the pinch. They inject a syringe of stemcells directly into her lumbar region of her back and also hand a small
IV bag of stemcells to go into her bloodstream. We were worried that she may have a reaction again, but luckily she
did great. After the treatment she had to lay flat for 6 hours, she was allowed to roll on her sides but she was
not able to lift her head in order to prevent a spinal headache. We were thinking about telling her she wasn't allowed
to talk but decided against it. We took her to the hotel and the store today just to get out of the hospital room and
stretch our legs a little, tomorrow we are hoping to go to West Lake for some shopping and sight seeing. The weather
here has been very humid and hot the past couple of days and we found out this is their rainy season so we are hoping for
no rain tomorrow and a little less humidity! I will try to post some new pictures tomorrow night if we are able to get
out! Talk to you soon, Heather
5:17 am est
Thursday, June 19, 2008
UpdateThings have been pretty slow around here, the days really drag on! We did finally leave the hospital yesterday to do
some shopping in downtown Hangzhou. It is nothing like shopping in America! Our driver, Mr. Lee, took us to Hangzhou's
shopping district- we were expecting an indoor, air-conditioned mall- well what we went into were various warehouse type buildings
that were several stories tall without air-conditioning and low lighting. The clothes are all whole sale, main samples
of what they have hanging on the wall and the different sizes in bags on the floor, each store is about 10'x10' and
most of the stores have the same things as the one next to it. There are different buildings for each type of thing-
adult clothing, children's clothing, shoes, etc. I tried to buy Emma some things but you have to watch because for
her age most of the clothes are missing fabric in pant area for potty training- the kids are allowed to just go to the bathroom
wherever they are, very different! Another thing that is different here is that no price seems to be set in stone, you
can barter down prices- our driver and escort for the day Mr. Lee was very good at that! We didn't stay there long,
we ended up going to Silk Street, Hangzhou is known for it's silk. We really enjoyed ourselves there, the street
is about a mile long with tons of stores and all they sell are things made out of silk. I posted some pics at the bottom
of this page, the statues are all from Silk Street. We bought quite a few things there at great prices so we left happy! I
was glad to arrive back at the hospital safely- I don't think I will complain as much about drivers in our area anymore,
the driving here is crazy!! They cut each other off, drive on top of the center line, and honk their horns constantly.
The people on motorbikes are everywhere and we say our first motorbike vs. car accident- I don't think anyone was hurt,
but they just go without looking it seems. Tomorrow is Lexi's second treatment, it will be a lumbar puncture.
After her first one she did have a slight reaction- low grade fever, upset stomach and some dizziness so we are hoping that
she does better after this one. After the treatment she has to lay flat without a pillow for 6 hours so we'll see
how she does with that, I did download some new audiobooks on her ipod so I hope that keeps her entertained. I will
let you all know how it goes tomorrow afternoon. Talk to you all soon, thank you so much to all of you for your support!
Heather
5:23 am est
Monday, June 16, 2008
First treatment down!Lexi had her first Stem Cell Treatment today! It went really well, it was through an IV in her hand today- she was
really nervous about the IV but once it was in she said it wasn't bad at all! The infusion only took about 45 minutes
and it was done. Lexi has to leave the IV in until tomorrow morning just to make sure she doesn't have any type
of reaction. Starting tomorrow she will begin Physical Therapy everyday but Fridays and Sundays from 11:00 to 11:50
and Friday will be her first lumbar infusion of stemcells. So far things are going well, we are starting to get settled
in- we haven't left the room much. We have gone to the local store to buy snacks, and mom and I finally found coffee
that we can drink this morning so things are looking up! Lexi doesn't like going for walks much, here they set off
random fireworks through out the day- they told us that they do this anytime something good has happened to them, such as
buying a new car, opening a restaurant, getting married and so on. They really freak Lexi out, that and they are constantly
honking their horns at anything and everything! I posted before that I thought motorbikes outnumbered cars 3 to 1- I've
changed my mind on that, it's more like 15 to 1, motorbikes are everywhere! They don't wear helmets and
entire families squeeze on them- I'm talking newborn babies, toddlers sitting on their parents laps! It's crazy!!
I can't imagine Emma sitting still enough on my lap that I would be able to drive one of those things on a busy road!
No Way!! I'm going to post some more pictures at the bottom of this page from this afternoons treatment. I
probably won't post again for a few days, Thank you for your support, Heather.
3:24 am est
Saturday, June 14, 2008
First Treatment ScheduledWe met with a large group of doctors yesterday morning, Dr. Mary will be Lexi's primary doctor here. Dr. Mary is
very nice and she speaks pretty clear english so that is great. Lexi will have her first treatment on Monday and the
stemcells will be administered via IV for this one. We did go out to the hotel and the store called the RT Mart, which
is basically a huge super wal-mart, it's 3 stories with just about everything you could need. The hotel is on the
top floor of the building with the store and it is only a 5 minute walk from the hospital. Yesterday was a rainy day
and kind of chilly, today it is hot and humid!! We are very happy that we have air conditioning in our room, they do
not air condition the hallways. We have been passing the time today with reading books and watching movies- at this
rate we will be out of movies in no time! Lexi does not want to go outside for a walk because they honk their horns a
lot over here and they keep randomly setting off noisy fireworks today. You wouldn't believe the number of
motorbikes, scooters, and bicycles here, they outnumber by around 3 to 1. Pedestrians don't have the right of way
here so everyone honks their horns at us when we try to cross the street, they drive crazy here! At the store we are
the center of attention- everyone stares at us as we go by them, it's so strange being watched constantly while you try
to buy something! I want to let you know that there is going to be a Poker Run to benefit Lexi on Sunday, June
22 at the Mars VFW. There will be draft beer, pop, food, a 50/50 auction, chinese auction, bake sale, games, raffle
and a poker hand. The ride schedule is: 10am drinks and donuts at Mars VFW, 12pm 1st bike leaves from the VFW, 4pm everyone
back at the VFW. Pre-Registration: Single $10.00/ Couple $20.00 Registration at VFW: Single $15.00/ Couple
$25.00 To register please send check or money order to: Don or Launie Volkman 202 Johns School Rd. Renfrew
Pa 16053 Questions call: Don at 724-553-8378 or Launie at 412-969-0030 Non-Riders are Welcome!! The event is Rain
or Shine. We are not doing much this weekend so I will probably post again Monday after her treatment. Thanks, Heather
3:58 am est
Thursday, June 12, 2008
We're Here!We are officially in Hangzhou, China! It took us about 27 hours to get here- a little long!! We arrived here around
1:30am Friday morning- that would be 1:30pm Thursday at home, we are 12 hours ahead of you. So far everything is going
well, today Lexi will have to have some bloodwork done and an exam by the doctors. We are hoping that once all of that
is done she will be able to go with us to check out the hotel that my mom and I will be taking turns staying at. We
are also going to the bank to convert some of our money into RMB's and go to the local store. I will post later
tonight with hopefully some pictures of the area and let you know how our first full day goes. Thank you so much to
all of you who have made this a reality for us! For those who want to email us personally feel free to email me at:
hdsw25@yahoo.com. I will do my best to get back to everyone as quickly as possible! Heather
7:49 pm est
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