Posts filed under 'lebers congenital amaurosis'
Connors had 2 Stem Cell Injections. The first was an IV and the second was a direct injection to the right eye. He was heavily sedated with Valium and came out talking up a storm. He has been having accupuncture and electric wave therapy as well as the fire cupping. As you can see by the look on Connor’s face he is not a happy camper. He has this 5 times a week for 3 weeks. His next treatment will be a lumbar. He is resting comfortably at the moment. Talk again soon 
April 6th, 2012
Hi Everyone, it’s been a very slow day. Connor won’t have any treatment until Wednesday because there is a public holiday that goes until Wednesday. It’s very sad that there aren’t many of the staff remaining because the government is regulating all the stem cell clinics so this clinic can’t take anyone at the moment. We have only spoken to one family who have returned for a second year. There are a couple of other families who we are yet to meet. I’m glad I packed Connor’s braille note and the ipods because we are bored already. I’ll talk again soon
April 2nd, 2012
Hi Everyone,
It’s our last night in Qingdao and we’ve been out celebrating with two other families who are leaving tomorrow as well. We went down to the Holiday Inn which was a nice change but it was a big affair because the family from the UK invited all the staff who looked after their daughter. Connor had a great time amongst all the people and after some encouragement he agreed to sing. His first song was Unchained Melody which just bought the hotel staff and visitors to a standstill and then his next song was a Choir song from school which went down just as well. We’ve made some great friends on this trip as we’ve done on our past trip which we won’t forget.
Connor’s doctor came to see us today with the results of his eye tests which didn’t show much improvement in two weeks but I said I want them to compare to same time last year. One part of the test registered 2.7 which was severe last year but this year it’s 6.1 which is moderate so it has been worth the trip yet again.
Thankyou to everyone who has written to us to keep our spirits up.
See you when we get back on Monday Tracey and Connor
April 22nd, 2011
Hi Everyone,
Connor had his last treatment today which was another direct injection to the eye. Once again he didn’t go to sleep so the nurses and doctors kept him occupied by teaching him some Chinese. One of the other families found this toy that when you put the cards in and press on them it will speak Chinese and then English. So off to Walmart I go to get Connor one, which he has enjoyed playing all day. We had an Aussie family leave today, a Malaysian family leave Friday and there a few other families including us leaving on Saturday (WOO HOO) It seems like we have been here just as long as before because the treatments have been so close together but then other times it drags out because there is not much to do. I’m going down to the open markets once more to find Callan some Nike knockoffs or a jacket. I found a pair of Puma’s for myself for the grand price of $13.00 so I’m set Well that’s it for now. Talk soon.
April 20th, 2011
Well today has been a long day, Connor was supposed to have a Lumbar injection with a Local block but he’d decided early this morning that it might hurt too much so he had a General aneastetic which is a longer procedure. He had to fast from 7am breakfast so that’s what I did as well right through lunch and now he can sit up at 10pm but he can eat at 8pm and so can I. Connor can’t move his head for 4 hours after the procedure so it’s hard for me as well to keep all the times in my head with no food but that’s what you do for your kids…He is now taking the opportunity to listen to the Beatles Collection which his singing teacher has given him and I’m even enjoying shhhh. 14 CD’s in total but they aren’t very long. Ok I’m going now cause it’s getting close to him being able to drink some water and me as well. Talk soon
April 18th, 2011
Connor and I did not much again today being the weekend. He did have something interesting to tell me though and that was when he came out of the bathroom. He said “I can see light in two places” so I went into the bathroom with him so he could show me. The bathroom was in darkness so I asked him to point to the light. He was standing facing the sink with the mirror in front. The light he was seeing was beside him which was the first place and the second was the reflection in the mirror in front. So he was getting feedback from the front of his eyes and the side. Happy Days
April 16th, 2011
Connor had his direct injection yesterday. It didn’t really start out well. Connor had to fast from 7am and the injection was scheduled for 2.30 which was ok but then it got delayed an hour. Then we went to the OR and they came out with the small syringe to sedate him. I’m looking at it thinking that wanna be strong because that’s not going to put him to sleep. I was right so they went back in and got another syringe and in it went. Just when we thought he was going to sleep he started talking again and they noticed his iv site had the sedative dripping so then they had to put in a new iv. Next thing they come back with another syringe which was twice the size of the other two put together. They finally wheeled him away singing Cher’s Turn Back Time which had us all laughing because his voice was all distorted from the sedative and do you know he came out still singing Turn Back Time. He was raving for about an hour after that. He’s had an immediate change where he can recognize if my hand is moving in front of his eyes which made me cry and I went out and told the nurses and they came to see for themselves which was great rather listening to a hysterical mum. Sorry I forgot to point out it was a direct injection just below his eye but it’s seems to be working on both.
We went down to the open markets today which was hard on Connor’s nose and mine too for that matter. I’ll have to go back without Connor next time because it was too hard to get him into some really tight spots.
Well that’s all for now
April 14th, 2011
It’s been a very slow weekend for us because all the shops bar a few have closed down. That’s a real shame because we were really looking forward to getting out and having a look at all the new shops……ooops but good news the Steak House we used to go to is still open. We are going to try that with some new families maybe tomorrow. Connor had his 2nd lot of Stem Cells today but he’s not noticing any real change but he is accurately telling where the light is coming from and which direction when the Doctor shines the light in his eyes. He really doesn’t like the new acupuncture treatment which involves needles all around his eyes and then attached to little electrodes which give off a mild pulsing sensation. I ask him to be brave while secretly thinking there is no way I could do that, but we still look toward the bigger picture which hopefully he will one day see. Talk tomorrow
April 11th, 2011
Hi Everyone, not sure what happened to my first post so I’ll write another one. We had a better trip this time, a lot of help at the airport. The only downside to that was my dutyfree was confiscated never to be seen again 
Connor has had his first iv and therapy session which included accupuncture with electrodes, electric wave therapy and this time fire cups which he thought was funny. Not much to do cause the big shopping centre has closed across the road. We will try to go and have a look at some shops tomorrow just to get out for a while since Sunday is a day Connor doesn’t have treatment. Not much else happening but we have met some very nice families and Connor has been entertaining them with his singing. Talk soon xx
April 9th, 2011
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