This will be my final update from China, as the next few days are going to be very hectic. We will have meetings, last minute errands, packing, getting meds in order, doing final interviews and so much more. While I’m very eager to get home, I will really miss it here. I’ve made a lot of good friends and I love seeing Hailey get better and better. If it weren’t for Neil and Carter, I would stay for as long as it took. Hailey has made even more improvements with this trip, than with our previous trip. Oh, more good news to share… they are going to try and get a fund raiser started here in China for us! I just hope they are able to pull it off! That proves that they genuinly care about us. They love Hailey so much and say that they will really miss us.
Hailey is doing so much better and is completely over her infection now. Thankfully it wasn’t that bad. She’s still a little weak from it and has been sleeping quite a bit. I know I’ve mentioned this several times, but I would like to list all of Hailey’s improvements again, for those who have not seen the previous posts. She is so much stronger now and is able to hold her head up for long periods of time (which she has not been able to do in over a year). She is able to move her arms and legs now. Her lungs are much stronger and she is able to breath SO much better now, with less congestion. Her pupils are responding to the light more, meaning that her vision may be improving. She is so much more alert and “with it.” She is making more facial expressions and I can tell when she is happy, sad or uncomfortable. She is trying to roll over again. She is babbling all the time and responds to our voices. Now when we pick her up, she isn’t as limp, she has much more muscle control. Before the treatment she was pretty much just there and completely out of it. I really can’t believe it, I’m overwhelmed with joy and I can’t wait for her third trip.
Carter is still doing well and is stable. We are really eager to hear back from Cornell in N.Y. (for the gene therapy trial). If we don’t hear from them soon, he will join Hailey and I in China. Neil will have to come too. There is no way I could handle taking two kids on a trip like this, especially since Cater is still so active.
So… only 2 more days!!! The 6 1/2 weeks really flew by and I kinda enjoyed it here. It was very relaxing and I got to spend a lot of quality time with Hailey, though it was pretty boring at times! Everyone here makes the process so easy and they are so accomodating. The hardest part was being homesick and missing Neil and Carter. I am really dreading the flight home. It is a long flight… 13 hours and Hailey does not do very well sitting up, so I spend most of the time holding her. She didn’t sleep much on the way here either and I had to carry her to the back of the plane to change her diaper 7 or 8 times… and she is more than 60 pounds now! Hopefully it will be easier coming home and I’ll have something to look forward to.
As soon as we get home, I will be back to work on fundraising. I’m not really looking forward to that, it is a lot of hard work. To get a head start, I ask everyone that reads this to please help us spread the word to everyone they know and have them do the same. Even if everyone could just donate $1, that would really add up. Every little bit helps. We would be extremely grateful.
I will update as soon as we get home, to let everyone know that we made it home safely. WHAS 11 wants to do an interview with us when we get back, so be on the look out for that. If they put a link up on their website, I will add it to our website as well. So for now, I do ask that everyone pray for our safe return. I cannot wait to get home and show off all of Hailey’s improvements!
This has been the worst thing I have ever had to endure in my life and I wouldn’t wish this on my worst emeny. I hate this disease so much. I hate that it is taking my children from me and I cannot stand seeing them suffer. But at least we have some hope now and somthing to look forward to. Seeing Hailey get better makes it all so much easier to endure. I just hope and pray that they can hang on long enough to see the cure. Like I said, she still has a long way to go, but she has made remarkable progress. There is also more to come in the months ahead.
Miranda, I’m Mary Payton’s grandmother and Nikki’s mother and Nikki speaks of you often. Just remember that we keep you in our prayers and hope you will keep us in yours. Those families not affected by this disease can’t really understand the heartbreak it can bring, but we have been blessed with much love and support and I know your family has, too.
My specific prayers for you today are that Carter will be a part of the clinical trail at Cornell and Hailey will show improvement as a result of her latest treatment in China.