(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
Justin had his second treatment today. It was through a spinal injection, so he was sedated. He now has to lie down flat for 6 hours so he doesn’t get a spinal headache. Right now we are in hour #4 and he is playing with his toys and kicking his feet. Two more spinal injections to go!
February 22nd, 2008
It has been just over 24 hours since Justin’s IV stem cell treatment and we have already seen results. Until today, Justin has never locked eyes on an object or tracked (followed) it when it moves. Well, today he did just that… numerous times. We tested it, the doctors tested it and we have it on video of him locking his eyes on an object and following it & moving his head to watch it. He did it on objects that make no noise or have no blinking/colored lights on it. We do not know if he is seeing the details of the object, or just a shadow or blurry image, but it is a start!
February 19th, 2008
Hang Zhou 5:45 pm 2/18/08
New Jersey 4:45 am 2/18/08
This afternoon the first Umbilical Cord Stem Cell treatment was done via IV. Justin was a trooper… even though it took a few times to get the IV to stay in. He was playing happily with his bell & toys when we got back to our room and now he is napping.
One down… three to go.
February 18th, 2008
We are settled into our temporary life here in Hang Zhou. We go daily to the RT Mart – which is kinda like a mall and super Walmart all in one. Anything we need, they have. It is about 2 blocks from the hospital. Everything is in Chinese, but we have been able to buy shampoo, soap, peanut butter & jam, bread and bottled water very easily. We look for logos of brands we know.
Many things are very different than life in NJ. Driving in China is unlike anything you could ever imagine. Lines on roads are merely suggestions and at times there seems to be no order to who has the right of way: cars, bike riders, scooters, or people on foot. It is crazy but we haven’t seen one accident…. yet.
We have also found that buildings, restaurants, and many common areas are not heated. So, imagine in the heat of summer – probably no air conditioning either. We are glad we came in February!
When we say that people stare at Justin, that is an understatement. Today we went to the West Lake (Sunday is our free day) and we could barely walk for 2 minutes without a crowd of people surrounding us and staring. Many people took pictures and some made their children stand next to the stroller and get their picture taken with Justin. I starting taking pictures of the people taking pictures of him – which is one of the pics above. The other pics above are two of the many pagoda’s at the West Lake.
The food/eating situation is getting harder. Today, since we were “off” and went sightseeing, we did eat at McDonalds and got an iced coffee at Starbucks. For dinner, we ordered our standard Chinese dinner: fried rice with egg, spring rolls, and sweet & sour chicken. We are already writing a list of foods and meals we want when we get home! Jason wants a brocolli pizza from The Country Store in Pedricktown and Lora is looking forward to Mom’s lasagna.
Tomorrow (Mon, Feb 18) is Justin’s first stem cell treatment via IV. While our family & friends sleep Sunday night, Justin will be one step closer to gaining sight.
February 17th, 2008
Lunch in Beijing
The Great Wall
Arrival at HangZhou Hospital
February 15th, 2008
Hello Family & Friends-
We arrived safe and sound, and a little stiff & sore from our long plane ride to Beijing. Overall the flight was great – Justin didn’t cry at all. We are at our last night in Beijing and excited to get to Hang Zhou. Tomorrow is a 2 hour flight south to the hospital.
While here we were able to see The Great Wall, Tiananmen Square, The Forbidden City, The Olympic Village, and many other unforgettable sights. There have been non-stop fireworks shows at night since we arrived. They are still celebrating the New Year – some people celebrate for nearly half a month. Everyone lights fireworks in hopes of calling upon the God of Wealth to bless them for the coming year. Street sidewalks, intersections, everywhere fireworks are being set off! Thankfully, the show stops around midnight.
The food was great the first day, but today it was a little more difficult to find things to eat during sightseeing. For dinner instead of squid, pork necks, beef (that we couldn’t cut with our knife), or a wide selection of other seafood, we opted for Lo Mein Noodles and watermelon juice.
The people here love Justin to death and are not shy about coming up to him and telling us how lovely and beautiful he is. Hopefully the reception we get at Hang Zhou will be as welcoming as it has been here in Beijing.
Hopefully next time I write, the first treatment will be done. I look forward to sharing this miracle with everyone!
Love,
Jason, Lora & Justin
February 13th, 2008
We have 5 more days to prepare for our trip. It’s very hard to believe this is all actually happening. Almost everyday we ask each other if we are living in a dream. Back in August 2007 when we were told Justin was blind, our lives stopped and our hearts were broken. Initially we were told Justin had double-vision. What a relief… he could see!! But the next day we were told that he was actually completely blind and we received a list of local Schools for the Blind from the doctor. Nothing can prepare you for something like that. I have been thinking back to those initial days and we were going through a process of mourning. I tried to stay positive, but it was nearly impossible. From that, I started to accept Justin’s, and our, reality. Things would be different, our future plans now don’t work, and we don’t really know what to do next.
I became obsessed with researching ONH, potential treatments, case studies, etc. I contacted a doctor in Boston who was doing research on this condition, but got no response. Then somehow, I don’t even really remember how, I found this program and applied for acceptance into the Stem Cell treatment program for ONH. I was so excited that I could barely sit still. After being told by many doctors that there was no hope that Justin will ever see, I found something that might work! From that day on our lives changed and ‘Justin’s Fight for Sight’ was born.
This is a very emotional experience for us and some days it hits me like a ton of bricks – Justin is blind.. I have a blind child..This isn’t fair to him…Why did this happen? When I get down and think this way, I just have to let it run it’s course and mourn a little more. Many people have been praying for us, helping us financially to afford this treatment and trip, and supporting us in so many ways. This has brought us closer to God and the direction of our lives has forever changed. Justin is an amazing little boy who shows his love for us everyday in many little ways. I now know what ‘Love is Blind’ really means.
I never quite understood how God performed miracles, but now I do. One Bible verse which gives me some comfort is John 9: 1-4, which reads: As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”
I hope to write again during our stay in Beijing. We will be there for a couple days prior to arriving in Hang Zhou February 14 for the treatment. Please write to us, I’m sure we will need to hear from our friends and family to get us through this! We love you all!!
February 5th, 2008
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