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
(click on picture to enlarge)
Wow.. I remember thinking back to when we had 7 days to go to leave for China.. now I am thinking of coming HOME!!!!
Although we are tired of being here and more than ready to be back home, I am thankful we had this time to spend together as a family and to help our son. I wouldn’t trade anything for this experience - no matter how horrible the food, or lack of privacy, or sore backs from the hard beds. We would have gone anywhere in the world to have this done for Justin. We never saw this as a sacrifice until people started pointing it out to us. Although other areas of our life have been put on hold, or not made a priority, we never really even thought about that. I am very anxious to get home and spend some quality time with my baby before more of life’s demands get in the way. Now that Spring is almost here, I am looking forward to long walks in the neighborhood, sitting outside working on my flower beds with Justin playing in the grass, cookouts on our deck, walks at Riverview Park, and maybe even a weekend at the Jersey Shore with Justin’s aunts, uncles, and grandparents. Thinking of these things are helping me look past the mere 7 days of boredom we have left.
His final treatment is Monday and we got it changed to an IV. Physical Therapy has been cancelled, by us. Justin was not tolerating it well at all and it made him so upset. He is going through so much already, we didn’t see the need to push him to crawl or stand. It is more important that he is happy and healthy right now. We think he has a headache since whenever we pick him up he pushes away and seems happy laying down. That is another reason I don’t want the other spinal injection - I don’t want him having a headache for our long flight home. He responded so well to the first IV treatment and he is so little that I don’t want him sedated again so soon.
I am looking forward to feeding Justin in my arms again. There is no rocking chair here and the tiny chair in our room isn’t good for feeding. I miss holding him and rocking him. I wish they had a rocking chair!
Our ABC news story aired. Here is the link to the video. Overall it was a good story, although some of the details about this treatment are left out. There are always skeptics to any new or unconventional treatment (think of the first chemotherapy treatment - I’m sure it was not widely accepted), and sure this treatment isn’t a 100% guarantee, but nothing is. If the stem cells are helping Justin’s body repair itself and give him a better quality of life, then this trip was worth it. What more could we ever ask for?
http://abclocal.go.com/wpvi/story?section=news/health&id=5979698
March 1st, 2008
Hangzhou 4:30 pm 2/27/08
NJ 3:30 am 2/27/08
We just got back to our room after a very difficult procedure. It took 2 hours, 3 IV sticks and an (unsuccessful) tranquilizer to get this procedure done. The IV line finally went into a vein - in his foot this time. We don’t necessarily think it is overly painful for him, we just know that he HATES being restrained so he gets very mad, irritated and upset. Justin is very sensitive to touch normally - he doesn’t even like to have his hands touched by us, so you can imagine how mad it made him being held down by 4 nurses. It was hard for us to watch and nearly impossible to comfort him, but with 10 minutes left of the procedure, he finally calmed down and went to sleep. He is now sleeping (pic above) with Georgie his sleeping buddy, and we hope those stem cells are working hard inside him.
One more injection to go - a spinal on Monday March 3.
February 27th, 2008
(click on picture to enlarge)
Justin started PT this week and so far it is going well, even though he fake cries during the whole thing (no tears, just whinning). He doesn’t like being “told” what to do, but he tolerates it. They are teaching him the movements for crawling and for standing.
We are noticing small changes with Justin each day. He smiles and giggles so much now… just at random things! He has discovered his hands and spent quite a lot of time looking at them. We now have to teach him to match up the noises he is familiar with to their images - like his toy bell and rattles. When he sees something he will not touch it until he hears the noise it makes or we give him another cue so he feels safe with it. We now don’t have to tell him to “Open up” when feeding him, he automatically open his mouth when the spoon gets in his visual range. He also reaches out for his bottle when he sees it. We don’t give him an cue that the bottle is coming, we wait for him to find it on his own. Also, he is rolling over so much.. something he didn’t really do before.
We are thrilled with the progress he is showing. He is doing things that we only dreamed of before!!
His next treatment will be Wednesday 2/27 (Tuesday night back home) and it will be via an IV. He responded so well to the first IV that we are replacing one of the spinals with an IV treatment since it is easier on him.
February 26th, 2008
Previous Posts
