Posts filed under 'severe cortical visual impairment Blog'
Its been a little while since we’ve posted… I’ve just been waiting to see more progress before I posted on our blog. Things are pretty much the same. Bradley is getting stronger. He is walking very well but is still hesitant because of the visual impairment side of things. He could walk from point A to point B without any trouble if he had the vision for it. Its exciting to see the strength he has gained in his legs and we definitely feel that has improved since before we went to China. We may see some changes in his bowels, but are still hesitant to say there are definite changes there.
As for Bradley’s eyes, we don’t know. We aren’t discouraged and still feel it was well worth the time/expense to go to China but we haven’t seen much changes. We HAVE seen little subtle things that may be different but I don’t want to get excited about these things until there are definite improvements. Bradley has squinted a couple time when we’ve gone into the bright sun, but its not very consistent. His eyes seem to dilate quicker than before but again, its not consistent. We are being “conservatively optimistic” as we like to call it! We will keep posting as time goes on. I will take him to the eye dr. in a couple months and see if he sees any changes in Bradley’s eyes. For now, we will keep doing the little things to “test” his vision and hope for continued progress in that area! Thanks to all…
July 28th, 2009
We made it!! Okay, so its been almost a week but really, I needed that week to catch up on sleep, laundry, cleaning, and life! We had quite the adventure getting home last week. We arrived at the airport at 9:30 in the morning for our flight to Beijing. Our flight was 2 hours delayed because of weather problems in Beijing. After 4 hours total of waiting in the airport, they approved us to take off. We loaded the plane and then after they closed the airplane door, they said the weather was too bad again and we had to wait it out, ON THE PLANE!! We waited again for almost 2 hours in the airplane. Yes, with a 2 year old and 4 year old its not the most pleasant thing. Jason and I were very concerned that we weren’t going to make our connection and prayed and prayed we’d make it there in time to get home, meaning America. Finally our airplane was cleared to take off. We thought we’d be okay and we’re relieved to get our plane in the air. But, the nightmare didn’t end there. I was watching the little map thing they have on the big screen and it shows you where you plane is on the map and marks where you’ve come from and where you’re headed. About 20 minutes out of Beijing, I see our plane do a 180 turn. I looked at Jason and said, “why is our plane turning around?” fearing the worst. Sure enough, they made an announcement that we were headed back to Qingdao. I was sick, I started to cry and felt hopeless. Here we were, we’d traveled for 7 hours with two small kids and we were headed back to Qingdao and didn’t speak a lick of Chinese and had no clue what we were going to do next!
Well, we landed in Qingdao and here’s where we see the little tender mercies that we have been so blessed with our entire trip. On the same flight was a couple from Canada/US who were headed to Beijing and then on to Singapore. They both spoke Chinese and the wife spoke was very fluent. We had met this couple 2 weeks prior at a McDonald’s downtown. We started talking with them there and had a pretty in depth conversation with them as to why we were in China and what we were doing. We ran into them before our flight originally left Qingdao and chatted again and they asked how Bradley’s treatments had gone. They were wonderful people. Anyway, when we landed we went to the ticket counter and I said, “English?” Everybody looked at me like “are you crazy?” and I felt my heart sink. We were totally turked. Then this woman came up and smiled at me and started speaking chinese to the ticket counter lady and told me that we needed to wait it out or find another flight. Jason and I asked them if we could tag along with them for a while since we had no clue what was going on. They were more than willing to help our little family figure everything out. The wife, Sherry, took Jason to the ticket counter while the husband, Ian, took the boys and I into the first class lounge to wait until it was all figured out. The airport was mad chaos! The boys were on edge and I was on the verge of breaking down at any moment. It was the hugest relieve to get away from the chaos and sit on the couches with the boys and Ian. Bradley fell asleep and Tyler played with Ian the entire time! It was such a blessing. After one and half hours, Sherry came back and told me that Jason was upstairs with Wendy from the hospital and a shuttle from the hotel was taking us to the Holiday Inn for the night. We were going to fly out in the morning and go through Korea on Korean Air and get home that way instead. The ticket lady from the airport helped me and the boys get to Jason and the shuttle. I wanted to kiss and hug Sherry and Ian and even now I get emotional to think of what they did for us. They didn’t worry about how they were going to get of China but devoted themselves 100% to our family for almost 2 hours to make sure we were okay and could get home as soon as possible. They were angels.
Wendy from the hospital was fabulous. She had called the hotel and we made it back to the hotel by 7:30 and had a wonderful dinner, nice showers and the boys were champions. Never once were they a problem the entire day, even though it was a nightmare. Jason and I were very emotional as we sat in the hotel that night and thought how everything had come about. We both felt save and knew that everything with our flight happened for a reason and we felt very good about the changes that were made and were ready to try again the next day. We joked about the fact that we had traveled for 10 hours, 700 miles and had a net gain of 1 mile! I could look out the window and see the Qingdao People’s hospital.
The next day went along slick as a whistle. Wendy took us to the airport again, with a new airline and personal escorts the entire way until we sat on the plane. What a blessing that was!! The boys traveled like champs and even slept for 9 1/2 of the 11 hour flight! It was a breeze and we made it home on Wednesday night around 5:00.
We were welcomed home to a decorated yard and garage from the girls in the ward. Our fridge and cupboards were full of food and yummy dinner was in the fridge ready to be heated and eaten. It was amazing and we were so happy to know that we are surrounded by wonderful people/family who love us and have supported us throughout this entire adventure! Thank you to all for EVERYTHING!
We are all adjusted to the time and have finally been able to all sleep in our own beds all night! (It took a little $5 bribe in Tyler’s case but it worked and was well worth it!)
Still no progress with Bradley’s eyes. His legs are strong and we continue to see improvements in his bowels. It’s truly amazing and we already feel our trip has been worth it. We will keep updating the blog as weeks go on and hope for continued progress.
June 24th, 2009
We spent the weekend downtown again and saw everything that we wanted to see before we go home. Yeah!! We fill like we’ve seen all we wanted to see and have enjoyed our time in the country. The other day when we checked into the hotel we walked into the lobby and what do you know, a couple of ASU Sun Devil students came up to us to say hello. I was in my ASU visor and jason had a sun devil shirt on. One of the boys had his sun devil shirt on too, go figure! It’s not like we saw them in another state, we saw them in a whole different country! It was very fun to chat with them. We found out their with a group of students/friends who are over here touring for a few weeks. They’re all ASU students except for one kid from UofA. Later, the next day, we were at the Jimo shopping area and we ran into more kids from the group. What a small world.
We spent the morning touring and also ran into some other friends who are here getting treatment. We stopped on the pier to talk to them and within 1 min. we were surrounded by Chinese people just staring at us and taking pictures. I’ve never seen such a crowd. We all immediately got out our cameras to take pictures of the audience that we drew and that seemed to thin them out. They didn’t want THEIR picture taken but had no problem taking ours. haha. Today was an interesting day and people seemed more curious than ever. Many people touched both the boys and 2 or 3 people have actually tried to pick Bradley up out of his stroller!! I can tell that Tyler has begun to hate going places and just sits in the stroller with his head down and tells me he doesn’t want people to point and laugh at him anymore or touch him. We told him to point and laugh back and say “boo” which means no. We’ll have to change those directions once we get home. ha
Bradley’s last Stem Cell treatment is tomorrow! One more needle and one more time sitting still in a hot room for an hour. He continues to do well. He is walking like crazy! It is truly amazing to see the difference in his walking over the last 3 1/2 weeks. Before we came to Qingdao we’d be so excited if he’d walk 10-15 steps. Now he’s walking 5-6 laps in the PT room and walking the entire hallway (which is about 80 yards) with very minimal assitance, we mostly just have to guide him away from the walls. He is even learning how to go up stairs while holding on to the rail. He hates it but is getting better. He has truly benefited from being here and receiving all the treatments and therapies. Some days I feel he has more control of his eyes but I know that we’ll just have to continue to play the waiting game to see if his vision has improved. We’re willing to wait and have little doubt that these stem cells have helped in many ways.
We are going to miss everyone here. The nurses, therapists, interpreters, and staff have been wonderful and have made this a good experience for us. I know that Bradley will miss Andy more than anything and has made such huge amounts of progress because of him. Only 2 more days on our countdown chain, (joking!) but we will be home soon.
June 14th, 2009
So here’s a funny story for you…Bradley had his 5th stem cell treatment this afternoon and did great as always. On the nights that he has his treatments, one of the nurses will come in at 9:30 (like clockwork) and check his temperature to make sure it is normal. Well tonight Evonne and I are up sitting on the couch, she’s reading, I’m working and in comes the nurse. Most of the lights are out so the nurse comes in and announces she needs to take Bradley’s temperature. She immediately walks over to the hospital bed, where apparently most patients sleep, and takes Tyler’s temperature. She looks down at him…looks at us with a surprised look on her face and declares…”This is not Bradley??” We laughed and pointed at the crib where Bradley was sleeping and has done so every night for the past MONTH!! So then she takes his temperature as we cringe becuase he is such a light sleeper that we were afraid the beeping of the thermometer would wake him up. The temp was normal but as she finished, her cell phone rings!! Luckily he stayed asleep and we had a good laugh. This may be one of those “you had to be there” stories but we thought it was pretty good.
We are down to the final stretch. We started getting our China House picked up and organized and even started packing some stuff up. We have three more days here then we head for home on Tuesday. We are excited to head home and see all of our family and friends but this will for sure be an experience that we will never forget.
June 12th, 2009
Hey all,
its been a wonderful weekend and we are excited to tell you all that we get to come home a little earlier than we planned. Yeah!! Bradley will still have all 6 treatments, its just that our last one was scheduled for next Wednesday and we didn’t leave until Saturday. The doctors told us they’d change his last treatment to Monday and we were able to change our flights to leave here on Tuesday. We are totally stoked and can’t wait to get home and be in our own house, with our own beds/rooms… and showers!
We had a wonderful weekend, we spent some time in downtown Qingdao at the shops, an aquarium (like Sea World) and were able to go to church again on Sunday. This really is a beautiful place. Even downtown is beautiful and reminds me of California in some places. The coast is awesome and we have loved that we’ve had many opportunities to really experience Qingdao and see all the beautiful things here.
Bradley did great with his 4th IV. We have two more to go. We have seen little progress and are very pleased with that. Some of the friends we’ve met were here for their second round of stem cell treatments. They had such miraculous results with their first round that they wanted to come back and do it all again. We’ve met one quadrapalegic who gained function of his arms and hands, a boy who was hit by a car years back and lost all vision gained light perception and can see objects in front of him, outlines. We also met a little girl who held her was eight months old and held her arm behind her. She had very limited use of it. We met her one week before she went home and we would never had guessed she had a “bad” arm. She was using it just as good as the other and would play with toys and jingle bells with it. Truly Amazing… we are witnessing this first hand and can’t deny that these stem cells can change lifes.
We are excited to see progress in Bradley over the next several months and hope that you all will continue to pray for his body to respond to these Stem Cells. We are ready to come home, yet we have been so blessed to be able to be here and do this for Bradley.
Off to the Holiday Inn for dinner… yeah for quesadillas!!!
June 9th, 2009
Sorry its been a couple days since we posted last. We had a free day this Friday and we headed downtown to stay the night. It was fabulous!!! We feel rejuvinated and ready to tackle this next week. We were able to stay at the “Crowne Plaza” hotel. I love China because most things are so cheap. Tyler was in awe the whole time because the hotel was beautiful, it had a bowling alley in the basement and an amazing pool. I told him to not get used to it because he’d probably never stay in a hotel like this again…unless he’s in China! Our friends, the Smith’s, came down on Friday night to have dinner with us and we bowled and went swimming. Someone from Beike told us that there is this place downtown that had the best tacos. We decided to give it a try. The taxi took us into the heart of the ghetto (or so it seemed). It reminded me of NY or Philedelphia ghettos (yeah goodmans, remember that!) There weren’t any street lights, the roads were tiny and I felt very nervous to be there with my little family at dark. He dumped us out on the street corner and pointed to this little dumpy restaurant and said “there”. What??!! It was crazy. We walked in and went all the way to the back of the restaurant where they had wallpaper up with masking tape on all the seams. Hilarious. They sat us and brought out cups and a pitcher of “water”. We looked at the pitcher and said “no, no, no”. We knew it wasn’t the best idea to drink that. Luckily we saw a picture of a sprite can in the menu so we were able to point to it and order that to drink. Ordering was hilarious. The better you are at charades, the more they’ll understand you. We had a nightmare of a time ordering but our friends just did it like they were veterans. Now we know. The food… well the “delicous tacos” were… different. they looked like delicous American tacos, and to be honest the tortillas were very good. But the tacos were FIRE hot!! I’m not even exagerating. We were eating pure hot/fire peppers. It was unreal. We all took a bite and were dying… even Jason couldn’t finish the taco so I knew I wasn’t being dramatic. We can now say that the hottest tacos we’ve ever had was in China… strange.
Today is Tyler’s birthday. Well, kind of. It’s actually tomorrow, Sunday the 7th. We told him earlier this week that his birthday was on Sunday and he got very upset that it was on Sunday and said, “No, I want my birthday to be Saturday. Sundays are boring.” What do you say to that? I didn’t think it really mattered anyway so for everyone else here, today is the 7th ofJune and its Tyler’s birthday! We’re having cake this evening and we just opened some presents and decorated the “house” with birthday stuff and are trying to make this a fun day for him.
We are continuing to see progress with Bradley. It’s just little things but to us it is little things that can better his life and we are so happy that we are here. He is doing great and everyday we are excited about what else will come. Our 4th IV is on Monday.
I had a really neat experience with tyler and Bradley the other day. We got to the hotel on THursday evening and Jason headed over with the interpreter, Jack, to try and change our flights so we could leave for home a little earlier. As tyler and I were unloading our bags in the hotel room I could tell that something was up. He was very melow and quiet. he sat down on the chair in the room and i just continued to unload stuff. After just a couple minutes he said “Mom, can we say a prayer for Bradley?” I was caught off gaurd and said “Absolutely Ty, come on over on the bed and we’ll all 3 say a prayer together”. He asked me if he could say the prayer. So we folded our arms and Tyler said one of the sweetest prayers I’ve ever heard. he prayed for Bradley’s eyes and he prayed that the stem cells would help Bradley’s body be strong. I was so touched and just cried through the entire thing. It was one of the sweetest moments I’ve had with my boys and i was truly touched by the spirit and knew that Tyler had felt the spirit too. It was amazing. He loves his little brother and wants him to be safe and healthy.
This is just one example of the tender moments that we are experiencing here as a family. Thank you for your continued prayers… we are excited to see you all soon. We love you
June 6th, 2009
As many of you know, we LOVE taco bell. This morning when we woke up we started getting going and getting everyone breakfast and i asked Bradley what he wanted to eat. He said, “a bean burrito”. Haha. Then a few minutes later he said “Mom, dream about taco bell.” We laughed and had to agree, I think we’re all dreaming about some good mexican food (yes, taco bell is in that catagory) and could really go for a bean burrito. It was hilarious.
Another great day. Bradley had his 3rd IV today. It went well, as usual. He wasn’t quite as calm this time around. He got really antsy toward the end and wanted to just get down and get walking. On treatment days they come and put his IV in around noon. I have no idea why its that early because his treatments aren’t until 4:30 or 5. But, its okay. The only hard thing is we’re putting the IV line in his foot and we can’t put his braces on his feet to walk. We have to carry him everywhere and he starts to get really impatient and wants to walk. Other than that, it’s a breeze and he’s doing great.
As I said in the last post, his legs are getting stronger. Its so hard to tell if there’s any improvement in the other areas because he’s so young but still, we have a lot of time in the next 6 months to watch for improvements in many areas that he is delayed. He continues to do well with his therapy. I have posted a few videos on my facebook page of him doing therapy, he’s so stinkin’ cute.
We continue to be baffled by things here in China. Today i’ll tell you about the elevator. We take the “express” elevator to the VIP ward (the Beike stem cell treatment floor) and from the ground level, you can’t access any other floors than 8,9. There’s a sign posted right next to the elevator button but i don’t think many people read it. it’s so funny to watch because we’ll get on the elevator and someone will rush in at the last minute and push their button for their floor. If they want to go any where other than the 8th or 9th floor, the light won’t light up because this elevator doesn’t stop there. The people will stand and push over and over and over again and still, nothing. We just smile and giggle because we have no idea how to tell them. Most people will just stay on the elevator and watch the numbers go up and up. When it gets to their floor they’ll try to press the open door button and think that’ll do the trick. It’s very amusing!! One time I tried to tell some guy “Only 8,9″ and point to those buttons but he just looked at me like I was crazy and so I let him figure it out. I haven’t tried to help since. Story- Our friend Rachel got on the elevator and in comes a pregnant lady who’s in labor! She has about 4 other people with her and they jump in and start pushing their floor button real fast. It’s not lighting up!! The women bends over and grabs her tummy and winces in pain but doesn’t make a peep (they have a thing about pain being good here in China and nobody makes a sound when things hurt). Anyway, nobody in their group says a thing, they just keep on pushing the button harder and harder thinking its going to work. Rachel pipes in and tries to point at 8,9 floors only but it doesn’t help. They finally get off the elevator, the lady grabs her stomach again and has her contraction, nobody makes a sound, and they try another elevator!! sad, yet very funny! (I’m sure she made it fine so thats why I say its funny)
We’re hitting the sack now… check out our videos on facebook. We are all well and happy to be here.
June 3rd, 2009
The only reason I titled this post that is because it is so stinkin’ hot here I think I’m going to die. Really, that’s coming from a family who lives in Arizona. We didn’t plan for such hot weather and we actually thought it’d be a lot cooler than it is. In downtown Qingdao, it’s cooler because its right on the coast. However, we are more inland and it is very hot/humid. Bradley is getting little rashes because he’s so hot. In therapy this afternoon, he kept falling asleep because it was so hot in there and he was so tired. They don’t turn on any air conditioning, ever. All we have are a couple fans. One mom came out of her room today and told us it was 95 degrees in there! What the heck, right? We’re not joking…it’s nasty. We’ve decided that that is why they don’t turn the hot water on. It’s so we can keep our bodies guessing, FREEZING showers and HOT air. We are still trying to figure it all out, we’ve had ONE warm shower since we’ve been here and the others feel like we’re standing under a melting iceberg. Yikes!
We had another fun day today. We ended up heading downtown this afternoon with another family here. Matthew, Rachel and their little girl Carlie (8). We went to a place called “May 4th Square”. There is a really cool monument that they have there and its right on the coast. It’s right next to the place where they held the 2008 Olympic rowing contest. We walked the square and saw tons of people flying kites. They were some of the coolest kites we’d ever seen. We went to dinner at “The Diner” again and I it was deeeeelicous. The boys crashed on the way home so it worked out perfectly. It was a lot of fun and we had some good company.
Bradley is doing great! We’re so analytical about everything Bradley does and are watching for any improvement we can find. We should probably take it easy but its hard not to. He has been walking like crazy and his balance has improved so much its almost unbelievable. Truly a blessing. During afternoon therapy Andy, his therapist, had him walking the lengths of the room over and over again. One time he had him walk to me on one side and Bradley would turn around at the end and walk to the other side. He did it like 5 times in a row without us helping him or balancing him. It was AWESOME!! His legs seem to be much stronger than they were before we came here. I know this sounds funny but as his mom, I see a huge difference. He used to walk a little pigeon toed and didn’t seem to have enough strength in his legs to hold his feet straight when he walked, this is changing daily. Today when he walked, his steps were absolutely perfect. His toes stayed facing forward. A couple times when he’d lose his balance they’d turn in and then he’d get balanced and walk with them straight. That’s reason to be happy we’re here right there. It’s awesome. He has another IV treatment tomorrow and again, we hope it goes as well as the others.
We continue to learn everyday and laugh even more. China is such an interesting place. We’re taking pictures like crazy and have a load of stories to tell. We love this adventure we’re on but truly cannot wait to be back him with you all.
I’ve found out that I can no longer post pictures on this blog because we’ve reached out limit. So go to my facebook page for more photos of our family here in China. Till next time…
June 2nd, 2009
Today started out a little bit rough because the kids were cranky but ended up being a wonderful day. Bradley had regular PT, Electric Wave Therapy, and Standing therapy this morning. He is still doing well with his therapist, Andy. Today more than any other day I noticed that he was asking for Linda, Kerry, and Varsha (his weekly therapists at home) and it was very sweet. After therapy we had a little lunch and some phone conversations with families. I have to give a little shout out to my little brother Tanner who got his mission call to Buenos Airies (sp?) Argentina!! He leaves in September and we are so proud of him and love him dearly!!
Jason and I have put a lot of thought into the acupuncture thing that we turned down earlier. All of the other patients here receive acupuncture and say it has helped them tremendously. Even a family from Ireland who left last week told me that they will hopefully continue doing it with their daughter when they get home. And there daughter was only 8 months old. So, we have decided to try it. We want to do whatever we can to stimulate those nerves in Bradley’s body that control his eyes, feet, arms and legs. We are hoping for good results through all this. He had his first acupuncture this afternoon and he did quite well. ( I didn’t go, i stayed to be with Tyler but will go tomorrow) Jason said he cried when they put the needles in and took the needles out but other than that he did great. I’m so glad for that. I don’t think we’d do it again if he had a hard time throughout the entire treatment.
After the afternoon therapies we got a very pleasant surprise from a fKorean family that took us to church this last Sunday. Jennifer and her two daughters Kristina (15) and Bobo(9) came to the hospital to visit us. It was so wonderful. They invited us to the park and so we all walked down to Century Park. We sat on the blanket and had some snacks. They offered us their whole tomatoes that they eat like apples but we didn’t want to take their tomatoes. haha. The kids and Jason went on the airplane ride and the bumper cars. Tyler and Bobo ran around the park and then I took the two girls and Tyler on the paddle boats. It was so nice to get away. They are some of the nicest people we’ve met. They all love the boys and play so well with them. We spent a little over two hours at the park and as they left they bought Tyler and Bradley some bubbles. (I forget to mention that they also brought Tyler a birthday present when they first arrived at the hospital to visit.) It is so wonderful to meet people who are genuinely kind and are continuing to make us feel at home.
Funny story, we’ve now seen different people who find flowers on the side on the road and decide they can pick them, roots and all, and put them in bags to take home. Today in the park, there was a man who walked over to a beautiful area of snap dragons and pulled up 3 full grown plants and put them in the bag that the women with him was holding. We took a picture because we couldn’t believe it. We asked Jennifer if this was normal and she was shocked. We told her we’d turn the picture in to the park police so they could catch the man! it was un real…
Here’ sthe deal, to see pictures you can go to my facebook page. it’s under me, evonne davis. For now, that’ s how we’ll have to post them. Loves
May 30th, 2009
Bradley had his second round of Stem Cells today and he did great again! They had a little bit harder time getting this IV in his foot so Jason had to take him downstairs to the peds area of the hospital where they got the “oldest” nurse to put it in. I’m sure they meant the Senior nurse and most experienced but whatever. She got it in her first shot so we liked her!
Again we just sat on the couch as they ran the stem cells and flush through the IV and in my mind I’m thinking, we had to come half way across the world to do this?! Wow, at least we are getting the chance to do this for him, wherever it may be. We do love China and have really begun to enjoy our time here. If only they’d stop turning off the hot water! We actually had no water and some points today, who knows.
So, he’s doing great. We’re here playing in the room and will soon put the boys to bed and let the stem cells do their thing! We want results so badly but we must remember that they take time and we may not see anything improvements for a couple months to come. But, I know they’ll come. Good night and love to all.
this blog thing is so limiting and I’m sorry that we can’t figure out how to post all the pictures that we want to. we’ll give it a break for tonight and hopefully i’ll be able to post IV photos tomorrow.
May 29th, 2009
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