Hunter had pictures taken of his optic nerve post treatment on April 25. The first pictures of his optic nerves taken in December before stem cell treatments revealed that his nerves are white and small. But the most recent pictures showed thicker veins surrounding the nerve that is giving the optic nerve a richer blood supply and better circulation. They are also are becoming more pink. They haven’t grown much yet, but his opthalmologist said that will definitely take longer than a few months. He is scheduled for another MRI on July 7 to determine if the optic nerve has begun to grow behind the eye. Visually, Hunter is able to locate light switches and door knobs. He climbed on the table in his bedroom and turned his light on! He reaches for things when hold them out for him. He is even able to walk down our front steps by himself! We can’t determine a the numbers on the 20/20 scale as of yet, because Hunter is still too young. Hunter will be on Fox 7 news probably by the end of next week. When I get a definite date I will let you know those and the times. His progress is amazing and something we all still need to pray about and to praise God for. He is still working on Hunter! We are waiting to see if we got the grant I applied for to purchase a hyperbaric oxygen chamber for Hunter. The chamber is a large piece of medical equipment that delivers pure oxygen which will help the stem cells to multiply and further assist the development of Hunter’s optic nerve. Since coming home Hunter was diagnosed as being growth hormone deficient. Which means his body cannot grow on its own. He will soon be starting daily growth hormone injections. It’s sad to accept and I don’t want him to go through that, however the growth hormones have the potential to help the optic nerve grow as well. But, the growth hormone defiency DOES NOT mean he has SOD which would mean part of his brain is missing. SOD is septo-optic dysplasia which is similar to the eye disease Hunter has but is further complicated because the septum pulicidum is absent from the brain. There is a big misconception about that, but in Hunter’s case he doesn’t have SOD in addition to the other complications that Hunter has. Nonetheless we still need your prayers and any donations you may wish to give or to help raise for Hunter’s benefit. You can send those to First Kentucky Bank payable to Hunter Burden 500 N. Main St. Beaver Dam, Kentucky 42320. If you have any specific questions or concerns you can e-mail me directly at BSMS67@aol.com. I don’t always get to update the blog, but you can contact me at the e-mail address above. Thank you for your concern for Hunter and all the prayers and support.
May 24th, 2008
Hey, everyone! Hunter is continually improving and he was actually watching TV and laughing! Keep praying for him and all the other people going to and from China and God will keep working!!
February 21st, 2008
Hello everybody I’m sorry that I haven’t updated Hunter’s blog in a while. We’ve all been sick. Hunter was actually watching TV over the weekend and I truly believe that God is certainly not done making these improvements yet. If you’ll notice the title of this post, I have been to Church today and I feel GOOD! At the Church today we sang a song about how we need to thank God for what he’s done and how we need to remember to thank and praise Him for our blessings. He has certainly blessed Hunter and our family. It wasn’t just the doctors, it wasn’t me, but it was GOD that made this happen and He is the one who is improving Hunter’s vision and we need to remember when we pray not to only pray so ask for something but to thank and praise Him for what he’s done and what He is going to do. I just can’t get this off my mind today and I think God has laid this on my heart for a reason. If you are not right with God you need to talk to Him about it. God and worshiping Him is the greatest blessing you could ever hope to receive. Hunter’s sight is improving so much and it will continue to improve as long as we BELIEVE!!!
February 11th, 2008
Hello, everyone. Thanks so much for all your comments and support. We are leaving in less than 24 hours and I can’t wait. Hunter is getting better and better as time goes by. We are getting packed and preparing to go. We took some pictures with Rylee and Lydia who also have ONH and is receiving stem cell treatment. We missed Carl he got to leave this morning, but we got several picutres, though. Everyone is envious that we get to leave tomorrow! I will miss those sweet little girls! Hunter is still talking, echoing mostly, but he is talking none the less. His new phrase is “Hang on, Snoopy!” Which is too cute. We should arrive home at approximately 9:17 PM, lets hope that the weather will let us, there is a bad snow storm in Beijing which is where we go from Hangzhou. I will also try to load some pictures on here and I hope to get Hunter a website, but I have a hard time with that. Lets keep praying for all the people that are here and wish to come here. I hope they all can come and show great improvements. Also when Hunter gets back he will have intensive therapy, have to go to an endocrinologist, opthalmologist, and begin preparing for preschool which includes having to get in a pair of shoes for more than 5 minutes, and get potty trained. And we can’t forget that he needs his hyperbaric oxygen chamber. Which will cost between $10-20,000.00 so if anyone has any more fundraising suggestions or can help it would be most appreciated. I am going to keep writing on this blog as Hunter keeps improving so you all can keep checking on us. Thanks for all the thoughts and prayers and we will be heading back to Kentucky on Thursday morning, which is your Wednesday night!
January 30th, 2008
Hunter is sleeping away after his 3rd spinal, which is the 5th and final stem cell transplantation. He was given extra medication to get him sedated enough to complete his last injection. He fought them hard so he had additional shots to calm him enough for the IVs and transplant. He was on a monitor to keep up with mainly his heartrate but they are also checking his vital signs periodically. His heart rate was holding steady in the upper 80′s, lower 90′s so they were able to unhook him from the monitor. He is still receiving fluids. He will get around 4 bags of saline since he hasn’t been able to eat or drink since breakfast. When we got our lunch which was McDonald’s yet again, he got the bag from the dresser and was digging in there trying to locate his lunch. When he was unsuccessful at that he found a sippy cup that had a swallow of milk and I had to trade him for an empty one. Hunter wasn’t allowed to have anything to eat or drink for 6 hours prior to the procedure because it was too dangerous. He has been stuck a total of 21 times due to IVs, attempts to insert IVs, lumbar punctures (spinals), a sedative shot, and a blood draw. Hopefully he won’t have any more sticks for the rest of our time in China. They had a team of 5 nurses to put his IV in today and they had to go get Kitty from the 18th floor who was Hunter’s nurse when we first arrived to put the IV in. Thank God for Kitty she got the IV the first time every time with Hunter. Before the treatment, the doctors came in this morning and Hunter is responding to the LED-like light and doing well. Remember we leave Thursday as do Carl and Paul who I have been corresponding with through e-mail since before either of us had made it here so lets pray for a safe return and for continuing of progress for he and Hunter along with all the people here who have travelled from several other counries. Thanks for your support and comments. I will update this blog before we leave and will continue to post his progress when we get home for those of you who want to keep up with the little guy.
January 28th, 2008
Hello, I am so very excited to tell you that Hunter is gaining sight each and every day! Today he was getting in trouble because he was knocking everything over—on purpose I might add. And after I told him to stop he walked right over to me and put his hands all over my face. This is something he has never done at all. I theory is that maybe, just maybe he saw me and was just trying to ‘check’ me out, because he knows my voice and shape. Also, he chased his soccer ball all around the room which is not so out of character but there was less feel and more looking. But the improvements don’t stop there. He dropped his sippy cup and it rolled under the bed. Anyone that knows Hunter knows that when he drops something he plops down, grabs his feet, and starts squawking, but not today. Today he got under the bed and retrieved the sippy!!!!! I am so excited I think Hunter has some new eyesight, only not so much vision. Vision is something that must be taught. So lets thank God for these wonderful improvements which would not be if not for God’s will and lets continue praying that He continues working on Hunter. Also, aside from these miraculous events, Hunter is generally a very cute and funny child. He has been singing a song that was written and sung by our friend, Ray Perkins. Only Hunter only knows about two or three words of it. Evidently he heard it off our CD, but he only says “Bottle, bi, BIBLE” and he holds the Bible part for a long time. Hopefully one day he’ll learn the whole song! He also created some new sayings such as, “You found the tickle,” “You talking smack,” and “Knee How!” (chinese for hello) When the nurse came in to take his temperature she said “Hi, I’m Sophie, I take your temperature.” And Hunter’s response was, “That’s enough!” So lets remember that Hunter’s last treatment is Monday, a spinal. Unless he keeps up with his out of character acts I probably won’t update until after his final injection. Also remember that we’ll be leaving out on your all’s Wednesday night, which is Thursday morning here and should be home late Thursday night. Just 5 short days to go!! We truly need your prayers and so do the other kids who are coming and leaving China. Also, approximately 17 hours of ‘air time’ with Hunter? I forgot a birthday, Great Grandma Anna will be celebrating her birthday on the 31st so lets remember that also. Thanks for all your comments, pray for Hunter’s eyesight, a safe trip back to the hills of Kentucky, and I need my laundry back(LOL)!!!
January 26th, 2008
Hunter had his 4th stem cell treatment and it was adminstered by IV injection. Even after having a mild sedative he fought tooth and nail! But we finally got him through it and he is doing great, having no fever as of yet. I would have posted more however the room where the computers are have been tied up due to interviews, camera crews, and so on. I was going to post yesterday about our trip to West Lake but the laundry lady didn’t come back with our clothes. I only had a pair of pajamas, that surely would not be acceptable and I know this because I was scolded in the elevator, because my neck was showing. Even when the laundry came back, I sent 3 outfits and got back 1 pair of pants and 2 shirts. Lets hope I get all my underoos back before Thursday, ifnot I’m leaving them and I’ll be Kentucky bound!
We went to West Lake and found it less than the best. The ‘department’ stores are closet size and theres pretty much the same stuff in each store. I did buy Brooke 3 outfits that were simply irresistible and a crawling baby, maybe she’ll take the hint! But she better not until her mama comes home!! I also bought a gift for my sister-in-law. Hunter got a pre-cane toy that is yellow and as you push it in front it has a little bear that beats a drum (quietly) when you push it! Before we went shopping we went to Starbucks for coffee and then to McDonald’s. Shayla and Rylee came with us to West Lake by the way. At McDonald’s each of the kids got a balloon. Rylee was waving hers and Hunter reached out for it!!! I was so excited. Then in the car on the way to the mall she was waving it and he did grab it! Did he see it? I think so and I surely hope so we just can’t say for certain. We can only tell by his behaviors and actions. Any way, when we came out of the mall a very persistent man grabbed my arm showing me pictures of shoes. I said no, but he said yes he followed us almost to the car! The place was very crowded almost like Time Square. I don’t think we’ll be going back there.
The doctor came in this morning and when they opened the door they were talking among themselves. Hunter was playing over by the door. As soon as they come in he sprinted about midways the room, fell, got up and ran again! It was a priceless moment, so cute. Then of course, he wouldn’t let them give him any kind of exam. They joke and say, “Hunter no cooperate.” Which is an understatement!
We will be leaving on Thursday, January 31. We will arrive at Nashville, on Thursday at 9:17PM. So lets pray for a safe trip. Hunter’s third spinal and final treatment will be Monday instead of Wednesday so they can see what progress comes so lets remember that as well and all of the other kids and adults receiving stem cells. I don’t know when he’ll be filmed or what station it’ll be aired on or when it’ll be aired. They wanted to film him getting an IV, but it was probably safer that they didn’t and Kirshner told them from her part experience that it wasn’t a good idea. But anyway hopefully sometime before we leave they will get him. He is the youngest child here at the moment at least receiving stem cells. Our new friend, Danica is leaving in the morning so lets remember her for a safe trip and well wishes.
We have a couple of birthdays coming up: Trish’s birthday is the 26th and I am so very sure my loving husband will surely forget to call her so if you see her tell her I said happy birthday, Nicholas will be 3 on the 27th, and Lee is too old to reveal his true age, but has a birthday on the 28th so lets remember them. Also, Hunter’s uncle Wesley would have been 21 on the 30th. Thanks for all of your comments and prays and more posts will come when I can get to the computers and have more updates!! Miss Brooke, Mommy and Hunter will be home soon, remember NO CRAWLING, SITTING UP, OR TEETH until Mommy gets home, I love you!!!
January 25th, 2008
I wasn’t able to post for a few days, because the room was closed for interviews. We have received news that this program is going to be put to the test in a double-blind study here in China. This will truly be the information that the U.S. needs to help him and kids like him right there at home. Hopefully this will catch the attention of those in the U.S. We will be filmed and I will be participating in a televised in-depth interview that will have the potential to go to NBC news, this isn’t guranteed to go there, but has definite possibilities. We are going to try to make a DVD for the ONH kids that will have interviews with the families of the kids with ONH. I will let you know when this is set to be processed and tell you how you can get a copy. Tomorrow we are going to go to West Lake and then do a little shopping. We are getting restless as you can imagine, it is hard to be in a hospital especially for this amount of time. We have only 9 days to go, believe me we ARE counting down!!! Happy 7 months old, little Brookeytoodles!! Love Mommy and Bubby!!! Thanks for your comments and remember that Rylee and Lydia are here, Lydia seen Christmas lights on the tree at the nurses’ desk and Rylee put her nose to the TV!!! WE are cooking with stem cells!! Haha! Keep everyone here in your prayers and remember our next treatment is Friday via IV so pray for me that Hunter may not leave too many teeth prints!!! I will let you know of any more updates and improvements!
January 22nd, 2008
Hello, everyone. I am happy to report that Hunter’s 3rd treatment was a success! He did not sleep afterwards so lets hope that he doesn’t get a headache. The doctors came in today and shined a flashlight about 2 feet away and Hunter nearly walked off the bed to get it! So we an only tell from his behaviors since he can’t communicate what he sees. He did walk across the room and get his sippy cup off the dresser, so again thats good news and there is only more improvements to come. There has been a documentary done on ONH kids so if you would like one send your name and address to Kirshner at kirshner@stemcellschina.com and she will ship you one. Hunter’s good and well. He has had no fever so far and his heart rate was good after his 3rd injection, although the IV did not last long. Thanks for all your prayers and remember that Hunter’s next treatment is Friday via IV injections. I will post as the updates and improvements come so until then thanks for the support.
January 21st, 2008
As usual I forgot to mention something! Hunter will still have to have therapy when he comes home and we will begin potty training and things like that. Also, he will start school for disabled preschool children. Lets remember this on your prayer lists. I know it will be hard for schools to accomodate children with special needs such as Hunter’s. He will be 3 in March and starting school in August. I have to put in so early to give him enough head start to be up to the level of other children his age. And I will be ordering him a white can for mobility reasons. I need to get him to be as independent as possible and not let him be held back. I have learned that we we get people praying in volumes miracles happen. I hope that soon Hunter won’t have to have all of this, but we need to prepare. So lets just pray that God blesses us with a sighted child and for the tools to teach him, and the strength to succeed.
January 16th, 2008
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