Hello Everyone,
I would like to thank you for taking interest in Justin’s blog. Sadly, our angel passed away on November 2nd, 2008 from respiratory failure. Although he had quite good improvements, his lungs just weren’t strong enough to get through a cold he caught which lead to respiratory failure.
I still believe that the stems cells help, but it is a treatment that should be done routinely and because it is so costly, we were not able to return for further treatments in time.
Please know that my husband and I will be working very hard with fund raising activities and donating all proceeds to find a cure for SMA. Should you wish to get involved, please email me at tatianalicsko@hotmail.com for more information.
I wish you all the best of luck and good health.
Tatiana
December 2nd, 2008
We have been home for almost two months now and Justin has been improving slowly but surely. He has gained a little strength overall. Lately he’s been able to push down on the buttons of his toys which he could not do before and he sits straighter in his high chair. What has grown the most so far is his appetite…boy can he eat….lol !
We are pleased with his improvements but are hoping to see more.
July 31st, 2008
Well our time in China has come to an end. We will shortly be leaving for the airport and we are very excited to go home but dreading the long flight.
We will continue to update the blog from home with Justin’s progress and hopefull we will see some more improvements.
We thank everyone at the Xiaoshan Hospital for the wonderful care Justin has received and we thank everyone who has read our blog and sent us good wishes. It was very nice to see you all with us even though you are on the other side of the world.
See you all soon !
June 12th, 2008
Well it’s the final countdown ! We’re almost home, just a few more days to go.
The doctors saw Justin this morning and they said that they noticed some improvement. For example, when he’s curious about something he’ll turn his head to see it, not just with his eyes, which is something he didn’t do before and he has a little more movement in his arms. They are not huge improvements but they say that it takes time.
We had a banner made for the hospital and will be giving it to the staff tomorrow. It’s kind of like a tradition, most people here have one made thanking the staff and it’s cool because most of them have the patient’s home country. You can see that there are patients from all over the world.
June 9th, 2008
Well Justin’s last treatment was a success, he was good as usual and he had quite a bit of energy afterwards. Now all that’s left is physio therapy for the next couple of days and then we are on our way home…….and we can’t wait !
We are extremely happy with the results so far, they are small but still very important and can’t wait to see how he improves for the next 3 months.
June 6th, 2008
It has been a good week, Justin has been doing well in physio especially today. His physio therapist said that he’s doing better and is a little stronger. She is very nice and likes Justin a lot. When we came out of physio the nurses were calling Justin to go over and see them, so we went over and they took him, hugged him and posed with him for the camera. We lauged so much because the nurses really went gaga for him today. I guess he was having a good hair day…..lol !
Tomorrow Justin will have his last stem cell treatment, again it will be a lumbar puncture. We’re keeping our fingers crossed for another good transplant.
June 5th, 2008
Justin had his second spinal puncture today and all went well once again. I must say that he is the best little boy in the world. He didn’t cry, even smiled at the nurses right after and he was very patient for the following six hours. This time he only slept for about two hours after but still had to stay in bed for another four hours to make sure that there would be no side effects. I didn’t hear a peep out of him the whole time. Justin is our little champ !
He has improved a little bit, while he sits on my lap, his back is much straighter and I don’t have to support him as much. So, in our opinion, the stem cells are working and this is only the beginning. The doctors say that you start to notice the bigger improvements about two to three months later, so we are quite happy so far with his improvements. Oh….and not to mention his voice is much stronger….when he doesn’t want something he lets us know “NO MO” he says in a strong, firm voice….lol
June 2nd, 2008
West Lake is a beautiful spot in Hangzhou. Unfortunately it’s so big that we didn’t get to see all the sites of West Lake such as the willow trees, the main garden, the fish pond and more. But we did see lots of statues, flowers and gazebos.
To our surprise, while we were walking around the lake taking pictures, people kept stopping us to take pictures of Justin. Everyone stopped to look at him, we couldn’t walk a few meters without someone cooing at Justin…..who would have thought that Justin would be the main attraction of West Lake….lol ! Two girls also wanted to take a picture with us, like we’re from Mars or something….lol ! It was nice though, everyone was friendly, smiling and even saying “hello” . Near the end of our walk, Jonathan told me ” don’t slow down or stop when people look at Justin anymore” because we were stopped so much and didn’t want to be late for the driver, but no matter how hard I tried to keep walking, walls of people would stop us to go “coochie coochie coo “ lol !!!
It was a great outing and it did us all some good to get out of the hospital. I would recommend seeing West Lake to anyone travelling to Hangzhou , China.
May 31st, 2008
Well, on the 10th day of our trip, we experienced something magical … Justin slept a full 8 hours… in the night! Yes, after 9 days and nights of sleeping 2-3 hour blocs, we finally got a full night sleep. Boy does it ever feel good.
Here’s a funny story… our first night in Shanghai, Karen and David Chow (which by the way welcomed us into their home and made our first night in China very comfortable… Thanks again!) wished us luck with Justin’s jet lag. Even a neighbour that we met on our “after supper” walk laughed at the thought of traveling with a baby… So back to the house we went, put baby in the playpen and pouf, he was out like a light. Sure enough the next morning, there I was bragging about how easy it is to travel with a baby as good as Justin… “I think we’re over the jet lag” I said… Man should I have kept my big pie hole shut! For the next 8 days, Justin tried pretty much every time zone in the world… sleeping his night from 8am to 4pm, then 11am to 7pm, and for the last couple of days, 4pm to midnight. If you asked us, here’s what we would say: “Thank god for coffee and energy drinks!!!”
Now, we are getting ready for our little trip to Hangzhou and West Lake. We are pretty excited about it. The weather is nice again today, 27-29 degrees. It should be a very enjoyable day.
We’ll take lots of pics (and for those who know Tatiana… that means LOTS of pics !.!.!.) that we’ll share with you all soon.
See you later and talk to you soon!
Only one more thing to say… “Bye Bye jet lag, we’ll see you in 2 weeks!”
Cheers!
May 30th, 2008
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