Garrett's Fight For Site - Our China Blog

Our China Blog

Thank you for your support and prayers!

6/3/2008: We have our plane tickets! We will be flying out June 29th and will arrive in Qingdao on July 1st. We will be back home on the 25th. It is becoming more and more real! We are very excited and nervous. What an amazing experience! We will be updating our blog information as often as possible. I am sure we will be busy, but it is important that we keep in touch! Stay tuned for more details!!!

6/27/08: I can't believe we are leaving in just two days! I have a mix of emotions, but mostly excited to get this started and do this for Garrett.
Tom and I would like to thank everyone for all their support, prayers, and donations. With all of your support, this wonderful chance for our son is more a reality than a dream. We are so grateful to all of you! We started out worrying how we were going to make this happen, willing to do anything to make it possible, but so many of you volunteered to take on the challenge to help us. We are completely overwhelmed with the generosity of our community and surrounding areas! It has been an amazing testimony of love that we have witnessed. Garrett is so fortunate to have so many rooting for him. We cannot wait until the day that he will be able to look back at all of this and see with his own eyes, the kindness and generosity that was given to him and his family. We can never thank you enough!
Be sure to keep checking in on our blog. We are going to try to keep up as many updates as possible! Thank you again!

7/01/08: Where do I start?! We have been traveling for two days now and we are still not in China! We will not get there until tomorrow now! Delta caused us to miss our flight in LA which we could have made but Korean Air closed their ticket counters and everyone else was not interested in helping. We ended up having to spend the night there and fly into Honolulu the next day. That was pretty cool, but we had a short layover and it was spent trying to convince Korean air that Delta was suppose to have made our reservations. Now we are sitting in a very small hotel room in Korea. We will not fly into Qingdao until tomorrow morning.
We are stressed to the max and need a good night's rest and a decent meal would be great. The best thing is that Garrett is being a trooper through the whole thing! He got a little frustrated this morning at LAX but Keith and I were the same way! He liked the flying and is doing great. Thank goodness!
We will be updating tomorrow hopefully from Qingdao! We just ask that everyone prays for us and our sanity!
Thanks to all!

7/2/08: We finally made it......our luggage did not! Delta never sent it from L.A. once they rerouted our flights. They claim it will take up to two days but thankfully I have a persistent brother who will not wait that long! Hopefully it will get here soon or Garrett will starve. Thankfully, there is a boy here, Bradley, who is from Virginia and likes pop tarts. They are loaning us a box until ours get here.
Everyone is super nice. We have met several children and they have all taken an interest in Garrett. He, on the other hand, prefers to sit with his magna doodle for now and keep to himself. Can't say that I blame him. We are trying to adjust but it is not easy. It will work itself out though I am sure. They order lunch for the families and then bring it back to us. We thought we ordered but somehow missed it. Now we have no food until tonight! Maybe this is our answer to losing weight!
The town is really cool and there are a lot of neat buildings around us. We are somewhat anxious to go out and see the town. The hospital is nice and they are really accommodating to the kids. It is hot though. They have air conditioning but it is not as cold as ours. It is also really humid.
I must go now to hunt some fluids and food! We should have our schedule by the end of the day and we will let everyone know what is going on. We thank all of you who have prayed for us! It is definitely needed! 'Till tomorrow.......

7/4/08: Happy 4th of July! I hope everyone enjoys the holiday and fireworks! Garrett is having his first treatment today at 3:20. It will be a spinal and I am very nervous. The good news is that the Doctor came in today to talk to us about Garrett's diabetes insipidus. That is water diabetes. Garrett's is very mild. He has to take medication or he will drink non stop and pee constantly. He will not retain any of the fluid. The doctor told us that he treated a 10 year old girl with ONH and DI and after her treatment, her DI was cured and she will no longer have to take her medication! That would be awesome. The less medicine Garrett has to take the better.

Last night I got to go out to dinner with a couple who left this morning and two other mothers. It was very interesting but a super nice place. I am struggling more with the food than Garrett is. I am cool with eating pizza everyday! The couple who left this morning was here with their son who is autistic. He has already had some improvements! All of the parents are very nice and it is great to have someone to talk to who understands what we go through.

I am a little nervous about the treatment today. It is hard to put your child in someone's hands that you struggle to communicate with. They all seem to be very interested in the children and know what they are doing. They just do not share everything. They will have a 5 minute conversation among themselves and then turn to us with only a few words.

I must go now. I will update on Garrett after his treatment. He must remain flat for 6 hours without raising his head so it will be a long afternoon!

Until later.......

7/5/08: Well, we survived his first treatment! It was a rough and emotional day. They came to put his IV in and had a hard time finding one. Everyone knows how they hurt. They ended up putting it in his foot. We had to lay on him so they could get it done. I knew then there is no way he could do the spinal without completely being out with general anesthesia. I had our translator tell the doctor my concerns and request that it be done that way. The doctor asked how old Garrett was and I guess he assumed because he was nine that he may cooperate. They said they would give him a valium beforehand. No sooner than they took him back they brought him back out. They said he moved too much and he would have to go to the OR for the general anesthesia. No crap! I know my son better than anyone and by this time I was totally ticked off! They didn't even give him the Valium before they tried. Another parent was irate because they were laughing because his son was crying. I don't think they thought it was funny, they just deal with things differently here. I emailed Kirshner (our american contact and VP of the company) and she is going to make sure they send him to the OR every time. She is here now and is a great support for the parents.
They took Garrett down at 6:15 for his treatment. They put the medicene in his IV and within less than a minute he was out. He was only back there for 10 minutes and they were done. We went back to our room for recovery and within 30 minutes he was alert and talking. He was a little drunk and provided some entertainment for Keith and I! His first question was, "did they fix my eyes?"! How sweet! The nurses were great with him and checked on him quite a lot without being aggravating. He wanted to get up often but since it was close to bedtime, we convinced him to go on to sleep. He only woke up once and then ended up sleeping past 7 this morning! That was a blessing. He woke up in a bad mood. His is asleep now and will hopefully rest until after lunch. He has acupuncture at 2 then we hope to go to the market!
I am anxious to start looking for some result. One of the boys here had his first treatment on the day we got here. His eyes roamed quite a bit like Garrett's. They seem to have slowed down. We are all being cautiously optimistic!
The families here had a cook out last night for the 4th of July. We didn't attend because we needed to be with Garrett. They all fixed us each a plate and saved it for us! The people here are very nice and compassionate. That makes it a little easier to be here!
I must go now. Keith has gone out with one of the dads and Garrett is resting. I think I will take advantage of the quiet time!

Until next time.....

7/6/08: Today was our free day. Garrett did not have any visits from the doctors, acupuncture, or physical therapy. We decided we had to get out of our room for a while and went downtown to the Jimo Mart. That turned out to be a huge peddler's mall that is 4 stories! I have never seen so much stuff. The people beg you to come into their booths and look at their things. You will ask them a price for something and they just seem to pull one out of thin air. You really have to bargain with them but you can get a great deal. My dad would love it! I got a few gifts and souvenirs and eyed some pieces that I will have to go back and get. Garrett, however, hated it. It was hot and very crowded. He does not like crowds to begin with and this was his worst nightmare! We went down with a group, but after an hour we had to leave. That was enough for today anyway. Next time, we will leave Garrett with some friends we have made here and perhaps go by ourselves. We will see.
I did get to meet Kirshner yesterday. She came in while Keith was out. She is very nice. She is staying here for the next ten days and is ensuring that all of the parents concerns are taken care of. It is a relief to have her here. Garrett's next treatment will be Wednesday. I am already dreading it, but since she is here, I know they will do what we want them to. I am watching hard for any signs of improvement, but trying to be careful and not get my hopes up too high. Any sign would be welcomed though.
For some reason, our minds and bodies have crashed today. We came back from our outing and was just wore out. It is 8:00 at night here and Keith and Garrett are in bed and I am on my way. I have a feeling we will be up at the crack of dawn which is 4 a.m. here!
Only 19 more days left! We cannot wait until time to go home. I hate to wish our life away, but this is just too far and too long to be away from Tom, Whitlee, and home. Words cannot describe how much we miss them! I cannot seem to enjoy seeing the country because of it. Hopefullly it will get better soon!

Until next time.....

7/8/08: Well, we have had some exciting news today! When we first got here, the docotors did the "counting finger" test with Garrett to get some idea about how much he could see. He could count their fingers at about 6 inches out from his nose. This morning he can see the fingers at almost 3 feet away! We are still being cautious and not getting our hopes up too high until we see our opthamologist at home, but how could we not excited about that!
He is now having acupuncture along with uncle Keith. Keith decided to have it done as well since Garrett hates it so much. It does comfort him some to be sharing that experience with Keith. It also helps Keith's back as well. It is not for me and I certainly am not volunteering for it. I will hold Garrett's hand all he wants!!
Garrett's next treatment is tomorrow and we will not find out what time until late this afternoon. He is going straight for General Anesthesia this time so it should be better. Thank goodness. I would hate to pull a Kung Fu Panda on them if they shouldn't listen to me again! ha!
We have found a great restaurant close by that is at a five star hotel. It is wonderful! They have some american food along with some great chinese and some things I can't even begin to imagine what they are. It has comfort food though! Yay!
It is now naptime so I will leave for now! I will update as soon as we know what time our treatment time is.
Thank you again to everyone who who is checking in on us and sending us emails. We really appreciate it and can feel everyone's prayers!

7/9/08: We made it through our second, and I guess you could say third treatment today! They ended up doing his IV treatment today along with the spinal. I was concerned about this at first but then realized that it means one less time they will be sticking him with another IV needle. I am looking at it as we knocked out two birds with one stone. I just wish this meant we would get to come home a couple of days earlier. The spinals are done 4 days apart (not including weekends) so I am guessing we will have one the middle of next week and early the next. That will give him 3 days before flying home so they can make sure everything is okay.
He is doing very well. He has not slept so far during his 6 hour. laying flat period. He is handling it very well. He will ask every once in a while if he can get up. He is finally allowed to eat and that is keeping him happy. I am hoping this means he will sleep good tonight. It is 9:00 at night here and he has until 10 before he can lift his head. I think we can make it another hour. He has been very entertaining since he came out of anesthesia. He seems to think he is a cat now and he wakes up meowing! Today he meowed a lot when coming out of it, but he also barked like a dog, mooed like a cow, and made the weed eater noise! I think he is having an identity crisis today!
We love his physical therapist, Jason. Jason also does his acupuncture. He is the sweetest little thing. Garrett asked him today if he would come home with him. Garrett graciously volunteered our friends, Jason and Stephanie's house for him to stay at! I am sure they wouldn't mind!
Garrett is also begging to find a washing machine to do laundry! I believe that the laundry room will be the first place he will go when we get home!
I have been watching him closely in our room to see if I can tell any difference in his vision. I can tell somewhat, but nothing drastic. That is until time to take him to his next treatment. He was watching a movie on our computer and I just happened to notice that he was sitting up to watch it at about 10 to 12 inches instead of sitting right up on the screen! I could only sit and stare. I can't explain what that simple change meant to me. I grabbed our video camera and decided that would be a great way to see a difference. I can compare from one day to the next to see how far he can sit back from that screen.
We are getting more anxious every day to come home. I am looking forward though to get our and do some shopping. We are going out Saturday with some other families to Polar World, which is like sea world, and shop. I hope Garrett will hold up for the trip. I believe I have mentioned before about his dislikeness of shopping! Just like his daddy!
I believe I will see if I can convince him to sleep some now, but I will update again soon. Please keep up the prayers. We are witnessing, everyday, the power of prayer. It may not always be through us, but other families as well! Thank you to all for helping us get here. Without all of you, this would not be possible!

Until next time......

7/10/08: Not much to report today. Garrett did not sleep well last night and was up at 5 this morning. He has had a headache and a slight back ache. He and I took a three hour nap after lunch and we are feeling a little better. Right now, he and his new friend Braden are trying to belch the alphabet. Oh the things we learn!! We have stayed in all day but are planning to go out tomorrow with Weston's family. Weston is not much on shopping either so we should be a good match. We are looking forward to getting out and getting some air, even though the air is mostly smog!
We hope everyone has enjoyed our pictures. There were so many to chose from. We haven't had a chance to eat the KFC yet, but we hear it is not exactly like home. Weston loves mashed potatoes so his mom went to get him some. She said they were "ricey"! We did get a care package from my friend Elaine today that had some home food in it. We were so excited! Thanks Elaine! It felt like we had a direct connect to home!
I do have one correction from yesterday. Kirshner came in today to answer some questions we had. She told us that we didn't have two treatments yesterday. The IV bag is normal with spinals. That is a perfect example how the language barrier can be a problem. We still have 3 more to go instead of 2.
Hopefully we will have more to write about tomorrow. Thanks again to everyone for the emails, thoughts, and prayers!

7/12/08: Ni How! (pronounced knee how) That means hello in Chinese! We are trying to learn some of the language, but so far that is only one two we can pronounce!
Today, I was sitting out in the common area where the parents and patients gather for "gab sessions" and was sitting where I could see in our room. From there I can see Garrett sitting at the lap top watching his movies. His is still sitting back from the screen like he was the other day. The lap top's screen saver comes on every so often during the movies and Garrett has learned to move the mouse to make it go back to normal. Today while I was watching him I noticed he kept leaning over to get close to the monitor again to see. I thought it was odd because he had not done that for a few days now. I got up to come in and check on him and asked him what he was doing so close. He said "watch this thing move!" I got a closer look to see what he was talking about and saw that he was looking at the arrow that the mouse moves! That is pretty small. He just discovered it! He had a ball whirling the mouse around and watching that arrow fly across the screen! Some of the other kids are having some pretty cool milestones as well! I feel so blessed to be able to witness all of these small miralces! George Strait has song called "I saw God today". I have never been able to listen to that song without getting emotional. Now, more so than ever! It is so true. Next time you hear it, think about us and what we are witnessing. It may may make you think about things so differently!
Tomorrow is our big day out to the sea world and McDonalds! Yay! Everyone here says the McD's tastes like home! I cannot wait for the french fries!
Today I got to go downtown to a dress shop with some friends here and they took me to Wal Mart. Yes, they have Wal Mart here. But, it is not like ours! I am going to get some pictures posted of it and you will see why. I will never talk bad about our Wal Mart again. As a matter of fact, I may kiss the floor when I go in!
Garrett has been in the best mood the last few days. He is coming out of his shell a little bit and playing more with the other kids. He does prefer for them to come to his room though. That is okay! He has two treatments this coming week. One will be Monday and the other will be Friday. It will be a hard week for him but that will leave only one more treatment and it is the easy one. It will be the IV and it will be the week we come home. They tell us those are a breeze and by having it last will give him time to feel better before we get on the plane for that long ride home. I feel like the days are dragging but when I look at the calendar, I can't believe we have already been here close to two weeks. We are getting more brave about going out and that is helping to pass the remaining days. Still, I can't wait to give my husband and daughter a hug. They will have to pry me off of them!
Thank you to everyone for sending emails. They are very encouraging and helps to lift our spirits on the long days!

7/13/08: Today has been a very busy day. We went to the Jusco mall where we finally got to eat at McDonalds! That was a nice treat! The food was just like at home but the crowd was unreal. Imagine a small restaurant in a mall and cram if full with 300 people. Keith was on edge by the time we got out. I ate so fast and so much, but I don't think I actually got to taste it! After that stop we went to Polar World. It is like the aquarium we have in Newport, KY, but they have polar bears, a dolphin show, and some whales. Garrett really enjoyed it. I would use the video camera during the dolphin show to zoom in on the action and he watched through that. Once we left there, we went to Baskin Robbins where Garrett, of course, ate his cereal. At least it wasn't a pop tart! The ice cream was good but they serve popcorn with it! I have yet to figure that out. They serve pickles with the pizza here too! They're side items are definitely strange!
The best part of my day was when we left Baskin Robbins, Garrett was exhausted, but he looked up at me and told me "Good Job, Mom! I am lucky!" He told me several times that he was lucky! I have the sweetest boy, I swear!
We came back to our room to rest then went out to the RT Mart to get some things. Garrett now loves the RT Mart. I haven't quite figured out why, but I think it is because we take an electric rickshaw (?) back instead of a taxi. That is a motorcycle with a back to it that has two small benches for riders. It has a canopy on it and it is a blast to ride here at night. Any other time, I don't think I would risk my life. The driving here is insane!
We have our next treatment tomorrow at 10:00 a.m. I will update as soon as I can afterwards. I hope he rests better this time and will hopefully take a nap. It makes his time go by so much faster and easier for all of us, especially him.
It is night time here for us, so I will say goodnight! I will check back tomorrow!

7/14/08: One more spinal done! Garrett is doing well and has two more hours before he can get up. He is now able to eat and that helps. He is having a harder and harder time with the six hours after the treatments. He did take a nap for about an hour today. It is very quiet at the hospital and the time seems to have stopped. I think I prefer for him to have his treatments later in the day. Oh well, we don't get to choose the time so we will make the best of it.
Today has been hard for me for some reason. I am very homesick and everything about this place is making me mad. I am trying not to let it show so Garrett doesn't pick up on it. Thank God Keith is here. He is so good with Garrett and good for me. I don't know what I would have done if I had come alone.
Hopefully we will see some more results soon. That always ensures us of why we are here. Macie, another ONH child who is 14, told her mom the yesterday that she could see the green in her mom's eyes! That is just amazing. I think it will take a while before we know exactly how much it has helped Garrett. I am sure he doesn't understand what he sees, but he has sure surprised me before! He is so amazing!
I will update more soon! Love to all!

7/16/08: Today has been a little more enjoyable! Garrett did not have a good evening after his treatment. When he finally got to get up, he had a horrible headache. He tried to be a trooper and play with his friends but he just couldn't do it. He went to bed about 8:00. He woke up a couple of times during the night with stomach cramping and the headache was back. He ended up sleeping until 8:45 that morning. That is late for him! He was okay when he got up but he slowly went downhill. We stayed in all day up until around 4. Finally, we had to get out. We decided to grab a wheelchair and walk down to a jade store that is close by. He did good during the walk but ended up a disaster at the store. We came back early and went straight to the room and shut the door.
He slept good last night and woke up 100% better this morning. Keith and Macie's mom fixed breakfast for everyone this morning. It was delicious! They had bacon, fried potatoes, pancakes and fruit. Yummy!
I went out sight seeing today at the market and Keith and Garrett lounged around here. We are all tired today for some reason. Well, Garrett is not so much! He is keeping us entertained! He and I walked downstairs to give Keith some quiet time. We were standing on the elevator and a nurse got on carrying a small basket. The instant she got on Garrett asked her if she was carrying her laundry basket. I can't believe he saw it well enough to know what it was. Of course, she had no idea what he just asked her so she just giggled!
The days are long but the month is flying by! I cannot wait to mark today off our calendar because that means we are in the single digits for the amount of time before we get home! We are luckier than most here. We are actually here only a little over 3 weeks. Most families here are here for 4 to 5. Thank goodness we are on the short stick for that one!
We are getting out tomorrow and then Garrett has his last spinal Friday. I probably won't update until then. We will only have our IV treatment left then we come home!!!

Until next time.....

7/18/08: Garrett just finished his last spinal treatment. Shoo! I am so relieved that part is over. Now once we get the next 6 hours over, we are in the home stretch. The IV treatment should be Monday, Wednesday at the latest. Those are simple and will not be hard on him at all.
There are now 7 ONH kids here. It is so nice to have the other families to talk to. They have us all on the same floor so the parents can support each other and the kids have one another to lean on. All the kids are finding great friends here. None of them have met other kids who share such an important factor. It is so cool to watch them all interact with each other. We have both made good friends and cannot wait to continue our friendships after we leave here!
I do have one favor to ask of you as our family, friends, and those who are supporting us. There are some emails going around about all of us as parents who are bringing their children here, that are negative and hurtful. They are judging us for what we are "putting our children through". This infuriates me, knowing that more than likely, none of these people have a child or a family member with a disability and has never had to walk in our shoes. We do what we feel is right for our children. We did not make the decision lightly as whether or not we should come here and do this. There were months of research and a huge amount of questions. The only person we will have to answer to is God and I feel he is the one who brought us here. If any of you should encounter a negative response about the stem cell treatments, please just ask that person if they have had to ever walk in similar shoes. These treatments are giving so many parents and families hope for a better future for their loved ones. No one should try to take that away!
I will update more later after Garrett's 6 hours are over. Hopefully we will have an easier recovery this time and will get a good night's sleep. He has been such a trooper! He is definitely the strong one of our family!

Love to all.....

7/19/08: We are officially less than a week from coming home! We have all done the happy dance this morning! We are so excited about coming home. Garrett has even started asking when we can get on the plane again. He asks everyone we talk to from home if he can come to their house. Obviously, he is as ready as Keith and I!
Garrett did very well last night. He slept for a couple of hours prior to time to get up from his treatment so that passed his time quicker. He then called Nana and was so goofy! I think he must have still been dopey, but he sure made us all laugh. He slept very good last night. He woke up late but just like last time, he had the belly ache and a headache. He did his physical therapy and acupuncture and was sick of everything and everyone afterwards. Keith went out with some friends so Garrett and I are taking in some quiet "chill time"! Hopefully I can convince him a nap would be beneficial for him as well as myself! His IV treatment will be Wednesday. Like I said before, that should be easy!
One of the mom's found a place to eat here that has steak AND BAKED POTATOES! I almost peed my pants at the thought of a baked potato and steak! Hopefully we will be able to go
there tonight or tomorrow.
Not much else to report for today. We will be back to post again soon!

7/21/08: Sorry it has been a while since I have posted, but I have been having trouble getting in the site to do it. Thanks to my buddy, Brock, we are back in contact!
Garrett is doing GREAT! He is tolerating mommy and uncle Keith’s shopping wonderfully! Today we went downtown by ourselves and walked around all day. He never complained once! On the way back, he had his forehead glued to the window. I thought for sure he was falling asleep. I asked him what he was doing and he said, “Oh, I am just looking out the window!” I don’t know if he was seeing much, but I loved to hear that statement.
Last night we went to the restaurant I mentioned before to eat. It was pretty good. I didn’t get my darn baked potato though. That is okay though. I got fried potatoes with bacon in them instead! At least I think it was bacon! The hotel it was in was absolutely beautiful! Since we haven’t had hot water since Friday, I was tempted just to stay there! They had a ton of security there. You couldn’t even pull into the lot without the guards checking your car. Once you got inside, all of your belongings had to be scanned and you had to walk through a metal detector. We finally figured out that the Olympic sailing teams were staying there! We saw the Italian team eating while we were there. I must say that was pretty cool! The hotel is only about 3 blocks from where the event is taking place. We plan on going down tomorrow to see the beach and the boats. We are pretty excited about that! I just hope the smog fog will be minimal so we can see them on the water!
The town is completely lit up at night. It reminds me of pictures of Time Square I have seen. I have to get back down there one night to get some video and pictures. Every building has something Olympic themed on it. It is so cool and really great for all of our kids here who cannot see well! It was raining last night so they didn’t get to see a whole lot, but we will definitely make one last trip down. I am still seeing small improvements with Garrett. Not just sight, but his overall being. He seems to be talking better and he even wrote out his first sentence all on his own! Yes, Mrs. Jones, that is right! He wrote is by himself! He wrote “Brad is the cats meow!” (Brad is Braden’s dad and is not helping us break the meowing G likes to do!) His writing has improved so much. He is writing smaller and clearer! He tolerates more as well.
Even if Garrett didn’t show a lot of improvement vision wise, (which I pray he does!) it so worth seeing him being with the other children who understand him. That is something he or I have ever experienced. All of the kids at our school love Garrett and he loves them as well, but it is something pretty incredible to have friends who share such an important part of who you are! It has given him more confidence to get out and play. I too, have made some incredible friends.
Garrett’s next treatment is Wednesday and I probably won’t post anything until then. Please keep up the prayers! I can feel them working!

God Bless!

7/23/08: Mission accomplished! We have completed the last of our five treatments! Thank heavens! Garrett did wonderful today. It is a shame that all the treatments can't be through IV. From start to finish it was no more than 45 minutes. The treatment includes 2 small bags of fluids (one before and one after) and the small bag of stem cells. Afterwards, Garrett was off and running. He is now crashing and ready for bed. We celebrated two birthdays with one of the patients, Glenn, and one of the patients moms. Garrett was so excited to get to sing happy birthday and help blow out candles. He was a little disappointed that no one sang to him so he ran into our room, drew a picture of a birthday cake, a yelled for me to come in and sing to him. Of course, I did! He has me!
Keith and I started packing tonight and have exhausted ourselves. I am so tempted just to leave with only the clothes on my back! I hate packing!
It has rained hard here all day and we have not been able to get out to do much. It has been a long day and tomorrow sounds like it is going to be more of the same. At least we are at the end of our stay!
I will be posting our last post from China tomorrow!

7/24/08: Our final post from China! I cannot explain how relieved we are! Even Garrett is getting excited and cannot wait!
I have mixed emotions about our adventure. I will not say that I regret it nor will I say that I would do it again. Time will only tell.
Today has been horrific for a family who just had their first spinal yesterday. He is 6 and has SOD. He is so sweet and quiet little fellow. I just love him. His name is Glen and he is from Missouri. He did okay yesterday after his treatment but woke up this morning with a headache as most of the kids do. Within less than an hour, his headache was worse. His mom had already given him motrin. He finally was falling asleep after crying. His mom noticed that his heart was beating really fast. All of a sudden he woke up vomiting and screaming. He was even hitting himself and his mom. His mom finally got a doctor to understand that she needed help. This is one of those moments where the language barrier becomes the most frustrating part. His stats were horrible. The doctors finally determined that they had not measured the amount of stem cells that were going in and that had caused some pressure and fluid build up. Luckily one of the patient's dad is a doctor and really helped the family out. Glen is now doing better but I believe they are now going home without finishing the treatments. I cannot say that I blame them. After watching what they went through today, I believe I would come home even if Garrett had not finished his treatments.
I cannot explain all the emotions that are floating through here today. The families have really rallied together to help each other and have even talked to the president of Beike to let him know the circumstances we are all in. Garrett has made some improvements and I am so thankful. Only time will tell if our trip was worth it. It is in God's hands and I will trust him whole heartedly to take care of my baby. I cannot believe that he has brought this far just to leave us disappointed. I have faith in him and will continue to pray that all of this is going to give Garrett the hope and chance of a better life. So far we have been very blessed that Garrett has not had many complications. He has not felt well today and his stomach has bothered him quite a bit, but he has bounced back and is okay now. I am thankful that we have been so fortunate.
On a happier note......Macie, from Colorado and 14, has seen a huge improvement in her vision! She was barely reading the first two lines of the eye chart (the first one being the huge E) and now she is reading the third line as well and some of the fourth! She was so excited I thought she was going to jump out of her skin! She even said the she was starting to see straight ahead which is phenomenal! I am so excited for her! She is big into horses. Keith and I cannot get enough of her. We so want to bring her home with us, so she has said she will come see us soon!
Another great note of news.....Weston loves squishy balls. I found one for him that lights up and flashes when you hit it. Remember, he is completely blind. His mom and he were in the bathroom playing with it the other day. He told his mom that he "sees the light!" He has told Christina that before so she decided to ask him what it doing. He told her with his hands that is was bouncing!!! So much good news! We just have to keep telling ourselves that it is working!
I am going to go for now! We are almost completely packed and are ready for bed. All I can think of is seeing Tom's and Whitlee's faces in person so I doubt I will sleep much. As for Garrett, he is already snoring!
I will continue to write updates as Garrett progresses! Keep checking in!
Please Pray for our safe return! Thank you for supporting us! We appreciate it all so much!

Much love to everyone,
Garrett and Jennifer

7/27/08: HOME AT LAST! HOME AT LAST!
We finally made it home! What a wonderful feeling! The plane ride was long but smooth. None of us slept much during the 22 hours home. I think we were just too excited to get back to Kentucky! Garrett missed his room and has spent a quite a bit of time in there since we got back. He has also been patiently waiting for me to do laundry. Anyone who knows Garrett, knows his love of the washing machine! We tried to stay up all day without a nap so we will be able to get our days and nights back in order. We were exhausted yesterday, but it seems to have worked so far! We had a lot of company yesterday and that helped us to stay busy and not think about sleep.

Now that I have had time to look back on our experience, I can say that I truly am glad we did it. I know a few days ago, I was questioning our decision, but now I see the experience differently. We were all pretty emotional over the ordeal that was happening to Glen and it clouded our judgment for some time. And for some clarification, it was not the stem cells that caused Glen to get so sick, it was the method the doctors used and that is now being addressed by Kirchner and the president of Bike.

No matter the outcome, improvement or no improvement, at least we can say we tried. We have had an experience that some people Will never have in their entire lifetime. We have been blessed to have this opportunity to help our child and we are forever grateful for that. I feel in my heart that Garretts life will be changed for the better because of this.

We had our difficult moments but for the most part, it was good. The language barrier was very difficult, but a smile is a universal language and that helped us to understand one another. The people at the hospital were very caring and we made some lifetime friends. Garrett has had some improvements. They may have been small, but they are still improvements. I know he will continue to grow from this experience. The doctors have told us that optimum results will be between the 3 tot 6 month period after returning home. We still have miracles to witness and we are excited. Everyone who has seen and talked to Garrett since we have been home has told us that they see a difference not just in his eyes, but his actions. It is so encouraging to hear that from someone outside of the situation. We are anxious to see our eye doctor to see if he finds improvements as well.

For those families who are considering of doing this, I encourage you to do so. My advice is to be prepared and speak to families who have been and can help you prepare. You need to know what to look for before and after spinal procedures which is something we did not know. It would have made things much easier for some of the parents. Still yet, the treatments are very promising and there is nothing like the gift of hope for your loved ones.

We also want to thank everyone for the outpouring of love and support for our family. We would have made it eventually, but having the love, support, donations, and support from our family, friends, and communities, our hearts were filled with confidence that we were doing the right thing and that all will be okay. Please continue to pray for those who are still going through the treatments and for our family because we still have a long way to go.

God has blessed us and we feel he will continue to do so!

We will still continue the updates as we see changes!

Love to you from our entire family!

7/31/08: Miracles do happen! Garrett had his first eye appointment yesterday after his treatments. Tom and I could see changes by just watching him at home, but it means so much to have his doctor to validate that there are definite improvements! To start, Garrett hates the eye drops! We usually have to hold him down so the nurse can get them in his eyes. Yesterday, he held his eye open for her! That is huge for him! We were so proud of him!
   Garrett has never been able to see the eye chart. He couldn't see far enough to see anything on the wall opposite of him. The nurses will usually use cards they can hold in front of him and will gradually move them away to see how far he can see. They turned the lights down and turned the eye chart on just to see if it is possible. We had Tom wave his hand and asked Garret what letter was behind it. He just nonchalantly said, "E, the e says eh!" I couldn't believe it! Tom and I just looked at each other. Even the nurse was impressed! He couldn't see it with his right eye, but he has a huge improvement with it as well! We were even more excited to see what the doctor had to say! The doctor wanted some more optic nerve pictures taken and they showed improvements as well. They were much clearer which shows that his eye movements have slowed down a lot! The doctor was improved with the improvements he was showing in such a short time. I think he was excited but was trying to hold back, either for our benefit not wanting to get our hopes up too high, or he was just afraid to give it all 100% credit. That is okay. He is still very supportive and anxious to see for himself what happens in the next three months. We are very blessed to have such a wonderful team of doctors. For the first time, we feel like we are in the right place with the right people for Garrett. That is such a wonderful feeling!
   We have also seen changes in Garrett other than just his eyesight. He seems to have started "growing up" in the last two weeks. He is putting things together and it is fun to watch. You can see him thinking about what he is seeing. His language is much better and he is speaking in clearer sentences that make sense. He is more tolerant of unfamiliar surroundings. He has been a great mood and more active. It is indescribable the feelings we have watching him become a child who is growing into the age he is. For so long he has been a 8 (now 9) year old boy walking around in a 5 year old world. He is coming out of that and it is amazing. I am anxious to see how he does this school year.
    I feel only good things are still yet to come and I cannot wait to share them with all of you!! Like I said before, MIRACLES DO HAPPEN!

9/24/08: A long awaited update!

I know everyone has been wondering where we have been and how things are going. We have been so busy and I apologize for not updating sooner!
Garrett had an endocrinology appointment on Monday. It went pretty well. Mainly just a check up but I am anxious to hear how his blood results come out. We probably won't hear anything from them for a week or so. Garrett has grown quite a bit and his weight has finally leveled off. Everyone kept telling us that he looked like he had lost weight. He hasn't but he has gotten taller and that makes him look better.
He is doing wonderful! He loves school this year and is really getting something out of it! That is a huge change! He is in a better mood, seems to have more energy, and is certainly more outgoing. His confidence has increased and I absolutely love to see that! I can still see slight improvements in his sight. I won't notice anything for a while and then he will make a comment about something he sees and it totally blows me away! I am thankful even for the smallest changes. They told us at the hospital that his biggest improvements should come in three to six months after his treatments. October will be 3 months. (That is actually hard to believe!) We go back to the eye doctor October 30. We are anxious about that! Even Garrett seems anxious to go. I think he is more anxious about seeing Dr. Kitchens and his intercom system than having the eye exam! Quite alright!
I have had some more time to look back at all we did, and I can still hardly believe that it really happened. I would still do it again in a heartbeat although I may not do it the exact same. I would have about 500 more questions to add to the 500 I already had! I miss everyone we met there and still try to keep in touch with them. We all became a small, slight dysfunctional little family! Everyone was amazing! Even if Garrett doesn't have vast improvements with his sight, he has already improved in areas I wasn't expected and has become a different child all in good ways. He was amazing before but he has just blown me away since we got back. He is a great human being and I continue to learn how to be a better person rather than me teaching him.
I could go on all day about my baby, but I will stop here! I will continue to update on his progress and I promise to do a better job!

Again, Thank you to everyone for all of your amazing kindness and support!

11/5/08: Finally an update!

I am not sure exactly where to start! It has been awhile since we have been on here, and for that, I apologize! Garrett's enodocrinologist appointment was fairly uneventful. We just did the routine check up and nothing has changed. If anything, his levels were a little off, but he had not had anything to eat and it was starting to get to him!
We did have our 3 month check up at the eye doctor on the 30th. Garrett was up really early that morning and ended up falling asleep on our way to Lexington. He was in a good mood, but was just too tired to put forth an effort with the eye chart. The only thing we were able to compare this time was his photos of the optic nerve. Dr. Kitchens showed us the photos from before we went to China, the photos from when we got back, and the ones we took that day. There was definitely a difference. The optic nerve is getting brighter each time and the blood vessels are looking stronger. He said he color was crisper and clearer each time. He could not tell us if the nerve was getting pinker due to the fact that Garrett's nerve was very pale to begin with. Overall, Dr. Kitchens was pleased and is anxious for our 6 month appointment in January!
Garrett is showing some more improvements but I am seeing them more in his attitude, personality, and confidence rather than eye sight. Without question, I feel all these have improved due to his eyesight getting better. He is trying more things on his own, such as playing outside without someone right next to him. He is wanting to go more places where as before he never wanted to leave home. He is more detailed in his drawing and building with his blocks. He generally seems happier and that thrills us to death!
It is hard to believe that it has only been 3 months since we have got back from China, then agian it seems like it has been forever! I am so thankful for the opportunity we had and for the chance at giving Garrett more hope. It was hard getting there and it was hard while we were there, but all of the changes we have seen in Garrett has made it all worth while!

I promise to post more soon! Thank you for still checking on us!

Love to all of you!