Justin is now almost 3 years old and doing fantastic!! I get emails all the time from ONH families and my heart breaks for you all but I know there can be a happy ending!
Justin’s sight is better than we could have ever dreamed of. He is learning how to use his vision so much better. He has learned 5 colors, he points to random objects and tell sme what they are or what color they are, he sees the tiniest littl ething on the floor and goes and picks it up and puts it in the trash! I never thought he woul ddo that!!!! I put index cards all around the house with words written on them so we would start to learn objects and their names, well he did not like that and went around and ripped them all down! My favorite thing is walking into the living room and he is sitting on the couch looking at a book and pointing out all the things that he knows! I just stand there and watch him and love every second of it!
His speech is getting better by the day and he is catching up on all the 2-year milestones. I don’t see any reason for him not to be mainstreamed when he reaches Kindergarten. He goes to pre-school a few hours a week now, and it was been such a blessing. His aversion to touch is getting better as well. He will not pick up crayons and draw lines and dots, he will play with play-dough, he’ll touch fuzzy things now, he lets me puts hats on him, and he has started feeding himself with a fork! SO many changes and I contribute most of them to the treatment. I don’t really know what he would be doing now without his sight.
We had our semi-annual opthalmology appointment recently and he is still too young to get an eye test done, so we don’t know his numerical eyesight. The Dr said his eyes look great and he can obviously see very well.
Here are some recent pics of Justin — please feel free to email me with any questions.
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Dec 2009
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Halloween 2009 – Prince Charming
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September 2009
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Peek-A-Boo!
January 14th, 2010
Justin’s vision continues to amaze us. Although I don’t think there has been any more improvement, I definitely feel that he is learning to use his sight better. It has been 19 months since his treatment. Right now, we still have weekly physical, occupational and speech therapy. He is catching up on a lot of his developmental milestones and he is starting a pre-school program this week!
He loves tractors, cars and playing ball. He is learning to catch and to throw at a target. He is really doing great and I am anxious to see how he does in school – away from familiar and comfortable surroundings.
The crossing of his eyes is better, but it is not totally gone. He will probably need a few more surgeries to fix the crossing, and we will start to explore the use of glasses to help him.
Please contact me if you have any questions about our experience in China, or about Justin’s progress.
September 7th, 2009
It has been one full year since Justin received his treatment! His progress has been amazing. We saw our Opthalmologist at AIDuPont this week and he says Justin’s vision is good and he can definitely see out of both eyes.
I had been questioning if he can see color, but my worries were recently put to rest. Justin LOVES goldfish crackers, but only the orange Cheddar ones. So, when I bought a pack of the multi-colored fish crackers, he picked out all the orange ones and only ate those! I couldn’t believe it!
He had surgery in January to correct the strabismus (crossing) of his eyes and his alignment is much better and he is now using both eyes to see instead of only using one at a time like before.
Justin does many amazing things visually. He played peek-a-boo in the dark car while on a tnight rip! When I ask him to bring me a specific toy, he looks around the room and goes right to it and brings it to me! If a door is open in the house, he’ll run right over and close it. He does so many things that I never dreamed he would do.
In many ways this whole experience feels like a dream. I can remember very vividly getting the diagnosis back in August 2007. It still pains me and I still feel those sad feelings. This treatment changed all of our lives and I can’t imagine our life if Justin wasn’t treated. He will always be visually impaired, but he is no longer blind. My prayers were answered and I will never want a single thing in life again. We are lucky and I can only hope that other ONH parents consider the possibilities that this treatment can give to them and their child.
I hope to have his website back up and running soon (www.justinsfightforsight.com) for other parents to use as a resource.
March 6th, 2009
We can hardly believe it has been six months since we were in Hang Zhou, China. Our life back home has been very busy and extremely blessed.
Justin’s vision is so remarkable that strangers don’t believe me when I say he was born blind! Aside from the nystagmus and strabismus (which is getting better!), you wouldn’t know Justin had a visual impairment. He looks at objects from across the room and crawls so fast over to it and picks it up. His newest facination is closing our bedroom door and play with himself in the mirror! He locks eyes with everyone — which is my personal favorite achievement for him. It killed me knowing my little baby couldn’t look me in the eyes. He loves to try and grab the camera when taking photos, he chases after our poor cat, and he loves taking bike rides and looking all around. He is no longer afraid to reach out and touch something new and he is much better socially around new people or places.
His depth perception and 3-D perception is getting better. He is so close to walking now and his speech is slowly coming along. He has been playing “catch-up” the last 6 months and before long he’ll be just like any other toddler!
We are now patching his dominant eye to try and help the strabismus but if that doesn’t work out, he’ll have surgery to correct it. We can’t imagine how much better his vision will be after this is corrected. He is also getting new optic nerves photos taken soon to see if there is any difference in their size and color. Justin’s doctors are extremely pleased with his results and were truly shocked at the change in him!
August 28th, 2008
Justin had his first Opthalmology appointment last week. This was the first time his doctor has seen Justin after our stem cell treatment. The doctor was extremely impressed with the remarkable improvement. He could barely believe it! It was obvious to him that Justin now has vision and he was almost speechless at the improvement. It felt so good to FINALLY have vindication from his doctor!! It made it all worth it! He will be closely following Justin for the next year and is excited to see what will happen. Justin is his only ONH patient to have this treatment, and the doctor agreed that this is the future of medicine in the US!
Justin just turned 1 and we had a small party for him. Here are some pics from the day. He was having so much fun looking at everyone… but not so much fun with his cake!
April 28th, 2008
We have been home a month now and finally we are all sleeping through the night!! Justin is progressing in so many ways – we feel like every single day he does something new. We went 9 months without many milestones met, and now Justin is definitely making up for lost time! Since we’ve been home from China Justin has started crawling, transitioning from laying down to sitting up and vice versa, trying to talk, he reaches out for everything and is getting into everything! We had to baby proof the house since he just gets around so good now. He reaches out for the camera when I take his picture, and he actually turns to look at us when he say his name! He is also trying to feed himself with the spoon when I bring it in close to his face. These are things that may seem so trivial to other parents, but for parents of a blind baby, these are miracle events!
He has finally gotten over the tantrums when meeting new people and he doesn’t cry when someone other than me tries to hold him. He has come a long way in a month.
We definitely know in our hearts that we made the right decision to go ahead with this treatment. There were times we doubted ourselves, but when Justin sees a toy across the room and goes after it, thats all the reassurance we need. We hope he will continue to improve and one day find out exactly what he can see -although it won’t be until he can tell us, so we have to be patient!
April 9th, 2008
We have been home for almost 2 weeks. Justin is stillnot sleeping throughthe night and his appetite is still huge! He gained 3 pounds while in China!
We didn’t expect Justin to have such a hard time adapting back to life in NJ. Whenever someone comes around to visit, or when he is around someone other than us, he gets extremely upset. I think it is a trust issue and the fact that he doesn’t recognize these people. He is getting better with his Grandparents, but he still gets upset and Jason or I have to hold him.
When we got home, we could tell Justin didn’t know where we were. It took a few days for him to remember his home and to put the visual image with the familiar sounds and smells. Transitioning to life with sight will take time.
His vision continues to improve. He reaches out for toys more and more, has started to attempt at crawling, and turns his head towards noises to see what it is. These are all things he never did before the treatment. It is amazing to watch his improvement and progress everyday. We feel his vision now reaches approximately 3-4 feet in front of him!
March 20th, 2008
Today is bittersweet. We are anxious to get home, but we also feel like we are leaving behind our China family. We have made some good friends here and will miss everyone.
We just finished the last meeting with his doctors. The Head Doctor – Dr. Mike (who we love dearly!) explained how Justin had such quick results. The stem cells have helped Justin’s body start to repair or heal itself. The stem cells alone would not have had time to latch on and grow to have such drastic improvements only 24 hours after his first treatment. Dr. Mike said that the stem cells will continue to grow and repair the optic nerves.
Justin is still looking around a lot! He is locking eyes with us occasionally and he definitely still sees and tracks his toys. We think he can see something when it is put about 1 foot or so from his eyes. He isn’t actively looking around for his toys yet, but that habit will change as he gets familiar with his newfound sight. For the last 10 months he has had to learn to function as a blind baby, so those habits will not be soon broken.
We feel comforted that his body accepted the help from the stem cells and was able to work to heal itself so quickly. We are now looking forward to experiencing what the stem cells will do once they really take charge and grow those nerves! Justin’s progress is only expected to get better and better over the next year.
From Justin’s whole family – even those back home in the United States:
Thank You – Xie xie
Dr. Mike and Dr. Tony,
all the nurses,
Luca, Jerry, and Johnny;
for treating us like family, for looking out for Justin’s health and well-being, and for giving our son the gift of sight! You have given our family the most precious gift in the entire world – we are eternally grateful.
March 6th, 2008
I never in a million years thought I would be celebrating my 30th birthday in China!!! Jason did a great job making sure the day was special. Check out the flowers – 14 roses plus tons of other flowers for only $35 (250 RMB)!! The threw a pizza party for me and invited the other families. He even got a cake from the RT Mart for $11 (80 RMB). I had 2 cards to open from home and got a few nice e-cards and birthday emails! Thanks everyone… the day was very nice. I couldn’t think of a better way to start my 30’s than coming home from being in China for nearly a month!
(click on pic to enlarge)
March 4th, 2008
The 4th – and final- injection is complete!! Getting the IV in was difficult, again. Justin is now to the point where he knows when we walk into the treatment room, so he immediately starting getting upset before the nurses even touched him.
Today we cannot get onto any other internet sites except this one, so I cannot check email. I’ll try again soon.
It is Monday night (3/3) 6:30 pm and we are getting ready to go to the RT Mart for the last time!!!! I was just starting to get used to the smell too.
March 3rd, 2008
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