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.

Update- 3/7/09

Just wanted to give everyone a quick update on Hailey’s condition. As many of you read, Hailey developed pneumonia Wednesday. As of today, she is doing much better. The doctors are going to do more blood work on Monday to be certain the infection is gone. They have said that they are not worried and think that she will be completely better by then. She only has a little congestion now, but I can tell she is feeling a lot better.

The doctors have made us stay in our room the last few days, to prevent us from spreading the cold or getting Hailey more sick, so we’re getting a little stir crazy and could really use a walk or something. Hailey’s occupational and physical therapists have been coming to our room for her therapy the last few days and she did a lot better yesterday and today. I’m just so glad she’s feeling better, I could tell that she felt awful. I’m sure that when she is completely over the infection, she will be back on the road to recovery and will show more signs of improvement.

BTW- The link to one of our videos from China is now working properly and we will have another video up shortly.

Update 3/5/09

Hailey just got back from her 3rd stem cell injection about 10 minutes ago and she is doing pretty good. Hailey has been pretty sick the last couple of days though. Hailey and I caught a cold a couple of days ago and yesterday, her’s turned in to pneumonia. Not to worry though, the doctors said it’s not that bad and they have it under control. She woke up yesterday vomiting, had diarrhea and had a slight temperature. They started her on some really good antibiotics and said she should be better within a couple of days. I’ve been up with her the last two nights, constantly having to suction her because of all of the congestion. She is also having a lot more seizures, due to the infection. She was pretty sick again this morning and her temperature went up a little, but she is doing much better now. She is resting now and has to lay still for six hours after the injection.

Hailey (like most patients) had a lot of ups and downs during her last trip, so some of this was expected. She actually developed pneumonia last time too and was over it in just a few days. She has done much better with this trip and aside from the pnumonia, is making a lot of improvements already. The physical and occupational therapists notice every day how much stronger she is getting.

Neil and Carter are doing good at home. Carter just got over a nasty ear infection, but is now back to his happy, busy self. We still have not heard anything from Cornell about the clinical trial for him, but are told that it should start soon. Hailey and I can’t wait to get back home to see everyone. We really miss everyone, especially Neil and Carter. Our countdown has begun… 14 more days! I’m just glad that most of it is behind us and we are in the final stretch. Time has gone by pretty quickly and we’ll be home soon enough. We do ask that everyone say a special prayer for Hailey tonight and that she gets over this infection quickly. I hate that she has to go through all of this and has to suffer so much, but she has been so strong through it all. I’m so proud of her.

Video from China

Here is a link to our video blog from China.  WHAS11 – Video On Demand | WHAS11.com | News for Louisville, Kentucky

Update- 2/26/09

Hailey and I have been in China for over 2 weeks now and we are both doing well. Time is going by very quickly here and I can’t believe we’re almost halfway done. Hailey received her second of four stem cell injections today, as well as her one and only gene therapy injection. This was a big day for us and we are all very eager to see how she does with the gene therapy. Hailey is the first foreign patient to receive gene therapy in China. It turns out that there are actually more Battens cases in China, they just have a different name for it here. The other Battens children that received the gene therapy here are all doing better, depending on the stage of their disease. They expect for Hailey to do very well based on her results with the first round of stem cell treatments. I know in my heart that Hailey will do exceptionally well and we will see so many improvements… but only time will tell.

We are already noticing improvements in Hailey, such as her breathing. The doctors said her lungs have never sounded more clear and I have not had to suction her throat (to clear away the congestion) in 3 days. Hailey lays on her side the majority of the day and I have to keep pads under her mouth to collect all the drool. Before she was going through 10 pads a day and yesterday and today… only 1! She would also start wheezing really bad whenever she sat up (like in her wheelchair or car seat), but now that too is much better. She is having a few more seizures this week, but I was expecting that. The doctors here are adjusting some of her seizure meds from home and sometimes the stem cells can trigger more seizure activity for a few days after an injection. During Hailey’s first trip, her seizure activity would fluctuate very often, but by the end of the trip they had reduced them by over 90%. The doctors also tell me that her eyes are reacting to light more, like her vision is improving!!!

Now don’t get me wrong… Hailey does still have a long way to go. Although she has made remarkable progress with her seizures, breathing, weight gain, muscle control, heart and liver functions and is even trying to talk more… Hailey is still very sick. She is still bed-ridden, nearly blind and unable to care for herself in anyway. However, the doctors here have very high hopes for her and believe that much more of the damage can be reversed. I just don’t want to give anyone the wrong impression of stem cells in China. I have seen first hand what they can do for the patients here and believe me, it is amazing what they can do with stem cells. Yet it is still not the cure that we are all seeking. The gene therapy on the other hand, may just be that cure one day. It is all still so new, but our hopes are to keep our loved ones here long enough to see that cure.

I also wanted to clear something else up. It was brought to my attention that there was an article in our local newspaper recently, about a child that had received stem cells and the stem cells had actually formed a tumor. This has made many people concerned for Hailey’s safety. Trust me… as a mother I made sure that this treatment was completely safe for our daughter, before rushing into it. Although we are in a desperate situation, this was not a decision that we made in haste or took lightly. Hailey is receiving “neural” embryonic stem cells. The child that had a tumor form received embryonic stem cells. The stem cells that Hailey is getting are embryonic, but then they are grown in a lab into neural (brain) cells. The stem cells know where to go and what to do…. so the treatment here is very safe.

One thing that’s a little concerning to me, especially with our first trip, is the long list of meds they put her on here. She is already on 9 at home and here they give her 15 additional meds! With our first trip I was always like “what’s this for?, why is she on this?, what about the side effects of this one?, I don’t want her on this one,” etc. This time, I’m much more at ease with it all and I just give her whatever they give me. I don’t ask too many questions. I just really trust them so much. I’ve seen what they can do and they literally saved my daughter’s life. They obviously know what they’re doing.

So while Hailey is doing great (she is such a little trooper), I too am doing very good. The staff here is so nice and very accommodating. Most of the people here speak English fluently and if they don’t, they are very eager to learn. I have even learned learned a little Chinese along the way, they teach me new words every day! The hospital is very nice and we have everything we need. Our room is like a studio apartment and we have just made ourselves at home. It is still very different from hospitals in the U.S., but I have learned to adjust.

China itself is just so different than the U.S., it’s indescribable. Just the sheer amount of people here is unbelievable! The hospital does not provide anything (such as food, diapers and other necessities) like hospitals in the U.S., so I do have to go out to the grocery store. I have also done a little bit of sight-seeing while I’m here and gone to some of the shopping centers. It’s not much, but I figure as long as I’m here I might as well get out and see a little of China. Hospital life can be brutal. It’s just very lonely and boring, especially since there is a 13 hour time difference and I can’t talk to any of my friends and family during the day because everyone is sleeping. There is a lot of sadness and suffering here and it’s VERY easy to get depressed here. I just have too much time to think about everything and have to get out and “refresh” myself. I always feel so much better when I get back and feel like I can take it all on again. I usually just go out for a couple of hours, once a week with my translator. Her English name is Molly and I LOVE her. Most of the people here give themselves English names, to make it easier on us foreigners (thank goodness, I can’t even pronounce their real names!). Molly is my age and is so sweet and so much fun to go out with. She helps me with anything I need. I hire a caregiver for Hailey, that doesn’t speak a lick of English, but is so good with Hailey. She just sits and sings to her in Chinese the whole time and costs less than $1 an hour! Wish I could find someone like that at home!

Another very good thing is that another American family came here earlier this week. The mother has MSA and she’s here with her two daughters, from California. The hospital wasn’t expecting anymore Americans (or anyone that spoke English, for that matter) to come during our stay, so it was great news to hear that I would have some company. They are such a nice family and we’re planning a trip to the grocery store together tomorrow. Turns out, they were at our old hospital, Tiantan Puhua (where Hailey and I went last year), and they were very unhappy with the new doctors there, so they transferred to this one. Makes me feel like I made the right decision, coming to the new hospital. Hailey has all the same doctors, therapists, nurses and the treatment is even better than before.

I just realized how long this update has gotten, so sorry if I’m rambling! Guess I just have a lot to share with everyone. I’m just so thrilled that Hailey’s doing so good and we’re seeing even more improvements already. We never know what to expect and try not to get our hopes up, so we’re just so happy for her. BTW- here’s a couple of links to check out. The first one is our first video update from China (for WHAS11). I know some people have had a hard time finding it. WHAS11 – Video On Demand | WHAS11.com | News for Louisville, Kentucky. Also, here’s a link to the new hospital we’re in. It’s called Wu Stem Cells Medical Center.  Wu Stem Cells Medical Center. I’m working on getting another video to the news now, so I’ll post a link to that as soon as they get it up. I’ll have some great pictures up soon as well. Thanks to everyone, as always

Update From China- 2/19/09

Hello all. Well it is day 6 in China and Hailey and I are doing very good. They are all great with Hailey and can’t get over her blond hair and blue eyes. Hailey had her first stem cell injection today and she is doing well. They came and got her at about 10:00 am. and she was back by 10:20! She has to lay flat on her back for 6 hours, but doesn’t seem to mind. Last time we were in China she had a reaction after a couple of the injections. She would get very pail and nauseous and run a small temperature. This time there doesn’t seem to be a problem and the doctors think it is due to the antibiotic they gave her this time.

The chief doctors got the results back from Hailey’s evaluation and thankfully she is eligible for the gene therapy, I am so happy about this and really hope that it helps her even more than the stem cells alone. It turns out that Hailey is not the first Battens child to receive the gene therapy here, as we were originally told. As you can imagine, the language barrier can be quite difficult. Hailey will be the first foreigner to receive the gene therapy. Actually, there are a lot more Battens cases here in China. So I apologize for the miscommunication. The other Battens children that have received the gene therapy here are doing much better, depending on the stage of the disease. Hailey will only receive one gene therapy injection, with her 2nd stem cell treatment.

Hailey also started physical and occupational therapy Monday, where she receives 45 minutes of each 5 or 6 days a week. She also gets 20 minutes of Traditional Chinese Massage 5 days a week, where she gets a full body massage (I’m so jealous!). The therapy is very rigorous and I think it is very good for her. At home I would exercise her for an hour a day, 7 days a week and it has really made her so much stronger. They have also started her on several Traditional Chinese Medicines and are reducing some of her seizure medications from home. For now she is doing about the same, but hopefully we will start seeing improvements soon. Hailey did so well with the last round of treatments (the doctors literally saved her life), that I know she will do even better this time.

We are finally adjusted to the 13 hour time difference and are really starting to settle in here, everyone is so accommodating. The hospital is nice, but not like the hospitals in the U.S. The food is decent, but tastes nothing like Chinese food at home! I got to go out briefly yesterday to the bank and store. It is not as crowded in this part of Beijing and the air quality is much better. It is winter here too, so it is pretty cold. They just had their first snow, but it wasn’t much. Hopefully it will warm up soon and I will be able to take Hailey out for walks. They do keep us very busy here, with all the therapy and doctor visits (which is good… helps to pass the time) and in our free time we are reading lots of books, listening to her music and singing songs. I’m terribly home sick and miss Carter and Neil so much, but I truly enjoy the quality time I get to spend here with Hailey.

Don’t forget to check www.whas11.com for more video updates!

First Update From China 2/13/09

Ni Hao! Hailey and I made it to China yesterday around 6:30 pm. We had a good, but very long, flight and Hailey did very well. The plane ride was about 13 hours and Hailey didn’t sleep very much, which means I didn’t get much sleep either. We are pretty tired and jet lagged. The hospital was having problems with the internet when we first got here, but I am glad that they got it fixed. I don’t know what I would do here without my computer! We are all unpacked and getting settled in. The new hospital is very nice and opened just one month ago. We will be staying for 5 weeks. Hailey will receive 4 stem cell injections and gene therapy via lumbar puncture. She will be the first Battens patient to receive gene therapy here, so we have a lot of people watching and wondering how she will do, especially other Battens families. If anyone has more questions about the treatment here, please do not hesitate to ask. I am always very happy to help. We are all very eager to see how she does.

The head neurologists and doctors have already been in to see Hailey and they are very happy to see her doing so much better. The first thing they noticed was how much bigger she is. She has gained 21 pounds since our last trip 6 months ago! They also noticed the dramatic decrease in her seizures and she is no longer having any involuntary movements, such as sticking her tongue in and out constantly. However, they did say that her heart and lungs are a little weaker than before. They think it is due to the weight gain and maybe her heart and lungs did not grow enough to keep up. They said not to worry, that they could treat it with medication and of course the stem cells will help with that. I trust the doctors, they literally saved her life last time. Before the first trip, the doctors at home gave her only months to live and advised me not to take her to China because she would die there. I’m so glad I followed my heart and took her. We are thrilled to see her doing so much better and we know she will be even better after this round of treatments. The doctors have already started her on several new medications and she will start physical and occupational therapy and recieve her first stem cell injection next week.

I am doing well, though I did have a rough time on the plane. I think it finally all caught up with me and I just got to thinking about everything, getting very emotional. I am much better now and know that I am doing the right thing for our daughter. I miss Neil and Carter already, but I do get to see them on the computer everyday thanks to Skype. One bad thing about the hospital is that there is only one other English speaking family here, from Iran, and they leave in a week. So I will be a little lonely, but I have plenty of people to email.

We did get some bad news from our pediatrition at home. Unfortunately Hailey’s pediatrician said she is  starting to get scoliosis, which is part of the disease. She said it is not very bad, but she will need to be fitted for a brace. We also learned that Carter is very small for his age. They base this on a percentage scale. 50% is average and his height is in the 5th percentile and his weight is in the 25th percentile. So she wants to start him on growth hormones. He has always been small and a very picky eater, so hopefully this will help. Other than that, Carter is doing well. Still no word from Cornell and as I’ve said before, if we don’t hear anything by this summer he will go to China with us on Hailey’s 3rd trip. He is starting to regress, so we are hoping he can hang on long enough.

We are still trying to raise funds for future trips and could really use some help in spreading the word. When Hailey and I return home, it’s back to fundraising. I have a lot of great ideas for benefits and am looking forward to getting started again.

I will be updating very often while we are here. Also, one of our local news stations, WHAS11, gave me a camera, like last time, to take video while we are here. You can see that video at www.whas11.com under Hailey’s blog. Thank you all so much for your continued support and please remember to keep us in your prayers. God bless

We Have Arrived

Miranda called me this morning at 7:00 saying she and Hailey had arrived safely in china and they are getting settled into the hospital.  She is having internet connection problems and will be updating the website as soon as she can.

Info about new hospital

I just wanted to share with everyone a little bit about the new hospital Hailey and I will be going to. It looks like a very nice facility and we are very excited about going. Just 2 more weeks! I really hope and pray that Hailey comes back even better than before.  We’ve got everything ready for the trip (meds, formula, supplies, ect.), we just have to pack. We are becoming increasingly concerned about Carter, as he is starting to show signs of regression. He is having trouble with his balance and falling a lot more and is also starting to lose some of his speech. We just hope he can hang on long enough for the Cornell trial, which we are hoping will start in just a few months. If he regresses anymore, we will go ahead and take him to China asap. We hate just waiting and seeing. Please remember to keep our family in your prayers as Hailey and I make the long trip to China and for Carter to remain stable until we are able to get him treatment. Thank you all so much.

Here are the links to the hospital Hailey and I will be going to, if anyone wants to check it out. The name of the new hospital is Wu Stem Cells Medical Center and they have two websites which are:

Wu Stem Cells Medical Center

Like Cell Research Center

UPDATE 1/14/09

First I would like to apologize to all of Hailey and Carter’s “fans”, for not updating sooner. Like so many, the holidays have been very time consuming and stressful  for us. We did have a wonderful Christmas this year. It was quite emotionally draining on Neil and I this year because this was our first year knowing of our children’s disease. We tried not to dwell on things too much and just focused on having a great time with our kids and making lots of memories that we will treasure forever. We had so many generous people donate gifts to Hailey and Carter this year, which was a true blessing for us. Santa brought more gifts this year than all the previous Christmases combined! We’re so happy for them and no one deserves it more than them. A huge thank you to everyone that donated to Hailey and Carter for Christmas. I can’t tell you how much that means to our family, we feel so blessed to be surrounded by so many caring, generous people. Although the holidays have been very difficult on us all, it truly warms our heart knowing that so many people have reached out to us. It really relieves so much of our burden. I pray that everyone else had a wonderful Christmas as well and may God bless you all in the new year.

Hailey and Carter are doing very well. Carter was having a few more seizures a few weeks ago, so we had his blood levels checked and his medicine levels were low. He probably gained a few pounds, so we went up on his seizure med and it has really helped. Thankfully,  he has not had anymore since.  Hailey is still doing great. No more improvements to speak of, but she is stable and that is great. Before we went to China she was progressing so quickly and it  is so nice to see that so much of that damage has been reversed (about 8 months) and she is stable now.

I have just began planning Hailey’s second trip to China for February 12th. We’ve already ordered plane tickets, sent out for visas and are working on getting all of her meds and supplies ready. It is a lot of work preparing for a trip like this and requires a lot of tedious planning. This time I am doing everything I can to avoid another mishap, like last time when we were stuck in Canada, had to come back home and start all over. We are flying with United again and they are familiar with our story and are willing to work with us again. So I do not anticipate any problems this time. Plus Hailey is in much better condition this time, I think everything will go very smoothly.

I am really looking forward to Hailey’s next trip and think she will do even better with her next round of stem cell therapy. Unfortunately we will be going to a different hospital this time. There has been a lot of confusion there and apparently all of the doctors left our old hospital to start a new hospital. After careful consideration, we have decided to take Hailey to the new hospital. It is still in Beijing, but very far from the old hospital. I was pretty confident about going back this time, just because I know my way around pretty good. Now I feel like I have to start from scratch and learn my way around all over again. I’m also worried that since it is such a new hospital, not a lot of English speaking patients will know about it and I may be the only English speaking person there. Oh well, I’m not there to make friends and I’m sure I’ll have plenty to do.  While we are there it is ALL about Hailey. I love the quality time I get to spend with her there, with no interruptions.

My main reason for wanting to go to the new hospital is because Hailey will have all of the same docs and therapists. They are familiar with her case and that really puts me at ease. The new hospital is much nicer too! It is brand new, they have a lot of beautiful land and it is a bit outside of the city, so there won’t be so much pollution. I am also very excited that the new hospital is now offering gene therapy. So with Hailey’s next trip, she will still receive stem cells, but she will also get  gene therapy (which is what they are working on at Cornell). The doctors there are very optimistic about the gene therapy and think that Hailey will do very well with it. The new gene will make up for her defective gene and start producing the enzymes that her brain is lacking and start to break up some of the brain cell waste that is poisoning her brain. We are very hopeful for this treatment and pray that we see even more improvements. Hailey will be the first Battens child to receive the gene therapy there. So while I am a bit nervous, I feel like it is a risk that we have to take. We know the risks of her disease and what will happen, so we just feel like we owe it to her to try it. While we saw major benefits with the stem cells alone, we want something more this time around. We feel that stem cells are basically just buying us time and we want something that could possibly cure her from this horrible disease. We can’t wait to see what happens.

As for Carter’s treatment, there is still no word from Cornell. We wrote over 80 letters to different charities, millionaires and billionaires to try to get it funded, but we still have not heard anything. I spoke to the doctor’s assistant, that heads up the trial in N.Y., and they still have no idea when the trial will start. It could be 6 months, a year, two years. They just have no idea. While we are very disappointed with this news, we do have a plan. We have decided that if we do not hear anything from Cornell by this summer, than Carter will go to China with Hailey on her third trip this summer. With all they have done for Hailey, we are confident that they will be able to help Carter as well. There he will receive stem cell treatment and gene therapy as well. Of course we would rather him get treatment her in the U.S., but we will do whatever we have to. We know that the Lord will lead us in the right direction.

For now I will be hard at work preparing for our trip, but I will definitely keep everyone updated on Hailey’s progress, once we’re in China. Please continue to pray for Hailey and Carter. For a safe trip and for the miracle that we are so desperately seeking. Thank you all for following our story and God bless you all.

BTW- We just had Christmas pictures taken of the kids and I can’t wait to share them with everyone. I will have them posted as soon as we get them.  A wonderful lady with ksphotography came out to our home (which made it so much easier on us) and took some amazing pictures of all of us.