Update- 4/26/09

We just wanted to give everyone a quick update on Hailey and Carter and tell everyone about some fundraisers that we are currently working on. First, of course, the kiddos… Hailey has been doing very well and her condition is stable. We haven’t really noticed anymore improvements yet, but we know there are more to come in the coming months. She made remarkable improvements while we were in China and I can’t wait to see even more. With our 1st trip, we noticed improvements in the hospital and many more in the months following her treatment.  I’ve still been staying in close contact with the doctors in China and they are always asking about Hailey’s condition, they truly care about her. I’m really looking forward to our next trip. The doctors say that with the 3rd treatment, we will really start to see major improvements.We plan on going back in 3 months, as long as we can raise the money. As I’ve mentioned before, we still need to raise $20,000, for our next trip. It may seems over-whelming in such a short period of time, but I know we can do it! To date, we’ve raised over $130,000 in about a year.

Carter is stable, although as I’ve said before, he is getting more clumsy. One of our local news stations (WHAS 11) is coming out tomorrow to do an interview with us. The reporter has been working really hard on the story and has even been to Cornell (N.Y.) to talk to the doctor there, that heads up the trial. This is the trial that we are hoping Carter will be a part of (as it may one day be the cure for Batten disease), but there have been many things holding it up… such as funding. She has also been to California to talk to the people at Stem Cells Inc. Now she is coming out to interview us. It should be a really good piece and she is trying to get it to go national. We all need to pray that it does, because that way someone may see it and privately fund the trial for Carter and so many other children. We have been waiting on the Cornell trial for some time now and hopefully this will help speed things along.

We do have a few fund raisers in the works that I wanted to share with everyone. They are all still in the beginning stages and there are no dates set as of yet. I will have more information soon. The first one will be a benefit similar to the one we did at the park. We are going to try to have this one at Iroquois Park, but as I said, nothing is set in stone yet. We are going to try and have it at he end of May. A very kind gentleman, named Randall Thomas, has been gracious enough to organize and host this benefit for us and we honestly can’t thank him enough. The second one will be at Molly Mallone’s (on BardstownRoad). For this one, we are going to try and shoot for the beginning of June. It should be a lot of fun and as I said, I will have more details soon.  The third thing that we have been working on is a huge yard sale, all to benefit Hailey and Carter. We will gladly accept any donations for the yard sale. Just contact us and we can figure out a way to get the items here. We are also going to start collecting baskets for the silent auctions, for both the park benefit and Molly Mallone’s benefit. They can be themed baskets, for instance a pet basket (filled with toys, treats and supplies), a baby basket (filled with baby toys, clothes and other supplies), an outdoor basket for kids (filled with outdoor toys), a kitchen basket (filled with kitchen supplies), a beauty basket (filled with girly stuff… bath stuff, lotions, make-up, jewelry), etc. We would also gladly accept any other donations for the silent auctions, such as gift certificates or anything that will help raise money. Again we can arrange pick up or you can bring it directly to our home. You could even mail it and we would gladly reimburse you for any shipping expenses. Just contact us and we’ll work something out. So just be on the look out for these future benefits and please help to spread the word. We really need big turn outs and lots of donations. If you would like to volunteer to work one of the benefits, we would especially appreciate that and again, just contact us and we’ll get a list started, maybe even say what you would prefer to do. We really appreciate everyone’s support through all of this and we cannot thank everyone enough for everything that has been done for us…. but unfortunately we still have a long way to go and we still need lots of help.  God bless everyone that has helped, even if it’s just through prayer. We truly believe in the power of prayer and we know that the good Lord is listening to all of us and He is answering our prayers. Hailey has really come a long way, from a year ago.

We also wanted to apologize for not having more of the recent China pictures up yet, but we are working on it. WordPress has recently changed it’s format and we are still strying to figure it out (it’s not very user friendly either!). But hopefully we’ll have them up soon. I will also put a link up to our interview tomorrow, as soon as they get it done. I know they’ll do a great job and hopefully it will help raise awareness for Batten disease, raise money for the Cornell trial and of course for Hailey and Carter.

Please continue to remember Hailey and Carter in your prayers. We also still really need help spreading the word. Please pass our story and website along to anyone and everyone. We’re gonna make this happen for Hailey and Carter and we’ll get our two miracles…. I just know it.

Please “Digg” Hailey and Carter’s Blog!

In order to spread the word over the internet, we are trying to get our blog onto more websites. We ask that everyone who reads this to please click on this link and “Digg” our blog. The more “Diggs” we get, the more popular our blog becomes and the more people go to it and help. Digg is a very popular news website. If anyone has any other ideas, as to how to spread the word across the internet (like posting it on other sites), please let us know. We would love to have more websites add a link to our blog to help raise awareness and of course, more funds for Hailey and Carter’s future trips to China. We have a really good looking logo, that could easily be added to another website, directing them to our blog. Thank you so much for your help and support!

Digg- Hailey and Carter’s Dream

Update 4/8/9

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.

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!

Update From Home! 4/1/09

Just wanted to give a quick update to let everyone know that Hailey and I had a very good… long flight. We are still a little jet lagged and have caught a little cold, so we are pretty tired.  We will have further updates tomorrow. Just wanted to let everyone know we arrived home safely.

Update 3/28/09

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.

Videos From China

Hailey’s O.T. and P.T. video

Tour of Hospital Video

Update- 3/23/09

Well, unfortunately I have to bad news to share with everyone. Hailey got another infection yesterday. She has a lot of stomach issues anyway and cannot tolerate much food or liquid, so she throws up sometimes. She threw up a little a couple of days ago and the doctors think that she ruptured something in her stomach, because she was throwing up blood last night. She was also having a lot of trouble breathing. They think that she aspirated some of the vomit and it caused an infection. Not pneumonia again, but a similar infection. They said it’s not that bad, but it was very scary seeing her throw up blood. She has never done that before and I was really worried about her.

She is doing much better today, although she is very tired. They do want to keep her for a few extra days to stabilize her condition. We were supposed to leave Thursday, now they want us to stay until Tuesday. I’m kinda sad about it and was really excited about going home to see Neil and Carter. I just can’t believe this happened, it was very unexpected. Even earlier yesterday afternoon she was doing great. Then she started getting sick around 10 pm. Before the infection, she was doing awesome! She’s holding her head up now, trying to talk more and more, is so much stronger, she’s breathing SO good and her lungs are functioning much better than before, her vision is improving and so much more. I’m so happy for her and I know that once she’s over this infection, she’ll be back to doing great, just like with the last infection. Thankfully this one isn’t as bad as the last one and she’ll be over it much quicker.

They’ve been taking really good care of her through this and are all really concerned about her… and even me (they could see that I was very upset). All of the nurses were in here, as well as a few of the resident doctors. They even called the two head neurologists, who were at home, to come in and check on Hailey. They were in here for several hours, trying to stabilize her condition and the nurses checked on her all through the night. They were all pretty upset about it too, because they were all very happy to see her doing so much better. They really care about her and love spending time with her, so they are sad that we’re leaving soon.

The doctors said that there will be even more improvements to come. It usually takes about a month to see the results of the gene therapy and although we have already seen some results from the stem cells, it can take several months to see the FULL results. With our last trip, she did continue to improve in the months following her treatment. So we have a lot to look forward to. I really didn’t know what to expect this time, so I’m really impressed. Hailey still has a long way to go, but she has made so much progress. They sure can do amazing things here. All of the other patients are doing much better too, so that is very encouraging. I can’t wait to see how she does after her third round of treatment! We plan to come back in 3 or 4 months.

I also really wanted to comment on Obama overturning Bush’s veto on stem cell research. I think that it’s wonderful and long overdue. It’s so sad that so many lives have been lost and so many people have had to suffer because there is no other treatment for them. Their only option is going to a foreign country and spending tens of thousands of dollars for medical treatment that should have been available in our country for years now. While this is great news, they do still have a long way to go before it can be available to everyone, because of the FDA and safety regulations. But at least we’re making some progress and one step closer.

I also think that it is very important for me to point out that the stem cells that would be used in our country are embryonic, but they are NOT from abortions. They are from donated eggs that were to be used for invitro fertilization. They have an excessive amount and these embryos would either be frozen forever or tossed out. Why not make some good out of them? I think that if more people knew that, embryonic stem cell research would not be such an issue.  I think that stem cells are the future of medicine and we will be able to do amazing things with them in the years to come. They can cure diseases, end people’s suffering and give the sick a much better quality of life. I know they have for Hailey.  In some cases, like ours, it is their only option… their only hope.

Update- 3/16/09

Good news! Hailey’s pneumonia is now completely gone. We got her test results back Thursday and the doctors gave us the all clear… thank goodness! They decided to do her last stem cell injection today (rather than tomorrow, as planned) and she got back from it about an hour ago. She is now resting comfortably on her back, with no pillow (and will be for at least the next 5 hours).

Hailey is now back to doing as good as she was before the infection. Thankfully she did not have a major setback, like I was expecting. We’re finally able to leave the room and go downstairs for massage, physical and occupational therapy. She is still trying to talk, roll over and is holding her head up better than she has in over a year. She is breathing so well now and her lungs are very clear. She is not as congested and is not chocking near as much as before. Her seizures are back down to 5-10 a day. The doctors have also noticed that her pupils are much more responsive to the light (meaning that her vision may be improving!).

Neil and Carter are doing well at home, though I know they miss us as much as we miss them. Carter’s condition is stable and we are hoping that he does not progress as quickly as Hailey. We have him on more preventative medicines, which we didn’t know about with Hailey. This will hopefully slow the progression of his disease and buy us more time, so that he can be a part of the Cornell trial. If not… we’ll always have China.

Update- 3/10/09

It is day 26 in China for Hailey and I. We are actually scheduled to leave on March 19th, 9 days from now. However, the doctors have asked us to stay for an additional week, mainly due to her infection. The head neurologists (Dr. Wu and Dr. Wang) would like more time to stabilize Hailey’s condition. They feel that with an extra week’s worth of medication, O.T. and P.T., she will likely show even more signs of improvement. While I was a little hesitant at first, of course I had to agree and do whatever they think is best for Hailey. I trust the doctors here and I know that they only want the best for her. It’s just really hard being so far away from home and we miss Neil and Carter terribly. They also said that there wouldn’t be any additional costs for the extra week, so that was very nice of them.

So, while I was getting really excited to come home and literally counting down the days, I realize that I have to do what is best for Hailey. If the doctors here believe that they can get Hailey that much better with an extra week, than we have to stay and let them try. We’ve already been here for almost four weeks and the time has really flown by. I’ll just have to start a new countdown… only 16 more days!!!

The doctors got Hailey’s blood work back today and they said that the infection is much better now and nearly gone. She still has a little congestion left over from it, but that’s about it. Now that we’re staying longer, they are going to delay her next stem cell injection. Instead of getting it this Thursday, she’ll get it next Tuesday. They’ve still been having us stay in the room all of the time, until she is completely over the pneumonia, so she has been getting all of her P.T. and O.T. in her bed. She has been doing so good the last few days. Right now they are focusing on trying to get her to roll over by herself. She’s also been trying to talk to us so much more lately and I’m so happy to hear her sweet little voice again. It’s nothing we can understand, more like faint baby talk… but I love it. I can tell she wants to talk so bad, she just can’t get it out. We’re still waiting to see that precious smile again. We try ALL the time and we can tell when she’s happy, just by her eyes and her expression, but no smile yet. The day we see that again, is the day that I know this was all worth it.