Sorry it has taken so long to write this post. We did make it home at 11:50 pm Tuesday night. I think our flight from LA felt longer than the one from China. It was hard knowing we were that close to home but still had to wait. Paden did great on the plane and was excited to see everyone when we got to Austin. He has been in Austin since we touched down and should be back at home on Sunday.
Just wanted to let everyone know that we made it back ok and we will keep everyone posted of our progress. Thank y0u so much for your prayers.
June 22nd, 2008
Well the day has finally come. Paden and I are headed home today!!!!! It’s currently 7:15 am and we are getting up and ready to go. We are completely packed (and have been for a few days) all I have to do now is get Paden out of bed and we should be set. We leave the hospital around 1:30 (12:30 am CST) and we leave Qingdao at 2:50 (1:50CST) and we will arrive in Austin at 11:59 pm. We are excited that Uncle Justin, Brian, and LaLa & Uncle Kev will all be waiting for us when we get off the plane. It’s going to be so nice to see familiar faces again. Well we will post again tomorrow to let everyone know that we made it home ok.
June 17th, 2008
Well for us our Saturday is coming to an end which brings us one day closer to coming home. Paden and I are very excited to head home, it has been a long trip. Everything has gone very well here and we are excited to see what still lies ahead. Paden will have his blood drawn in the morning (at 6:00 am!). I’m a little nervous about having enough hands to hold him so they can actually get what they need. I guess we will make it work. I think after that all he has left is acupuncture on Monday.
We are already packed for the most part, except for what we are wearing the next couple of days, so Tuesday will be just waiting till it’s time for us to go to the airport. We leave here at 2:50 pm and arrive in LA at 2:30pm, that still seems strange. We have a 5 hour layover at LAX before heading to Austin. We will arrive in Austin at 11:59 pm and then finish our trip by heading home to sleep in our own beds. Until you’ve slept on a box spring for a month, you have no idea how good this will feel to us.
I know even after we get home it will still be hard to believe that we were in CHINA! This is definitely a place that I never thought I would come to and I know this will be an amazing story for Paden to tell when school starts again. It is very hard to believe that we are here and have been for this amount of time. I know Paden is going to miss all of the friends that he has made, not only the other patients but the staff and nurses. He has already told most of his (9) girlfriends that they can come home and live with us. I know he will never forget this experience. I am just glad that there have been enough positive memories for him so that he doesn’t just remember the sticking and needles.
I will definitely have one more post before we leave but that will probably be our departing message. I am so ready for this part of our journey to come to an end but it still hasn’t hit me that it really is ending. The best part about our departure is that we are leaving a room open for the next family to experience the same things that we have and bring them one step closer to what they have dreamed of.
I would ask that everyone please continue to pray for all of the families that are here and all the doctors and staff that are making this treatment possible for so many people. This is truly an amazing gift that they are giving people!
June 14th, 2008
Our last injection is behind us!!!!
Paden had his last injection today and is currently laying in bed. He has about 2 hours left and then he can get up and have his PB&J and play. Just like the last time he came back to the room awake, so it was challenging to keep him laying still and it seems like it takes so much longer when he doesn’t sleep, but it’s almost done. All we will have to do now is accupuncture. He is scheduled to have that Thursday, Friday and Saturday and I assume they will go ahead and do it Monday. Then Tuesday we’re headed home!!!!
June 11th, 2008
Well yet another change was made today. They have decided to do Paden’s last injection tomorrow (Wednesday 11th). It will be good to have it over with and then all we have is accupuncture until we leave. I think Paden is pretty excited to be done with the injections. He did very well with his accupuncture today, he only cried a little when they put them in and not at all when they took them out. I think he might have it mastered by the time we leave. I guess that will still be ok because I think that is something that we will continue for a few months when we get home. I will post again after his injection tomorrow so you all know how the last one went.
June 10th, 2008
Sorry we haven’t posted lately. There hasn’t been much going on here. There was a Chinese holiday this past weekend so Monday there were no injections. Paden’s last injection is scheduled for Friday the 13th. We got out a little yesterday and did some sight seeing. We had fun, we went down to the water again, and walked around downtown. We finally stopped at Starbucks, it was nice to get something familiar, that we can actually get in the US. I think we are going to try to get to the zoo tomorrow, we’ll let you know how it is.
June 10th, 2008
Treatment #4 is now behind us. The doctors were running a little ahead of schedule today so Paden actually went for his treatment about 30 minutes early, which was good. He was awake almost immediately after the injection though. Luckily he was still pretty groggy though. We could tell that he wanted to fight and pull his oxygen off but he just couldn’t do it.
We have officially started our countdown, we will be leaving and heading home in 10 days!!!!!!! Paden has done so well so far and he’s pretty excited that he only has to do this one more time also. Luckily we have got him some new toys so he is not completely bored anymore. He is really looking forward to getting home though. He has plans to stay in Austin with his LaLa and uncle Kev when we get back and he is really excited because his Papa has got him the drum that he has been wanting.
Well we are still noticing little things each day that we think are improving with Paden’s vision. We are all very excited to see what the doctor has to say when we get home and then again in a few months. Our journey will not be over when we come home but it will all be worth it in the end. Please continue to pray for his progress and we will continue to keep you posted.
June 4th, 2008
Well here is our schedule for the week; we have accupuncture M-F and the 4th injection on Wednesday. We are out of luck on coming home too early, due to a Chinese holiday we will not be having the 5th injection on Monday like originally thought, it will be on Wednesday the 11th. After the last injection Paden has to stay at least 3 days so it looks like the earliest we could leave is Sunday the 15th. We are so ready to come home and sleep in our own beds and Paden is ready to get back to all his toys.
We went to Polar Ocean World yesterday, so it was nice to get out a little bit and see some animals. Roger and I both got a laugh at one of the tanks because it had Paddlefish in it and the sign went on to tell about how they are found in North America in the Mississippi River. We thought it was ironic to come all the way to the other side of the world and see something like that. Of course Paden’s favorite part of the trip was looking at all the toys in the gift shops, he came back with a ton of light up toys!
Accupuncture went pretty well today, we still can’t talk him in to any more than 3 needles though. Maybe we’ll get there before we leave.
June 2nd, 2008
Sorry I haven’t updated the last couple days, our internet was down yesterday. All is up and running now. Roger, Paden, and I got out for a while yesterday and went to Walmart, if you can believe that. I had no idea there was one here. After an extremely interesting (to say the least) taxi ride we finally made it down town to Walmart. It was very different than home but there was definitely some familiar things there. When we got done looking there we went to a place called Jimo Mart, this is quickly becoming my favorite place to shop. We were all pretty tired from a full day of shopping so we just lounged around the hospital the rest of the night.
Today Paden had his 3rd injection, and by far the easiest. This was his first IV injection, it was great. Once they got the IV in, it took about 20 minutes and he was in the room and awake for it so he got to play while he was getting his treatment today. The good thing about the IV injections is there are no restrictions of food and drinking and he can move a little while he is getting it and immediately after it is over. We did lounge for a little while after the injection but he has been very active today.
Well the news that everyone has been waiting for….we have noticed some changes!!!! I was kind of testing Paden yesterday and showing him some different colors (dark and light) and shapes and he was able to tell me what they were from about 2-3 feet away. This is a pretty significant improvement because prior to treatment in order for him to tell us colors and shapes he needed to hold them right up to his face. Another big thing for us has been watching him play. He has been running up and down the halls and before when he ran he really didn’t run very fast and it never really looked like his legs were moving very well with the rest of his body (kind of flailing), now he is running straight and actually pretty fast. Paden has made a new friend with the boy a couple doors down, his name is Cody and he has ONH also. Cody and his family went to the store the other day and brought Paden back a ball. We Roger and Brian were playing catch with Paden and to our surprise Paden actually caught the ball a few times, this is something that has never happened before, I assume due to his depth perception.
Well that is all we have for now, we will continue to keep you all posted on our progress as we notice it. Thank you everyone for your continued thoughts and prayers.
May 30th, 2008
Well Paden is doing wonderfull after his treatment yesterday. He actually got some sleep last night, which was an improvement over the first treatment. I think he only stayed up playing until about 1 am. Paden didn’t get out today cause it was raining so we just hung out at the hospital today. I left for a little while to take Brian to the airport. I talked to him about an hour ago and he was boarding his plane in Seoul, headed for LA. He was pretty excited to get back to the states and find some breakfast!!!! Of course I hated to see him go, but, at least he was able to be here for a little while. Roger is still here and will be for the next few weeks.
Paden had accupuncture today and we managed to add an “antenna” today so we are up to 3. We are not sure how many they will try to work up to but the little girl that is in the accupuncture room at the same time as us gets 8 so I think we have a way to go yet, but we are getting there.
Well we are off to a going away party for another family that is leaving Thursday, so we will write again tomorrow.
May 27th, 2008
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