I know I have not been able to update my blog in awhile, since I’ve been busy and just seemed like I’ve been trying to catch up on things in life lately. Well, last month I went to the eye doctor for my yearly check-up. This was about a month after we got back from China,s o of course my family and I were excited to hear what the doctors had to say about my improvements. I was so looking forward to this appointment, but little did I know this was going to be moreof a disappoinment than anything.
My brother, Matthew and I both had an appointment on the same day, since it was just easir for my parents. This appointment was early in the morning, and we decided to go as a family, which is something we usually don’t do. We were excited to hear what the doctors have to say, because it was one thing for me to say what I noticed, but another to hear it from a doctor.
So, we get to the doctor’s office, and tis supposely one of the best eye centers in the town I live in, so boviously i’m hoping that it will be a good experience. First, we fill out all the normal paper work, and wait for the nurse to do my first test before we actually see the doctor. Usually I do a visual field test first, that’s how its been since I’ve been going to this doctor for about 5 years now. When my name was called, I figured that was the test we were going to do. While in China I had more improvements on my visual field, so I wanted to see what it would be like here now that I’m back in the US. Little did I know, I wasn’t even going to take that test today. I was confused, and I asked why I wasn’t able to take the visual field test, and apparently it isn’t sually part of a usal check-up. I have to request to take that test, but how am I suapposed to request something that I don’t know about.
We thought about it, and figured we could just take the test next time. So, I did the regualr eye check usig the eye chart and everything. On my right eye, I was able to see the first row, which was a normal thing for me. And on my left eye I was also able to see the first row, which my family and I all knew that is something that I wasn’t able to se before, since my left eye is just a little worse than my right eye. Before I was alb eto see movement or fingers a few feet in front of me. Obviously, this was a big deal for me,a nd was eager to hear what the doctor had to say about this…
So, now we’re patiently waiting to see the doctor. We knew the doctors here would be different than in China. Doctors in China were very patient and willing to spend as much time with you as they needed to answer any questions you may have.
Finally, the doctor walks in and asks if I’ve seen any improvements, and I say no, because we didn’t tell hima bout our experience in China because he just wouldn’t unerstand.
So, I’m waiting to hear what this dotor has to say about my improvements, and he says nothing. I’m disappointed now, and a bit dicouraged. So, we ask again if he’s sure there are no improvements and all he says is “Yes, everthing seems to be normal adn stable…” So, we just don’t know exactly. All I know is the improvements I’ve noticeda nd other peopel have noticed by observing me through times. Even though it was disappointing, it was a learning experience. We decided not to go back to that doctor since it wasn’t helpful, and felt we didn’t get the service and care we shoudl of recieved from a doctor.
September 6th, 2009
I’ve been home for nearly two weeks now, and have seen most of family and friends all who I’ve missed while I’ve been gone for a month in Qingdao, China. It was a great worthwhile experience, and would do again in a heartbeat if I had to. I just pray that this all works out for the best and there will be no need fora next time.
i was curious and anxious to see if my family and friends noticed any difference in me while I did things on a daily basis. Sometimes I just get used to what I do and I may not notice that I’m doing something differently or out of the ordinary or something. I think its good to get another person’s perspective.
Well, one of the first things I noticed was a few days after I got home and I was watching TV. i was home with my younger brother, Matthew and he says, “There’s something different about you…” I didn’t think about it much since it’s just proably different for him, since he hasn’t seen me in a month. I just figured he wasn’t used to it or something and kept watching TV. Then he turned to me again and said, “I don’t think you blink as much as you used to.” I was like ok, whatever you say.
Honestly, I never noticed I blinked more than most people, but apparently I did. my friends and family informed me about it a few years after I was diagnosed with LHON. It didn’t hurt me nor did it bother me any. I couldn’t help it if I had to blink. It was just a natrual thing. I remember one time, one of my aunts told me to try not blinking so much. I didn’t understand why that would make a difference and how it was possible. It wasn’t possible, I can’t just stop myself from blinking. Everytime I blinked is like a chance for my eyes to rest. I just figured my eyes just got tired more than most others, and that would make sense, because I had to put more stregnth in my eyes in order to see.
I actually don’t notice my eyes blink less than before, but then again i didn’t notice it was quicker before I left. I did know my eyes got tired a lot though. I will take my family’s word for it, and say that my eyes blink at a more normal rate now than before I left. i think this is a good sign, because it shows that the stem cells are working and helping my eyes not to be as tired, because I don’t have to try so hard to focus or read something anymore. I am greatful for every little suttle improvement, because all the little things will eventually lead to something big in the long run.
Even though I didn’t notice that improvement, I did notice that my eyes don’t get as tired as quickly anymore. Before I would go on the computer to check my email, IM, etc. and could only do that for about an hour or so, and my eyes would be tired from all the reading. Sometimes i would just stop reading it all together, and just let my computer talk. Now, I can be on my computer for 2-3 hours at a time, and won’t even have to rely on the speech as much. I could keep reading the screen, and it won’t bother me a bit. It’s great, because I still have my computer set at the 1.8x font and is reading it with no problem. I will have to eventually set it to a lower magnification when i feel ready, but at this point I’m perfectly content to leaving at where it’s at. I don’t mind being on the computer that much either. I get to connect with people around the world and keep in contact with all my friends. It’s a lot of fun and helps the time go by when I have nothing to do. I also look at it as if I’m giving my vision practice by reading everything again. I’m just not used to reading with my eyes so much, since I’ve relied on Braille and accessable technology for nearly 6 years. It’s a hard adjustment, but its for the best. This adjustment is way easier than it was 5 1/2 years ago when I was diagnosed with LHON.
I am greatful for every little improvement, because later on those little improvements will add up to something larger in the long run, which I’m hoping for. Before coming to China, I didn’t even know if this was going to work, and knew there were no guarentees. As a family, we decided it was worth giving a try though. Stem cells are not miracles for LHON, but I may be able to see a miracle though. I find it a miracle in itself already that I’m seeing these improvements. It’s amazing what stem cells can do for people, but it doesn’t mean it will work for everyone. I do believe that it’s worth giving a try though, any improvement is better than what you came with, so you’ll never know what will happen for you or your loved one unless you give it a try.
I know I would not have seen so many improvements if it wasn’t for the support of my family, friends, and complete strangers. I thank everyone for emailing/commenting your thoughts and words of encouragement, praying for me, and supporting me every step of the way. This trip wouldn’t have been possible without you! People may think I must have been strong and brave to travel all the way to China for stem cell treatment, not knowing what the outcomes may be, but I know it was God that have guided me every stepped of the way. And I am blessed that He used so many people to show me his guidence, support, and love.
Also, I know there are many families with loved ones effected with LHON, or who are effected with LHOn themselves. i know it must be hard to decide whether or not to make this incredible journey. It’s a personal decision, but I would encourage anyone and everyone to give it a try. It was a life learning experience that I will never forget.
For those reading my blog on a regular basis, I will try to update as much as I can. If I notice any improvements or anything, I will be sure to post on here. I know everyone is as eager and anxious as I am to see what my full results will be.
Keep reading, because I’ll keep updating! 
Love, Michell
Email: michellgip@hotmail.com
July 24th, 2009
I’ve been home for about a week and half now and it’s been great! I was busy last week hanging out with family and friends. It was so nice to see everyone again! I do miss all the people I met in Qingdao, but I’m glad to be back home.
All of my families and friends were so excited to hear about my journey and experience in China. Also, they were even more eager to hear about my improvements and the miracles we’ve witnessed during our trip. It’s been a great experience and lots of fun. ..
Anywyas…improvements are yet to come, and can’t wait for them to happen. I will be sure to post every little improvement on here. I know everyone here who reads my blog is probaly as excited as I am.
I will probaly post again before I leave for Sacramento on Sunday, July 26. I’ll be gone for about 5 days. I’ll be attending a Youth Leadership Forum in Sacramento and thinks it will be a lot of fun. I’m excited!
Untill then…I’ll be sure to update soon!
Michell
July 24th, 2009
Oh my gosh, I had such a long day coming home. I was excited to go home though and see my family, but i knew there was going to be a long day ahead of me. I had to go from Qingdao to Hangzhou to Hong Kong to LA and finally to Fresno. I don’t know if it could take any longer than that. I think including lay overs and everything it was about a 30 hour flight.
Jack and the drive, Cliff drove us to the airport at 6 am sunday morning. We were set to go and Jack helped us get our boarding passes and everything, but that’s about it. We had no bags to check in or anything like that. So, we said goodbye to Jack at security and it was hard, but it was what we had to do. I’ll be sure to keep in touch with all the staff at the hospital though. After all, they have done so much for us in the past month, the least I can do is keep in contact and let them know how I am doing from time to time.
Now, our long journey back home begins. Our flight from Qingdao to Hangzhou went smoothly. I managed to sleep most of the way there, even though I wasn’t actually tired though. When we were in the Hangzhou airport, we kinda confused about where we were supposed to get out boarding pass and we were late as is already. So, we were rushing trying to figure everything out. It was even harder since no one there spoke English. It got to be a bit frustrating. Somehow we managed though and made it to our terminal with a half hour left to spare. We almost didn’t make it, but luckily we did.
All the rest of our flights “flew” by in my opinion. I was able to sleep on every plane for a good legnth of time, and was good to go. So, by the time we got back to Fresno I was not tired at all. I was excited to tell my Dad and younger brother all that ahppened and what was going on and stuff like that. I was just talking up a storm. It was hard for my mom to sleep on the plane though, so she was just a bit tired, but was excited to be back. At the airport, my mom found a nice surprise from a few members from her bible study. They decided to meet her at the airport and welcome us back with Welcome Back balloons and a wonderful card. It was so thoughtful of them and extremely nice to take time off their sunday to meet us there. My mom and I appreciated it very much.
I was talking up a storm the entire way home and couldn’t stop. Finally, my parents were tired and everyone fell asleep and I was by myself. i decided to go on the computer to let everyone know I was back safely and check my facebook, since I couldn’t do that the last few days I was in China which was bummer. I also had to check my email and stuff. So, the computer kept me busy for a few hours. I finally decided I should get some sleep and only slept for a few hours since I wasn’t actually that tired to begin with. I was ready to start my day at hom; to unpack, clean my room, and just get back into the swing of things again.
July 15th, 2009
I know I’m always late with my posts, but I know what I want to write, but seems like I can hardly find the time to write it. I will have everything on here eventually. The way I look at it is that as long as all the info gets on here, we’re good to go.
Anyways, since it was our last Saturday in Qingdao we decided we wanted to go somewhere. Mom and I decided to go to the Seashore Beach Sidelwalk which we thought would be very nice and relaxing. We asked another family to come with us, which was nice of them to come along. On our way over there, it started to rain. We hoped the rain would stop before we got there. Just our luck, it started to rain all the harder. We were debating whether or not we should make a change of plans and go somewhere else that was inside. We ended up going and bought umbrellas while we there. It wasn’t cold while were there anyways, it was just raining. The rain felt good actaully, since it is usally all hot and humid. So, it was a nice change. The Seashore Beach Sidewalk was very pretty actually and very nice. You walk along the side and can see the scene around you. It’s pretty neat. I think it’s just a nice relaxing place to go to. After that, we just went to a restraunt for lunch and called a day. Back to the hospital we went.
I’ve always been a last minute person and wasn’t sure when I should start packing. I knew I left the next morning at 6am, and knew I should start packing right when got back, but didn’t want to. If it was up to me, I would of packed early the next morning, but knew this time that wouldn’t have been the greatest idea. So, as soon as my mom and I got back to the hospital we started packing. There wasn’t much to pack since we brought a carry on for each of us and my laptop bag. So, it only took about 20 minutes at the most, but it felt good to get it out of the way and knew we ready to go for the next morning.
Most of the people we origingally met when we first arrived have left already, and it was hard to see them all leave. But we did meet wonderful peoople who were still there at the hospital and still there now, and they have touched my life by their inspirational stories. I will try to keep in contact with everyone and will miss everyone. I knew we wouldn’t have made it through that month without everyone there surpporting me and always there when I needed someone to talk.
Since our flight was early in the morning, we had to say our goodbyes that night, it was hard to say goodbye since we have made life long friends. it was a wonderful last night though.
July 15th, 2009
After my spinal last week, I was told I had to go to downtown Qingdao again to an Eye Institute.This is supposed to be the best Eye Institute in all of Qingdao. I went there once before already, before any of the treatments started. Now, i was told to go back so that they would have tests to be compared to. I didn’t mind going again, because I myself was curious to what improvements I have made. so, that Thursday afternoon we made our way downtown.
When we go there, I was surprised it was not as buys as the other days we have went before. That was a good thing, since I didn’t want to stay there any longer than I had to. I had to do all the same tests as I did last time. They take a test on your visual field, optic nerve, and some other tests. They were all very simple.
We were there for a couple hours at the most, which wasn’t too bad considering we had to make it a two day trip the first time we went because it was so packed and we didn’t have enough time. Luckily, it seemed like it went a lot quicker this time.
While I was there, they had my records from before and the doctors said I had a better test this time than the las time, but I wasn’t sure how much better, and they didn’t know how to tell me either, because they don’t speak very much English. In any case, I was just glad that I was showing improvements though. I just had to wait for the doctors back at the hospital to evaluate my results and tell me what they thought and what my results were. I was hoping to know that day actually, but the doctors didn’t have any time; so I had to wait until the following morning to find out, which wasn’t that big of a deal. Even though being patient is the hardest thing, I know it is all worth it.
Anyways, Dr.Tony came in the next morning with a few other doctors. They have all looked over my results from the eye doctors. I was curious to know how I did. So, he told me that I had improvements and was very happy for me. He had another doctor translate, but it was hard for me to understand, but I tried and got what was going on for the most part. I think Dr.Tony I was a bit confused, but I’m easily confused anyways. So, he found a translator in the afternoon and told me again what my results were.
He said that the first time I took the visual field test my central field was what was most effected from LHON. Those of you who have LHON or know of someone with LHOn knows that its mainly the central field that are effected. So, he said this time it was getting better and it should only get better. So, I was happy to know that my central filed was getting better in both eyes, but in my right eye was the one that showed the most improvement. Also, while taking the optic nerve test, my optic nerve did not react ot the light at all. Second time around, my optic nerves would react to the light. It’s a slow reaction, but it still reacted. It’s slow at first, because it takes time for the optic nerve to get a chance to regenerate. I know it will just get better from this point on.
Dr.Tony also said something that my mom and I found quite funny. He said according to Chinese law I am legally able to drive in China. LoL If anyone has ever been in China, you know what a scary thing that would be. We’re just not used to the driving there. It’s like your unsure if they even have traffic laws or anything, but its just different than what we’re normally used to that’s all. I thought it was nice to know that I would be able to drive in China, but of course I would never do that. i’d be afraid to. LoL I’t's a thought to keep in mind though of course.
July 15th, 2009
I was so excited that this was my last spinal. I hoped that everything would go well, and it did as everything planned out which is awesome.
Dr.Tony gave me another eye test before my spinal that day and he said he still saw a little improvements. That was so encouraging and good to hear. He also suggested that I try to stop using all the accessable technology I use on a daily basis because I should try to live a normal life without all that stuff. For instance, I use a CCTV to read and write. he said I should not rely on that as much anymor eand do it by myself. It will help the stem cells learn what they are supposed to do, because sometiems it doens’t understand what to do or what it needs to do. So, it makes sense, and I kow I can’t just stop right away, but I’ve been slowly trying to do things one step at a time. I use my computer font at a smaller font and I’m still able to read it. So, I know its working, I just have to be patient.
Dr.Tony also thought it would help to write in a journal each day. Even though my handwriting might not be great at first, I should keep doing it anyways. it will help my writing, and my vision at the same time. It will help me to kinda remember how to do things like I did before. I’ve been doing that for a few days now since I’ve been here. He said I should try to keep that habit for the next 6 months whiel the stem cells are still growing. Of course, I’m goign to try that, and I’ll be sure to let everyone knwo how it turned out for me.
Anywyays, I said my spinal went smoothly, which I was very happy about. I asked Dr.Tony if he was doing my spinal, because he was there for my last 2. He wasn’t sure, so I was kinda worried about who it might be. And like always I’m always the first one to do my spinal, so at 2pm they wheeled me in and I still didn’t know who was doing my spinal. I said a short prayer that God would give the doctor stregnth to do my spinal on the first try and for em to not have that much pain afterwards. Alos, I prayed that these stem cells just work like there was no tomorrow and restore my vision.
I got in the operating room and nurses were there getting ready and all that good stuff. Next thing I knew I got my valium and I was drugged up and pretty much knocked out. From that point on, I didn’t care what was going on. I knew fo r sure it was Dr.Lisa that did my spinal though. I was kinda nervous about that at first, because I’ve never had another doctor do my spinal for me before. Thankfully, she did just fine, one poke I was done and good to go.
I hope to see good results from this last spinal, but I know I will have to wait. Waiting is the ahrdest thing to do, but I look at it as a test from God. It’s like God is testing my patience sometiems, but I can handle it.
And they want to take me to the Eye Institute in downtown Qingdao for another eye examination before I leave. I hope to see positive results from that.
Hope everyone is doing well back home. I come home on Sunday! I’m so excited to see everyone again!
<3 Michell
July 11th, 2009
I originally had my spinal scheduled on Friday, and that would be two days before I leave. Considering the fact that my last two spinals were kinda rough, my mom and I though it would be a good idea if we pushed everythign up a day or two. So, we talked it over with Dr.Tony and moved my spinal to Wed. That was a good thing, because it gave me time to rest in case of any side effect or reaction. Everyone thought it was a good idea, and now I just hope my spinal goes well.
July 11th, 2009
I don’t blog much about the IVs much, because I used to get IVs all the tiem back home, and its like no big deal now. All they have to do is stick you with a needle and put the stem cells through. It’s simple enough, unless they mess up, but luckily for me they’ve been really good about getting it at the first try and not making too painful. The worse part has to be sitting and waiting for everything. It takes about an hour, which isn’t too bad I guess, but it could get kinda boring just sitting and waiting. It does help that your in a room wiht other people though, so you can just tlak to people the entire time. That helps a lot actually. I was just glad my last IV was done and over with though. I just have one more spinal and I’m set to go!
July 11th, 2009
I know I’m kinda late on updating, but last saturday we got a chance to go to the temples downtown with another family and one of the translators. It was very nice and intresting, since I’ve never been to a temple before. I wasn’t sure how big, nice, or what to expect there. It was very fascinating to see all of the people adn scenary around it. Obviously, my mom and I had to take a lot of pictures while we were there. We have to show people back at home. I’m starting to become photogenic whether I like it or not. I have taken more pictures here than I’ve ever taken in a really long time. So, its different, but I’m actually getting used to having my picture taken. It doesn’t bother me as much as it used to anymore. Anyways, the temples were really nice. It was a really big place. There is a building for something different such as hope, peace, etc. It was a good experience, and I would encourage other people to go there as well if they got the chance.
July 11th, 2009
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