After a long travel with a couple delays we have made it to China and are getting settled in. I mentioned last update that we had the choice between a facility in Beijing or in Qingdao. We first chose Beijing but were then told Qingdao would probably be better for us and Dougs diagnosis, so that’s where we headed and couldn’t be any happier. Everyone here is so nice and the nurses are great with Dougie. They did blood work and got blood faster than we have ever gotten done in the states! (And yes I will be mentioning this to the nurses at labcorp). He says hi in Chinese better than English and we are also working on good bye, Chi chen (at least that’s how it sounds, haha)
When we first arrived at the hospital after such a long trip our hopes were a bit down and we were feeling very alone in our situation, but since then we have met and talked with several great people who are here for themselves or their children and that has been so uplifting. Currently there are 3 other families here from the US and a couple more from Spain and Argentina (so my Spanish did come in handy).
Doug is having a little trouble with the whole time change adjustment as we are now 12 hours off from NJ! When its 9am there it is 9pm here (the next day). We tried to lay him down for a nap the other day at 1 and he slept till 10! We can only assume as soon as we get comfortable with this time change we will be head back to NJ to start this sleepless fight all over again!
Doug got his first IV treatments today (Friday 3) and did great. They like to start off with IV treatments first to make sure there are no signs of allergic reaction to the stem cells in general and so far so good! Doug’s doctor, Dr. Tony, is really nice. The original treatment plan was 8 IV injections but after going over Dougies medical records and meeting him in person Dr. Tony is now recommending us to do half IV injection and half Lumbar Puncture (LP) injection. This LP injection was something we were very wary about in the beginning being that we would be in China, but after seeing how amazing and experienced the doctors and nurses are with young children it has made us a little more comfortable. We have decided to try it once and see how things go. The toughest part of this LP injection is trying to keep Dougie lying flat and still for 6 hours post treatment. This minimizes some common side effect such as headaches, nausea, and low grade fevers. The longer we can keep him lying still the less the affects will be. They have assured us if we need further medication to help with these side effects they are available. We have full confidence in their capabilities at performing this procedure and Doug will be receiving his first LP treatment Monday.
Out of the Hospital we are like celebrities, People are walking by staring and asking what Doug’s name is. They are amazed to see the blond hair blue eyed little guy. Crossing the street here is like playing a game of frogger, (Thank goodness we have had experience in that game! Haha) and we are lucky enough to have a McDonald’s right across the street. We haven’t made it to the market yet, but hope to go this weekend.
We just want to take some time to say Thank you to big Doug’s Family (Dougies Grandma and aunts) for setting up the Hawaiian Luau. It might have rained but that didn’t stop anyone from having fun! We raised another $700 from that and got to enjoy friends and family before our long travel here. Thanks to everyone who came and partied like a rock star out in that rain! You all are AWESOME!
We will try to keep updating as much as possible! We have been having good luck with our internet since we got here and hope it stays that way. Until next time……. CHI CHEN
- Doug was born on September 1, 2010. At 2 months old he was diagnosed with Optic Nerve Hypoplasia(ONH). ONH is when you have an under developed optic nerve causing vision impairment. In Doug’s case, his optic nerves are about 75% smaller than average size. We were told there was nothing we can do to improve his vision, but we refused to believe that was it. After hearing about stem cell treatments being done in China, that include multiple injections & various therapies, we began fundraising. We were able to raise enough money and went to China end of July, 2012. Since then we have noticed multiple changes in Dougie's vision. He is responding to things double to triple the length he was prior, and also reacting to different colors that he had never responded to prior to going. We are ready to go back and have began fundraising for more treatments because we feel they will only improve his vision more. These treatments are not cheap and insurance does not cover any of it. Starting at $24,000 plus travel and expenses, we need around $40,000 total. We did it once; we know we can do it again! Please help us create this MIRACLE and help give our son the gift of sight.