Posts filed under 'bilateral optic atrophy'
Hello there,
well, today started with my usual therapies with andy,he was all excited to see us back! We then popped over to the lotte mart to get some supplies for the day. We were really tired today, think settling in this time is a bit harder than the last. Our sleeping is all over the place!! We made dinner this evening with our own gravy 
The stem cell nurse came around to tell us that my stem cell would be delayed because the flight was delayed due to fog!! So we had to wait another 2 hours til 9.30! Finally it arrived and Melody brought us to the iv room. It was just us, as im the only one getting stem cells at night because Im O negative!! We had great fun with Melody, laughing, learning chinese and she was trying to get Matthew to sing!! The stem cells went in really well, all took about 45 mins and we were back in our room! We watched some shows on the laptop and went to slumberland! Im up now again since 5 am…..im hoping by the weekend I’ll be back on track! Well thats it for now, til tomorrow…..
Night night
November 18th, 2010
Hello!!
We arrived safe and sound on Monday at around 4pm after a long trip here. All our flights were delayed so we were very tired when we got here. Really nice flights over, thank god! Ethiad airways were great!! Jack picked us up at the airport with a big welcome! We were also greeted by Matthew and Keith from Beike so we headed straight back to the hospital. We have a diffeerent room this time, room 6! Everyone from thr nurses to the cleaners recognised us! It really feels like we never left….strange feeling! Alice is gone so its a bit different here!
I then met my doctor, she is lovely! So happy with my improvements. She wants me to consider getting 1 retro bulbar injection, into the eye! Im a bit unsure yet.
Anyway, we fell asleep at around 6.30 that evening until around 2 am Had by blood work done at 6 am and busy morning again. Doctor came around to discuss a treatment plan and go through tests etc. Joyce brought us to the hospital downtown for tests even the doc down there recognised us! We sure do sstand out i guess:) All mu tests show improvement from when i was here last march.So hopefully this round will work just as well.
When we got back to the hospital,the translators had arranged a party with loads of food! We got to meet all the other familes, there is 14 here now…big difference to when we first were here!! Its great to have Loretta and Larry from Meath right down the hall. They gave us bread and eggs for our brekkie cos we didnt get a chance to nip over to the shop yet!!!
Well, thats about it for now. Were trying to stay awake a bit longer tonight so we’ll see how that goes!!
Chat again tomorrow
Valerie and Matthew
November 17th, 2010
Hello,
just wanted to let you all know that were are starting our trip to Qingdao tomorrow.:) I’m excited, nervous, sad, EVERYTHING!!! This time around I’ll have some buddies from home over there, I will know the staff and where were going so that is a big comfort. I am hating the thoughts of getting on a plane!!! Im petrified!! But I am determined to get over my fear of flying once and for all.
Anyway, we will arrive in Qingdao on Monday 15th. I’ll have 2 extra gaurdian angels looking over me this time instead of just 1 since the last time!! I know all 3 of my gaurdian angels will be with me all the way watching over us!!
Until China……..
Lots of love
Valerie and Matthew
November 13th, 2010
Hi there,
So it has been 6 months since we have been home. Time is flying!! Well, as you know I am going back to china, this time I am looking forward to it as I am not as nervous and anxious! I am going there with the same attitude as first time around. If it helps, i helps, if it doesn’t, it doesn’t. I am already delighted with the improvement that I have.My doctor is delighted with my progress and they are hoping this time around will do the trick. I had another visual fields test 2 weeks ago and much to my surprise there was improvement.
Now, I am 7 weeks away from going to china and I am sorting out visas, etc. All fun!! I am delighted this time because we will know someone who will be over there from Ireland, at the same time as us
Anyway, I will write again before we leave for Qingdao. Thank you to everyone who has been keeping me in their prayers.
Bye for now,
Valerie xxx
September 15th, 2010
Hello!!
Well, over the last couple of weeks, it has been decided that I return for more stem cell treatments. I have had so much improvement in my vision that it has been recommended that I go for more. I’m delighted, because not only has it worked so well for me first time around I am hoping maybe this round will help me even more!!
Matthew and I will be flying out in November for 3 weeks. This time I will be getting 6 injections. I will try to upload my test results next week so you can all see my improvements!!
Talk soon
Valerie
July 24th, 2010
Hello guys,
Well, has it really been 3 months and 1 week since we came home, WOW WOW WOW and WOW! Well, I am doing pretty well. I had my tests the other day in Dublin and I have my visual fields and visual acuity check this wednesday so I will update when I get results.
Since my last post my left and right eye are now at around 5 meters!! Big difference from 1 meter??!! I notice a lot more little things like I could see the goal posts at a match last week and every day things. My improvements have slowed down a lot, maybe its because when i first cam home i was seeing everything for the first time! But I am still thrilled as I have gained 4 meters of sight this year, something I thought would never happen.
Other then that I am keeping really well, still smiling and enjoying watching the world cup!! Its strange watching soccer properly!! the players all have legs and all
Anyway, I will be sure to let ye know how my results go and please keep me in yere thoughts and prayers! There working!!
Lots of love and enjoy the world cup 2010!!
Lots of irish hugs and kisses
Valerie
June 14th, 2010
Hi there,
I cant believe we are home 4 weeks already. The time flew. It feels almost like a dream that we were even there!! Everything is going really well. I have noticed a few improvements since my last post. Little things really, like shopping, I can make out clothes sizes, on certain items, my finger counting has improved amazingly!! I watched a hurling match on my tv and I could actually make out the 2 different teams!! I even knew no 15 jersey!! Its almost as if my little jigsaw pieces are fewer.
I know I have a long way to go but hopefully I will get there. I am continuing my accupuncture, herbs etc and I really hope they help. Someday I WILL drive…..
Thanks for helping me through the past few months.
Lots of love
Valerie
April 4th, 2010
Hello there from Ireland!
Well, we made it home after 2 days of travelling. Our 2nd flight, Hong Kong to London was horrible. Really bad turbulence and I was sick for 12 out of the 13 hour flight!! But we eventually got home and we are so happy to be back. Everything went really well with my tests the other day. It showed my vision has improved great in the visual fields test, vep test and oct exam. All of them were much better than at the start. My retina has thickened ,and overall the stem cells are helping me out!! It could take a few months for me to see any more improvements so please god let them continue. I will keep ye updated. Thanks for all yere help over the last few months. So happy to be home!! Woohoooooo!
Love and hugs
Vallie and Matthew
March 7th, 2010
Hello there
Well this will be my last post from China.And what an amazing journey it has been for us both.It was worth every tear, penny and sleepless nights. I am so unbelievably grateful to all the staff here on the 8th floor. Dr Tony, my fav doc in the whole world!! Jerry and Andy who gave me hours of relaxation. The fabulous nurses who took such good care of me over the last 6 weeks. Not forgetting my new buddies Jack, Lucy, Alice, Amanda and Wendy. For making this a home away from home and giving us hours of laughter.
I have seen some amazing success stories since I have been here and I am glad we made the decision to come here.I had my tests done today downtown and it went remarkably well. Dr Tony will be around in the morning with the results but we know they are much better than the first ones.Will let ye know!!
Anyway, I just wanted to say a big thank you to everyone for keeping us company on this very difficult but amazing journey. We will miss all our new friends and all the fantastic parents and patients that we have met. But I am so happy to be going home to my beautiful sweet Abbeyknockmoy / Lenamore!!
I will be in touch as soon as I can about the eye results. Til irish time, zai jian!!!
Love and kisses
Vallie and Matt
March 3rd, 2010
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