8-21-08

Still no results from Lydia’s VER a couple of weeks ago.  Apparently results have been read and interpreted, waiting for the transcriptionist to get to the bottom of the pile of tapes. 

Otherwise, Lydia is doing very well.  She had her first day of school today, she is now a 1st grader.  The paragraph below is some very exciting news about her vision.  I thought I should also mention I tried to test her vision myself at my optometrist appointment . The big E was projected on the wall , I held her a different angles and didn’t tell her what she was looking at. Unfortunately, all she was able to see was the light from the projector.   Just thought that might keep things in perspective for everyone.  Oh well, the news below is very exciting and more functional for her right now anyway.

We took our annual before school vacation in St Louis and had a lot of fun!  Our highlight was the Zoo.  Lydia was able to see the Asian elephant and the black rhinos.  They were all back in  corners until we came up to the fence, then they made their way right up in front of us.  The elephant put on a little show with his trunk, flapping his ears.  They seemed to really know Lydia wanted to see them, and she did!!!  She pointed to each of them and said, “Wow I can see him!”  She was able to follow each animal as they moved around.  It was so cool!   On our way from moms house to St Louis, I asked her if she was able to see anything out the window and she said “I can see the sky and I think that is grass”  The landscape outside was rolling hills of beautiful green trees and a bright blue sky.  It is so nice to know she is beginning to have an understanding of the world around her.  She is still very much visually impaired and needs to be prompted to use her vision, but she really tries when I ask her.  I am always a proud momma. 

Thank you all again for your prayers and well wishes during this very exciting time!  I will update when I have some news.

2 comments August 22nd, 2008

8-5-08

We are having a great summer!  We went to Florida so Lydia could experience the beach. I had been promising her to go for the last year, finally when summer school let out we set off for St Pete Beach. She is such a good traveler. She had a good time experiencing the ocean,making sandcastles with mom and granny, learning to dogpaddle in the pool.  She has also been busy travelling to visit lots of family this summer.  There seems to not be enought Lydia to go around- everyone wants to be near her!

Lydia had a vision test today called a Visual Evoked Response.  She had to sit in a chair with electrodes(sensors) hooked up to her head  to measure her brain and nerve response to visual information and watch a television screen. She got to wear a pirate patch over her eye, even said “Arg!!”   The screen she watched looked like a black and white checkerboard that changed or reversed the black/white squares so it appeared to be moving. I could barely watch it myself-nauseating!!  They put the screen at about 5 feet away then almost in front of her face.  I didn’t get to see the computer screen but the tech doing the test said the closer one was “producing some measureable adn reproducable waves”. Of course he cannot interpret any findings, we will have to wait a week or so to find out the results, the neurologist will have to read and interpret the test first.  Lydia did well with the test, only got upset because she thought she would have to wear a sticker patch over her eye – had to do that at the other doctors office in St Louis the last time she had it over a year ago.  After she figure out nothing would hurt she was just fine, almost fell asleep.  Our appointment lasted about 1 1/2 hours.  I will let you all know the results when I know next week.  She has an appointment on Thursday where they will sedate her and dilate her eyes, take pictures of the head of the optic nerve and compare previous pictures.

Thank you all for your continued support and prayers. I will keep you updated!!

1 comment August 6th, 2008

6-24-08

Subject: exciting news about Lydia

What a wonderful morning it has been!   Lydia has hit a major milestone.  I have waited for years for this to happen.  Today, Lydia saw my face. She made out my hair,eyes, nose, mouth,ears. Then she looked at herself in the mirror and was able to see herself.  She even watched herself smile!

I have nothing much more to say except PRAISE GOD!!!! This is an absolute miracle! 

Thank you all so much for your continued prayers and support.

Juli

3 comments June 25th, 2008

4-28-08

Well, we have been home for almost 3 months.  I believe we have readjusted to life.  No more waking up at 3am starving :)!   I am back to work full time and Lydia is back to school fulltime.  She continues to do well with her school work and has been heard more than once when she had to go home/stay home from school due to illness, “I want to stay at school and learn!!!”  I took about 10 minutes to get her out of the school nurse office and into the car.  She is such an avid learner.

So to the part everyone wants to know – how is she doing with her eyesight?   Well, Lydia has made some definite progress in the last few weeks.  A couple of weekends ago she was checking out her new big girl booster seat in the car, I was cleaning out the front and I poked my head in between the seats.  She said”Hi mom!” She said she saw my head and knew it was my head because she saw darkness in the shape of a circle.  Later that evening we she was playing with her Hello Kitty CD player which is pink and has a white kitty face.  She began to swing it on a hook and was watching it swing back and forth.  She said she could see darkness moving and then asked what the white kitty face was, I explained it and it was the color white.  She  was excited to finally learn a color!  About a week later, I was exiting a dark room into a dark hallway wearing a white shirt and she looked toward my torso and said “I see white!”    This weekend she randomly saw 2 cars parked on the street when we were out for a walk .  Also, as we were playing a game with 2 differernt colored balls I challenged her to look for hers with her eyes.  She was able to locate hers and mine, she knew they looked different (one orange, the other purple) and consistently knew which one was hers and which one was mine by their color.  I got to explain the different colors to her.  Tonight we played the same game with her locating the correct colored ball again, and again was consistent. Pretty cool……..

Thank you again to everyone who has given us support in so many ways, it is very much appreciated.  You are all a part of an extraordinary event. 

I am not sure when I will update the blog again, we are trying to live a “normal” life and just “be” for  a while.  I will certainly update periodically so please check back in a few weeks!   THANK YOU!!!!!!!!!!!

April 29th, 2008

more good news

This morning, we were lounging in bed, my hand happened to cross her face and she said “I just saw darkness”.  I then asked her to watch the darkness with her eyes.  She was able to slightly track the darkness from my hand midline to right both directions!!! WOW! What a great week this has been. 

6 comments February 29th, 2008

more progress

For those still following Lydia’s progress online, we have some pretty cool news.  Lydia continues to see light and is seeing light of less contrast or brightness.  Blinking lights are the easiest to catch her attention.  I found some fun tub toys that have blinking and continuous light options.  She is able to locate them pretty easily in low light and moderate light conditions (makes bath time a little more fun,too).  I went shopping for some more light toys today, found a glow in the dark volleyball-wasn’t sure it would work since it wasn’t an actual light. But, the amazing Lydia saw it anyway!  First we were in the bathroom with almost no light and she reached for it very accurately 2 times (I tried to be tricky)  and then she saw it in the living room with 2 lamps and the TV on (American Idol/Ryan Seacrest was on and she HAD to keep the TV on).  I was really amazed she would notice it, she was pretty close to it, but you have to give her some credit!  This is really getting to be fun and i can’t wait to post her next amazing feat!  Keep those prayers coming, we can never have enough!

2 comments February 29th, 2008

Aaahhhhhhhh, home

So we have been home for about 2 weeks.  Finally we are not waking up at 4 am starving.  Finally we are beginning to adjust to our normal schedules.  I am sure Lydia has gained back the 4 lbs she lost, for sure I have gained the 7 lbs I lost.  It has been really wonderful to go to grocery stores and not see live animals and smell the stench of decaying animal flesh!  We are so glad to have all the comforts of home. 

Lydia was a great traveler, we had a long flight back to the US and a delayed connecting flight to St Louis.  She fussed less than the rest of us, I think she was just happy to be on the way home away from IV’s.  Our flight arrived in STL around midnight,  only 1 missing piece of luggage which was amazing after watching the way luggage is “sorted” after customs in Chicago. We stayed in St Louis at my friends house (thanks Curt,Shell and Ben) and slept until 4pm that day.  Unfortunatley, they had the flu and we had the tail end of some Chinese cold, so we decided to say our hellos and goodbyes from down the hall to each other.  Seems there was no cross contamination and we all hope to remain healthy.

Lydia’s sight continues to improve.  She is not constanlty requesting sunglasses as she did before, she is more tolerant of sunlight.  The day we arrived at our home, I turned on the TV and Lydia said “there are lights blinking on the TV”.  She has never mentioned anything about the TV before.  In the middle of the night last week, we were awake at 3am, Lydia said “What is that light out there?” and pointed to the window.  She was seeing the street light which is a half block away.  That same night we were still up and she said “there is a light on my CD player, has that always been there?”  She was referring to the small red light that illuminates when it is plugged in.  Today,during daylight hours, she was noticing flashes of light on the TV again.  They were of less intensity and contrast/brightness than the first time.  SOOOOOOOOO exciting.  I can hardly wait for the next development.   Look out Ryan Seacrest, she can hardly wait to see you!

Thank you again to everyone who has made this possible!!!  So many people to thank in so many ways!!   I hear there have been some pretty amazing poker games in Belgrade lately….thank you guys!!  I will try to continue to update the blog as long as there is something to report.  Not sure how long the site will keep us.   Thanks again!

5 comments February 21st, 2008

2-5-08

It is our last evening here.  Bittersweet.  We are so looking forward to returning to the comforts of home and seeing our loved ones,but a little sad to leave the wonderful people we have met.  So many incredible people from around the world facing their own challenges.  I wish each and every one the best and pray  they continue to carry this spirit of hope we have found. 

Seems the snow we had over the weekend is melting and we will be leaving as scheduled.  I still have some packing to do.  I went shopping with “the girls” today and got a few things to bring home.  Of course I got Lydia some things for being so wonderful and brave.  This evening she has been walking up to the nurses and pretending to take their temperature, says they have fever and need an IV.  She then proceeds to “put in” an IV and repeat “no pain” as they have said to her for the last month.  Something tells me it is time to go…………..  She says the only thing she will miss is her new little baby friend she has made-he is a very sweet 3 month old and she loves to hold his hand and caress his head.  So cute!

I will update the blog from home periodically and keep everyone informed of the progress Lydia continues to make!   Thank you all again for the incredible support which came in many forms, we couldn’t have done this without you!!!!!

Bye Hangzhou! 

9 comments February 5th, 2008

2-2-08

Lydia had her final stem cell treatment yesterday.  She is doing well today.   We are all glad there will be no more needle sticks! (especially Lydia!)  After a 20 minute “discussion” with the doctors yesterday, it was decided for Lydia to go to a different OR for sedation and her stem cell transplant.  She has had no sedation at all for previous lumbar punctures (only local anesthesia -similar to the dentist) and has felt the needles for the lumbar puncture  most every time.  I would say she has been exceptionally brave throughout this whole process. 

 It has been snowing here for the last 2 days, probably have 2-3 inches of snow.  As I listen, sounds like it doesn’t stop too many of the crazy drivers out on the road “beep, beep,beep”.    Hope this weather doesn’t continue.   We are much further south than the area you may been hearing about on the news.  If the weather allows we plan to do some souvenier  and “knock-off” shopping on Sunday at the West Lake area.  As nice as everyone has been, we are determined to leave on Tuesday.  It will be great to be home!

17 comments February 2nd, 2008

1-31-08

Yes, I realize it has been a long time since my last post.  I apologize.  Things have been challenging as of late, better now.  Looking forward to our return on Tuesday.  No place like home :)  

Fireworks go off here at all hours of the day and night as they are preparing for their New Year and Spring Festival – I have been told this is like our Christmas-more fireworks!  Anyway, for a couple of nights fireworks have been set off very close to the hospital.  Lydia says she can see the fireworks in the sky, “kind of like they are blinking on and off”.  She just continues to improve.  Quite amazing!!

Quite a few people have left over the last few days, it was very nice to get to know them and I will enjoy following them through their blogs ( as long as they update more often than I do!)

 VERY BIG THANK YOU to everyone that attended Lydia’s Lunch in Belgrade.  Wish we could have been there to see everyone, your support is overwhelming!

12 comments January 31st, 2008

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