Update from home 4/5/9

Sorry for the late update from home, but it has been pretty crazy around here trying to get settled in.  I’ve been just completely out of it for days now, trying to adjust to the time. The jet-lag is terrible and  I’ve also been very sick. I caught another bad cold in China and I think it’s turned into an infection. I’ll have to go to the doctor tomorrow. It’s just been getting worse and worse. Hailey and I both got sick a lot in China, probably because we are not used to their environments or germs. I just hope I don’t pass it on to Neil and Carter. Anyway, hopefully I’ll be feeling better soon.

So on to Hailey… she is doing so great! She did much better on the 14 hour plane ride home this time (last time she was awake the whole time and having a lot of chocking problems, due to congestion). This time, she slept nearly the entire flight… which means I got to! The first couple of days home, I just let her rest and adjust. After that, it was back to work! I’m continuing all of the therapy they taught me there everyday for one to two hours. I know that with more work, she will continue to improve.

So not to be too repetitive (I know I’ve mentioned this several times in previous posts), but I’d like to note all of her improvements again. She is able to hold her head up (with someone supporting her shoulders), she is even less spastic, trying to talk more, trying to roll over (with lots of help), is able to lift her arm (if someone is holding her elbow), her vascular system is much better than before, her eyes are responding to light more (like maybe her vision has improved), she is not as congested and needs less suctioning, her throat muscles are stronger and she is able to breath with much less blockage, the clonis in her feet has been reduced, she is making more facial expressions and is over-all so much stronger. When we were in the hospital, her seizures would fluctuate so much because they were adjusting her seizure medications, but now they are stable again. She is back to having just 5 -10 myoclonic seizures (jerks) a day.

I cannot even express to you how happy we are for her. We know that she still has a long way to go, but with time she will get better. Over all, we had a very good experience in China. Everyone was so nice to us and they all cared so much about Hailey. In fact, the other patients would get jealous because all of the nurses would spend so much time in Hailey’s room! The doctors think that after her third trip is when we will really start seeing improvements. There are also more improvements to come after this trip. It can take several months for the gene therapy and stem cells to completely mature, so we have a lot to look forward to.

Carter and Neil are doing well and were glad to have us home. We got in pretty late, but I just had to wake my Carter up to see him, I missed him so much. Carter is stable and I have not noticed any regression in the nearly seven weeks we were gone. We have a few things in the works with Cornell and are hoping to get it started pretty soon. I just pray that everything goes through and they can get started with the treatment very quickly.

So now that we’re back home, it’s back to my regular household duties. One of the things I liked most about China is that it was so relaxing (although boring and lonely at times!), I had someone to clean my room, do my laundry and bring my meals… now that’s my job again! Home sweet home! I’m happy to do it though, so long as we are all here together as a family again. Now, we’ve also got to get back to work on fund raising, so if anyone has any ideas, please do not hesitate to contact me. Also, be on the look-out for future events on the website! Thank you again to everyone!