Tatyana’s ROP Blog

I haven’t written a post in a while because to be honest I am totally speechless. Tatyana’s vision progress is so amazing I am in total shock and I am not sure how to explain it.  She is doing daily activities with more ease.  For example, if she is needs to find something she dropped on the floor, BEFORE (meaning a few months after stem cell treatment), she could find it but it would take a little effort and verbal clues, NOW, she can find things with no or very little verbal clues. 

One new thing she has learned is, if she wants something to drink I have taught her to go get a cup, go into the refrigerator, get her drink, take the cap off the drink, then poor into the cup.  A few times she spilled the drink a little but that was OK… now she realizes that she needs to use her vision and be careful. Now she can poor into the cup without spilling.  She is so proud of herself and so am I. 

She loves to play chase with her friends.  She is able to chase them even if they run and quickly turn another direction, she can turn also and chase them.  One day, one of her little girlfriends, who was playing chase with her, ran up to me laughing, happy and out of breath saying “Miss Andrea, Tatyana can see me”  I said “yes she can” then she ran off to play with Tatyana more.  I thought that was so cute.
 
 Another improvement is, if you wave at Tatyana and you are standing close to her she can wave back (without verbal clues). 

One day, without her knowing, I moved one of her old toys (a kitchen set toy) out of the kitchen and into storage.  Hours later Tatyana came into the kitchen playing around and stopped saying ”HEY…… WHERE IS MY KITCHEN SET”  I came into the kitchen to see if she really saw it was gone. Sure enough, she was standing by a table looking at the empty space where the toy used to be. I almost fell on the floor with joy.  I gave her a big kiss and then showed her where I put it.  Needless to say, it’s back in the kitchen. (smile)..

The other day, I took Tatyana to see a movie “Toy Story” at the theatre. It seemed as though she was watching the movie but it is hard to tell if she was seeing pictures or just listening or maybe both.  After the movie was over we started to pack our things to leave and she pointed at the movie screen. I asked her, what are you doing?  She said “I need to turn off the TV”  I chuckled to myself because that was so adorable.  I explained how we didn’t need to turn it off, the movie theatre employees will do that for us.  (smile)…

She still knows her colors, most primary colors since those are the easiest to identify.  She is still learning braille at school but I have tried to introduce print letters.  She is starting to learn the letters “A” and “O”. I am thinking that learning print letters require a lot of detailed vision and maybe she isn’t ready for that yet.  I will wait to see if that skill develops more later.

Clearly, the stem cells are still working and also Tatyana is learning “how” to use her new vision.  I believe the older she gets the better she will be at learning how to use her vision. 

I would say that Tatyana has graduated from being a visually impaired child to a low vision child.  I am so thrilled about this.  THANK YOU GOD!

More updates coming soon,

Take care,
Andrea
hope4vision@hotmail.com

Hey Everyone,
I wanted to share some exciting news about my little one.  She started kindergarten and they are learning about the colors of the rainbow.  Each day the students wore a different color of the rainbow.  One day the class made paper rainbows in class.  Tatyana made a rainbow and the teacher wrote a note on the back of the rainbow.

It says…
8/19/09
Did by sight today
We gave her two choices
and she got them ALL right.
We are soooo proud of her.
Ms. Ellison 

I am so glad I didn’t listen to discouraging doctors. If I did, Tatyana would still only be seeing light.  NOW her whole world has opened up. THANK YOU GOD.
 

I have been struggling what to write following our check up on August 7th.  One reason I am struggling is because I don’t know if our doctor reads my blog but I don’t think he does. The other reason is that I don’t want my words to discourage parents who are following our case.  So after much thought I decided to just write exactly how I feel. 

Well, here I go……

I am not sure why I thought that our doctor who has always been very much against stem cell treatment would give us a honest progress report.  He examined her, looking at her retina and optic nerves and said everything was the same and stable.  I totally didn’t believe him because he spent a very long time looking at her right eye.  He definitely saw something different but told me he saw nothing new.  The exam was totally subjective and I can’t believe I thought for a minute he would be on board with our progress. He asked how is her vision and I was excited to tell him she is learning her colors, she can wave at people, she can see bubbles in a sink, she can find and pick up objects etc.  He just gave me a half smile and said “that’s good”. Based on his reaction I am wondering if he thinks he had something to do with her new vision.  I really hope he doesn’t think that because Tatyana could not see (except light) at our last check up 3 days before we traveled to China for treatment.  All in all the doctor’s appointment was a total waste  time.

Now on to the good part……
Tatyana is still showing great improvement with her vision.  She started school and they are  learning the colors Red and Yellow. Because of her new vision she is able to answer questions about colors. She even now knows, by sight, which fruits are red, green or yellow and can pick them out in a grocery store.

I am so very happy I didn’t listen to my doctor and decided to have stem cell treatment for Tatyana. Especially now since she is starting kindergarten and this is the most important time for her to learn basic academics.  We still have 6 months left for continued improvements so I am looking forward to more progress. 

Thank you to all who have followed my story and if you have any questions please feel free to email me.

Andrea
hope4vision@hotmail.com

Gosh, it seems like a long time since I have posted updates.  Sorry about that.

Everything is still going good with Tatyana’s vision.  I haven’t seen huge improvements but the good part is that everything is stable. She is still working on learning her colors and how to match colors in piles of similar colors.  School is starting soon and she will be in Kindergarten. This summer we have been reviewing braille letters. Hopefully this school year we will be able to couple braille letters with print letters in the hopes that she will start to recognize print letters (I pray).  Her newest accomplishment is she now waves at someone (to say hello) if someone is waving at her. It’s so cool to see her do that. 

We have a doctor’s appointment coming up next week. I am excited to hear his thoughts on her changes.

Gotta run

TTFN (Ta Ta For Now)

Andrea
hope4vision@hotmail.com

Hey everyone,

Things are still going great with Tatyana’s vision progress.  Many of you have asked when we are going to have an eye exam by her eye surgeon.

Well.. drum roll please…….

We have an appointment scheduled for August 7, 2009.

I am hoping he will be able to give me some updates on the condition of her retinas, optic nerves, scar tissue, the health of her eyes etc.  I am already seeing that her eyes are bigger and look stronger than before.  Also her eyes don’t roll around anymore so those are the physical changes I can see but I am counting on him to tell me the changes of her inner eyes.

I will be sure to post his findings after the appointment.

Talk to you again on or before August 7th.

Andrea
hope4vision@hotmail.com

We are now entering the Twilight Zone.

Sometimes I think I am in the Twilight Zone when I think about Tatyana’s progress I am so amazed. 

Tatyana still continues to show improvements in her vision.  I have to admit it’s been a roller coaster while observing her because one day she will do something really fantastic like knowing her colors then the next day she wouldn’t know her colors at all.  As a her mother, I am always hoping and praying for the best so that was very frustrating not to see consistent progress. What I have noticed is improvements cannot be measured daily but should be measured as overall  improvements.  Sometimes I have to think back a month or 2 ago to measure if she has more vision now than she did before and she definitely does!  As for colors,  she does know them, but if asked ”what color is this?” she will not say it out load however, if you give her 2 choices “Is this a red block or a Yellow block?” she will say the correct answer 100% of the time.  I was measuring her improvement by her saying the color out loud but I believe that will come in time.

When we go shopping and we start walking in the parking lot back to the car she can point to where the car is.  Sometimes if there is another car the same color parked close by she may get it wrong but I ask her to try again and she does it.

Here is a picture of her watching TV (the actual screen) instead of only looking at the speakers on the TV (as she did prior to stem cell treatments).
 

She is very activity now.  She likes to run and skip around and even pulls me while holding my hand instead of me guiding her.  I often have to ask her to slow down.  It is so wonderful to see her be so happy. I believe her confidence in running and skipping is from her increased vision.

This summer Tatyana is doing gymnastics and swimming.  She LOVES both sports.  Before stem cell treatment while in gymnastics Tatyana would need to hold on to the teacher while doing her obstacle course. Now she is confident to do the obstacle course with minimal help from the instructor. This is a huge accomplishment and she is so proud of herself (and so am I ). Below are a few pictures of her at gymnastics. Note: some pictures are not focused because she was in motion at the time of the snapshot.

The other morning she woke up and wanted me to wake up also so she said.. “Mommy it’s time to get up it’s daylight outside”  It was just daybreak and the blinds were closed.  I, of course, woke up with a smile that morning.

The other day in the car, she was sitting in her car seat she said to me “Mommy the light is on back here” she was very certain about this and wanted to make sure she repeated it.  I looked up and the overhead light was on meaning a door on the car was not closed all the way. 

At times I see her walk around objects on the floor.  The first time I saw her do that I thought I was imaging it but she did it again another day. 

Also, when she is playing with her friends she now can look at them or look in their general direction to talk to them. If someone walks by her she often says ”Hello” looking in their general direction. She is a little social butterfly. (smile).

All in all I am learning how to measure her improvements, not day to day but by overall improvements.  In the future, I will not be shy to post improvements for fear that it’s a one time thing.  I have learned that if it happens one time and then seems to go away, rest assure those same improvements will come back and hang around for a longer time until they become permanent improvements.

I can proudly say I see permanent improvements.

It’s great to be in the Twilight Zone (smile)

Andrea
hope4vision@hotmail.com

Hi Everyone,

Tatyana continues to improve in her vision.  She received her new glasses (+2.5) and she LOVES them. 

I wanted to share a cute story if you don’t mind.

The other day Tatyana was washing her hands with soap in the sink.  After she was done she turned off the water, I gave her a towel to dry her hands then I walked out of the bathroom.  She stayed there in front of the sink and said to me “Mommy, the water is still on”  I said no it is not (I could hear the water was off).  She said “Yes it is.” So I walked back into the bathroom to see what she was talking about and I saw her hands were covered in soap bubbles and she looked at me and said “SEE”.  I smiled and said that’s soap bubbles.  She said OH.  I said to myself that was really cool she saw that.
Then the next day same thing… she washed her hands and at the end I walked away and she said “Mommy there are soap bubbles in the sink”  I said “is there”?  She said “YES”.  I checked, and there were those soap bubbles.

I am not sure but I think she is watching TV now.  She stares at the screen but it is hard to know if she knows “what” she is looking at OR if she is just listening.  Before stem cell treatment she would “watch” TV by looking at the speakers. She thought that is how you “watch” TV.  Now she actually looks at the screen.  The other day she turned the TV on but the sound wasn’t on.  I was in the other room.  I noticed that she was being very quiet which is strange for her (she is very talkative) (smile).  I entered the living room to see what she was doing and she was looking at the screen on the TV without sound.  I guess that means she is actually seeing the pictures on the screen.

I believe the little stem cells are still working. 

In a few months I will make an appointment to have an EUA (exam under anesthesia) and see if the doctor sees a difference in her optic nerve, retina, scar tissue.  I will be sure to post the results. 

Thank for sharing this journey with us.

I will continue to post updates on my little Angel.

GOD BLESS!

Andrea
hope4vision@hotmail.com

Hello everyone,

I wanted to share some exciting news. 

Before I tell you the good news let me give you some background.

Before stem cell treatment Tatyana was wearing both contact lens and glasses both at the same time in order to see.  With both glasses and contacts she could see light and VERY large objects.  She would never tell me what she is looking at. The reason for both contacts and glasses is because in previous surgeries Tatyana had both internal lens removed in an attempt to get the retina to attach.  So she has always needed an extra boost of power to see. Her contact lens were a +32 and the glasses +5 so a total of +37 strength.  When I tell people this they can’t believe that much power is even possible.

While we were in China the doctors advised us to let her try to see without her glasses and contacts while her eyes are repairing.  And much to my surprise after a few stem cell injections she was seeing better than she has ever seen in her life.  It wasn’t perfect vision but very much improved vision. On Tatyana’s discharge papers the doctor wanted us to wait a few months before getting her eyes examined for glasses to let her vision improve more.  He also mentioned that her vision will change rapidly over the next year so we need to get frequent examines. I took the doctor’s advice. That was in March 2009.

Now for the good news.

Over the weekend I was thinking to myself, I wonder what would happen if I let Tatyana wear her old glasses (+5).  So I let her try it.  At first she didn’t like them on, that lasted for about 5 minutes. Then she put them on again and said “Oh Mommy, that’s much better”.  I was amazed.  She wore those glasses the rest of the day and seemed to get along just fine. At night when it was time to go to bed she wanted to sleep in her glasses.  (too cute).  The next day I let her wear them again. I noticed the next day she was noticing things around her and asking me what is that?  She was seeing things that were far away. The next day I called our eye doctor and told her my findings and asked if I could bring her in for an exam.  While sitting in the doctor’s waiting room Tatyana was sitting next to me and there was a big flat screen TV on the wall. No sound but it was on.  I asked Tatyana what is that on the wall, she said “that is a TV”.  I was shocked.  The amazing thing about this is she doesn’t usually tell me “what” she is looking at, she would have to touch it to tell me “what” it is.  The doctor called us in and examined Tatyana.  The doctor hadn’t seen Tatyana since we have been back from China.  The doctor was amazed at how her eyes don’t roll around as much.  She was able to check her eyes and found she does need glasses but not a +5 but a +2.5.  She suggested we reduce the strength as to not interfere with the growth of her vision over the next year.  She advised us to get check ups every 2 months.  I am so excited because now that we have new glasses for that extra boost of power she will be able to identify objects.  Her news glasses will be ready in about a week but for now she is wearing her old glasses +5.  This morning she sat down at the table and said “Mommy there are my letters”, she was talking about a piece of paper that had some braille letters she typed the other day.  OH MY.. she is starting to identifty objects thru vision.

What a blessings. Thank you GOD.

I hope you don’t mind me sharing this wonderful news. I will keep you posted after her new glasses arrive.

Thank you to everyone for all your prayers and words of encouragement.  Email me anytime if you have questions.

Have a wonderful day
Andrea
hope4vision@hotmail.com

Hey Everyone,

Wow.. its seems like its been forever since I updated my blog. 

Tatyana is still doing great.  She did get a stomach virus about 2 weeks ago and developed a little fever which we were able to break quickly. I could tell that while Tatyana was sick she wasn’t seeing as well.  I see why the doctors in China always checked to make sure she doesn’t get fever.  Stem cells don’t like fevers.  The good news is that she is much better and not sick anymore and her vision is coming back to where it was before she got sick.

Tatyana is becoming more and more independent.  She has been trying things on her own without mommy asking her to. For example, she now goes to find her hamper to put her clothes in when its time for bed.  She wants to find colors now.  She says lets find something Red, or Green. Its cool when she says that.  She walks into a room and turns on the light without prompting. She can notice from across the room if someone is moving around, she will say “where are you going”?  The first time she did that to me I was in shock.  (smile).

I want to thank everyone for your prayers, support and emails of encouragement.  Please see our ”Thank You” video on the www.stemcellschina.com for May 2009.

If you have any questions feel free to email me anytime.

I will continue to keep you posted on Tatyana’s progress.

Love ya all.

Andrea
Hope4vision@hotmail.com

Hi Everyone,

Sorry its been so long to post updates but I have seeing so many amazing things happen with Tatyana I was in shock.  I wanted to make sure I wasn’t just seeing things, but now I have witnesses. (smile).

The other night, we had a bad storm. Tatyana screamed in the middle of the night I immediately woke up and saw lightening flash.  Tatyana saw lightening for the first time and was scared.  I explained to her what that was and then she was OK.

Easter morning, Tatyana, my Mom and myself were walking to church from the parking lot.  We were all holding hands.  Tatyana said, very confidently, “Mommy I see my shadow” I said, Yes. And there is also Mommy’s and Nana’s shadow too.  I praised GOD again as we walked into church. 

Last week I received an note from Tatyana’s vision teacher saying that she walked from the cafeteria to the classroom all by herself. Her teacher was behind her but Tatyana didn’t know that.  The cafeteria is a long ways away from her classroom and I have to admit I get lost sometimes myself.  Her teacher said this was a HUGE accomplishment.

This week, I decided to try teaching her colors.  In the past she hadn’t done so great so I left it alone for a while.  This week I tried it again.  I placed small puzzle pieces in front of her. Each piece had a color (Red,Black, Green, Blue, Brown and White).  I would ask her to pick up the….. (I would say a color randomly). To my amazement she got them 50% right.  I tried it again and again and she was still getting them mostly right. I was so shocked.  My husband came home from work and I told him. He was in disbelief also but we did it in front of him.  She was getting tired of doing the game so she didn’t do them correct anymore.  The next day we tried again and the next day again. Yesterday, me and my husband watched her as she got 100% correct.  Tatyana is really smart so I wanted to make sure she wasn’t memorizing the shapes and colors to get the correct answer.  So I switched to plastic Easter eggs.  Those colors were a little harder because they were pastel colors but I have to admit she got blue, green and yellow correct.  I emailed her vision teachers to tell them my observations and to see if they noticed the same thing at school.

Oh yeah, I almost forgot to mention.  Since she received her stem cell treatments she hasn’t gotten a cold.  Before she would get colds constantly. Now, no colds.  I think her immune system has built up. Again, just my observation but my husband also agrees.

Oh…. I just got an email from her vision teacher.  She is also seeing vision improvements. 

Andrea:
This is wonderful news about Tatyana seeing colors. She is working on identifying 20 objects 4 choices and is at about 70%. She has 4 different objects: banana strawberry apple and grapes. She gets all the banana and strawberry correct and 1/2 the grapes and so far none of the apples. I then ask her to tell me the color that most apples, grapes, strawberries, and banana’s are and she does this about 75% correct.

Yipeee…. YOU GO STEM CELLS!