Hey everyone- again, I'm sorry this has taken so long to update!!  Lexi is approaching the one year mark since her stem cell treatments in China and we have had some progress- not alot, but enough that we feel it was worth the trip.  Lexi told us that she feels as though she continues to improve and we are awaiting the most recent report from her eye doctor to see if they feel the same way.  I am not seeing much more improvement than we had in December and that's ok!  She is doing really well and is finishing up fourth grade at Evans City with good grades and some new friends.  We did recieve some great news in that Lexi will be able to stay at Evans City for middle school so she is really excited about that. 
Alot of people ask us if we will go back to China for more therapy and honestly I don't know.  We do feel like we made the right decision to go but we don't know if another trip would be worth it.  Hopefully more work will be done here and there will be something  for us to try eventually at home.
I am planning on taking down this website at the end of June- if anyone would like more information please email me at hdsw25@yahoo.com.

Thank you again to all of you who helped us with not only finacial support but your time and prayers as well- none of this would have been possible without you! Thank you!!!

Sorry it has been so long since the last post!!  I hope everyone is enjoying getting ready for the holidays, we are getting there, things have been a little crazy for us lately!  We did go to the eye doctor again for another follow up and there was some more slight improvement.  The time before she was able to see and locate the penlight up to 10 inches from her eyes, this time she was up to 16 inches away so the stem cells do still seem to be doing there job.  Hopefully with more time we will continue to see more improvements, they did say it could take between 6-12 months to see the full results.  It is hard with a child who has never been able to see- she really isn't able to say that she sees a color or a shape because she really has no clue what those are!  Thank again for all of your help and prayers for Lexi we have really appreciated it all!  Have a Merry Christmas and Happy New Year!! Heather

Hey everyone, so sorry that I havn't given any updates recently!  There really has not been any more major changes in Lexi's vision since we have come home from China.  She is still noticing lights looking brighter, the sun now bothers her eyes so she wears sunglasses outdoors- this is new, before the treatment she could look right at the sun without a reaction.  They did tell us that it will take 6-12 months for the stemcells to do their job so we are hoping for more changes!  Lexi goes back to the eye doctor this month on the 15th so we'll see what she has to say. 
Lexi started 4th grade this year and is so far doing very well, she is missing some of her friends that were in her class the last couple years, but is making new friends.  Lexi also started playing the trumpet, she is really enjoying it and is playing very well for just beginning it.  She also has started taking her Tap dance lessons again this year with Ms. Terri at Dance with me by Devyn.   Lexi was on the cover of a local magazine called IN Seneca Valley and In Mars with an article inside, there were some misprints in the article but overall it was very well done.  That is really about it with us, I hope all is going well with all of you and I will post again once I have something new!  Take Care, Heather

We were interviewed by Channel 11 news this afternoon, we should be on the 10:00 news on Fox 53 or if they don't get it put together in time it will be on Channel 11 tonight after the olympics.  I will post a link to the story once they put it on the website. 

Hey everyone, I know I've been promising more pictures of China for awhile now, but because there are so many of them I couldn't put them directly on the website.  I put them up on a photo sharing site called flickr, here is the link that will hopefully take you to them:

http://www.flickr.com/photos/lexisfirstsight/

Hopefully this works, if not I'll keep trying!  Things are going pretty well for us, we are just enjoying our summer.  Lexi is having fun with her friends and family that is she is busy spending lots of time with.  Talk to everyone later, Thank you!! Heather

Hey everyone, we finally got the results from Lexi's eye doctor- and it's good!!  I am just going to copy the paragraph that is in the letter for you rather than trying to put it in my own words so here it is:

Alexys historically has been able to perceive light without perception.  Today, Alexys was able to appreciate light perception from a distance of 10 inches from her face using a pen light. 

This is from Dr. Anderson of Pediatric Ophthalmology and strabismus, Inc. Surgical Associates, Lexi loved her, she was very nice and encouraging, we also really like Dr. Hughes but she was booked.  We go back to the eye doctor every 3 months, but I will continue to try and monitor her and let you all know what's going on as I find out.  Thank you again for all of your support- without it none of this would have been possible!  Heather

We 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!

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

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

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

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

Things 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

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.

We 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

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