Just wanted to give a quick update on how things are going at home now. I have to admit, I had a hard time adjusting to being back at home. I was looking forward to it so much, but guess I forgot how overwhelming all of the daily household “stuff” can get. I loved seeing Neil, Carter and our little puppy, Gus… but hating seeing all of the laundry and dishes and everything else that needing cleaning. Oh, how I miss all of the nurses helping with Hailey and having a doctor there at all times, my cleaning ladies and the laundry and food lady! While hospital life can be quite boring at times and I was homesick a lot, it was relaxing and I had plenty of time for Hailey, myself, or anything else. I was actually a little depressed and overwhelmed the first few days of being home. However, I am feeling much better now and am getting better adjusted to our “normal” hectic life.
I’m dealing with it much better now and have finally gotten over my cold. I was just going through so many emotions and everything was just really getting to me. I don’t know if any of you have ever experienced a 12 hour jet lag… but it’s terrible! Not to mention… a few days after returning home, Hailey’s seizures got much worse. I’m not sure if it’s from the change of environment, jet lag or what. I know how I felt coming home after nearly 7 weeks, so maybe that’s just how she dealt with it, by having more seizures. I’ve been in close contact with the doctors in China and we have adjusted some of her meds and she is doing so much better now… as good as before. The doctors there are great and have always gotten back to me very quickly and were very concerned for both Hailey and I. They are always so helpful and genuinely concerned for us. I miss them so much 
We can’t wait to see them again and are just very eager to see more improvements in the coming months. The doctors say that we’ll see the most improvements after Hailey’s third trip, so we are very excited about that.
I’m sad to say that after a few days of being home, I have noticed some regression in Carter. He has become a bit more clumsy and is falling more frequently. We are very concerned about him and are hoping he can hang on long enough, until we can get him treatment. As I’ve said before, if we do not hear from the clinical trial in New York soon, he too will go to China. Hailey and plan to go back in 3 months and if need be, Carter will go along. It aches me to see him regress right before our eyes and feeling like I don’t know what the best thing is for him. I just can’t bear to see him get any worse and couldn’t live with myself if I let him regress anymore because we waited too long. The only reason we are holding out for the Cornell trial in N.Y. is because we feel that it is the much better treatment option for him. Also, once he goes to China for treatment, he is disqualified from all U.S. trails., but it may just come down to whatever is available NOW.
Other than that, things are finally settling down and we are all getting back into the groove of things. It’s just so weird being away from home for so long. Though it’s VERY different there, I actually like China now and think of it as our second home. The entire staff there is so accommodating and make the whole process as easy as possible.
As I’ve mentioned before, we still have a long way to go with fund raising and really need to get on the ball with things, so your help is greatly appreciated. Please continue to keep us in your prayers (especially for Carter’s treatment) and continue spreading the word (that has been an excellent source of not only raising awareness, but also helping us raise money for Hailey and Carter). Our local news station came out today and did a story on us and I will have a link up for that ASAP. Until next time, thank you all so much… take care and God bless.
