Archive for August, 2008
Mary Patton is in pink eating cake !! She is here with her mom & dad…Joe & Nikki…they are from New Orleans & she is being treated for Battens disease..
The young chinese girl on the sofa is Adel..she is actually 20 & a college student majoring in English & heard one of the parents here in the store speaking english & aksed if she could come over to get lessons !!! so she has been stopping in some to talk with everyone here & spend time with Joelynn & Kameron..Joelynn isnt i the pic but kameron is in the stroller…she is the cutest little girl with the biggest smile youve ever seen !!! she is 4(if i remeber right) and she is being treated for a drowning accident when she was 22 months old & brought back to life after 25 minutes…they are from Canada ..the lady holding the baby who is named miles is here being treated for CP & they are from Oregon he is here with his mom Kate & both grandmothers..his dad arrives tomorrow !!!…others not in the pic are Shel & Macie..macie is 15 from Colorado & has ONH like tyler…she is doing great too..& the best kid !!! Corey who had the birthday is 3 today !! and he is being treated also for CP & he is here with his dad from Queensland Australia…another family we have gotten close with is Melissa & her mom & son Josh who is being treated for SOD also…he is 17 ..a senior in high school & incredibly smart…he is so mild mannered & we will miss them as they go home on tuesday…josh has had 6 treatments while here ..there have already been a few that left last week that were here also for SOD or ONH but i didnt get any pics of them…I know ..bad me…then we have several adults here being treated for various things we have come to know well….& finally Savannah !!! They are from Missouri & savannah is 8 with ONH, she is here with her grandmother whom she lives with fulltime & her aunt & father…she talks a mile a minute & has one heck of an imagination !!! she has barely light perception but goes anywhere she wants pretty much !!! they have been a great comfort to us while here since we share so many of the same family situations with our kids…we will stay in touch for life also…they are so down to earth & we have had a blast with them !!! we let savannah push tyler int he halls today in hsi stroller & it was hilarious !!! she did well but the stroller wheels gt turned sometimes even for me to push so he had a few head on collisions with the wall…but she was so excited she got to “babysit”..tyler really likes her too…i know that the day tyler starts talking he will be the male version of savannah…like i said in the earlier blog..these kids have touched all of our hearts in ways that we wont ever forget…on any given day that we sweat the small stuff…think of these kids & let it go….they have huge obstacles to overcome & they dont sweat it…they roll with the punches…we need to take note…well its approaching midnight here & im still up…will post more tomorrow on our updates with treatment when possible !!! keep those prayers coming…to those of you that have gone home forgive me for not putting you guys in here…i hope to get pics from shel & others so that i can let all my family & friends back home meet all the wonderful people we have lived with for this past month…times we wont ever forget…
Tami & Tyler
August 10th, 2008
August 10th, 2008
Today was another lazy day for us. Tyler, however slept most of the night for the first night since arriving here with some help from everyone keeping him up til 11 pm & benadryl !!!!!!!!!!!!!!!!!!!!
But when i got up today I felt more tired than usual from actually getting some sleep i think. We layed around most of the day then Ravena & I got a cab & went to the RT Mart to wander around & kill some time. I needed to get Tylers new favorite drink here which is called Peach Nectar !! He loves it …it sounds like hummingbird food to me !! We bought a few groceries and just looked at all the odd products they sale here, many are things we recognize..but with weird names. Like after shower spray is called something like snake water ??????? i didnt purchase any just by chance…lol….I did get tyler more yogurt, which they consume mass quantities here…but its liquid ???? i have been mixing it in baby rice cereal to thicken it up & he loves it but this afternoon i just poured it in his sippy cup & he drank it up !! I couldnt find coffee though other than instant, then found a specialty section with a few coffees but it was massively expensive. So next trip to a mall i will buy some starbucks ground to bring back here.
I did find a certain toy that tyler has latched onto here at the hospital play area, it has a small keyboard & other buttons for various sounds. One is a little girls head & when pushed plays a chinese childrens song !! He will be bringing that back to school with him to show it off !!!
Tomorrow Shel & Macie head back to Colorado, we will miss them greatly, as they have made our stay here so easy to this point..Shel’s stories & trips out have made our day most times !!! and Macie is a pure angel…she deserves everything good in life & she will be in my prayers as will all of the children that are here…forever..we have all exchanged emails & I know that we will all be friends for life from what we are all going through with these children. Joe & Nikki leave as well tomorrow headed back to New Orleans, their daughter Mary Patton is another angel..I cant not describe how much these kids touch your sole being around them & the struggles they are all going through and in the end they are just kids…as i write this with tears in my eyes to see them going through all of these just to have a glimpse at a normal life…so for everyone at home saying prayers for us …add them to your list !!! I am going to send another post to list who is her with us now & have left…and you will know what amazing people are here !
Tomorrow is stem cell day for Tyler…he should get his treament about 1:30 pm…then be back in the room around 2:30 and then we have to lay flat & still for 4 hrs before we can get up..its hard ..but it has gotten easier…think I will turn in & rest up for tomorrow…
Tonight we also had Corey’s birthday party !! it was so nice with presents & cake..he seemed to have a great time…as did the adults….he turned 3 today !!!
Tami & Tyler
Coreys Birthday !!!
August 10th, 2008
Today we had another free day to roam around. Several of the families will be leaving the first of the week & wanted to go sight see a bit more. We were invited to go back to Jesco (a mall) and then to a buddist temple. actually on I had taken pictures of from the last week. It was extremely hot again today but about 10 of us set out for another day out to kill time ! There were of course tons of stairs at the temple but our driver once again pushed Tyler & carried his stroller up & down stairs & sometimes jsut watched hom for me to look around. They had gorgeous jade at several gift shops for sale, I didnt buy anything but many of our group bought necklaces & other items. We spent most of the day out again and were surprised to not see nearly the traffic we expected with the Olympics started. Tonight some of the people leaving this week are going to a club that is in walking distance of here by the Olympic park to hang out. Many of the hospital staff plan to attend so Im sure they will have a blast & hope someone takes a lot of pictures !!!! We wont be going as Tyler isnt starting the club scene this early in liffe if grandma can help it !!!! 
August 9th, 2008
Today is a special day here with it being 8-8-08 !!! We saw many weddings in the park today when we went for a walk. The limo’s were decorated with roses & sprays of flowers !
The Olympics also start today, every channel on TV is caring it but not in English of course ! The park down from us also had fireworks until late in the night, we didnt walk ther tonight though. Tyler went to bed about 9pm but was up at 12ish most of the night !! so im tired again..he has felt fine & showing no ill effects from his alst treatment. His next spinal will be on Monday then the last one the following Monday so we will have qutie a bit of free time until we leave to come home. That makes it hard to pass the time when we are so ready to go !!! One of the kids that is here with CP for treatment has a birthday on the 10th so we are planning a birthday party for him which everyone is so excited about !!! a celebration & cake & ice cream…
August 9th, 2008
Today is a lazy day !! Since we had a treatment yesterday we are laying low, and with the Olympics to start tomorrow we have been advised for safety issues they would rather us not be roaming around, more so in downtown areas !!! A few braved it anyone with the driver today, we did go to an international buffet hoping to get a taste of american food……WRONG..ive not seen anything in that place in america !!!!! Ox tail stir fry, duck tongue stir fry ??????? i ate lettuce a piece of bread & drank coffee…we were all disapointed !! You’d think we would have learned by now there is NO food in this place we will eat !!! I will be sticking to my food from the american store until we leave.
Tyler slept last night from about midnight until 5 am so that wasnt to bad, he seems well today & has not pain or problems !!! We can be sure to thank the twins from school for teaching him their scream before we came !!! Its cute but good lord !!!! If i havent mentioned it yet everyone here honks their horns constantly, there are no real lanes ..no lights..no traffic signs or speed limit signs that weve seen !!! so now in a cab if they honk..tyler screams that high pitch scream then burst out laughing..i know one cab driver had to go home & change pants im quite sure !!!
I got his schedule today & he will get another treatment on the next 2 mondays then we are done !!!! I can only hope the last 2 are as good as yesterday’s..
We have many more going home on Monday tuesday & wednesday this coming week…we are going to miss them so bad too !!!!
The things we wont miss here are : SMELLS..FOOD…being STARED at nearly being killed in cabs or vans…doing our own laundry in the sink, having NO HOT WATER for 5 days now…washing in cold water…and bad diet coke !!!
I talked with Dr Lisa today about tyler and she checked & said she hasnt seen much of a change YET..she said normally it is about 3- 6 months post treatment that we will see the biggest changes. She said although it happens, it has been pretty rare that the babies see a huge change while at the hospital…some of the older kids are seeing a change but they already have some vision before treatment & they can tell you …like with Tyler if he is seeing some small light perception or anything he cant tell us nor would he even understand that he is seeing it. Once back home we hav to really start working with him as if he is sighted so that he LEARNS he has vision..that is the most important part of all of this. He can get vision here, but sight is a learned behavior !!!
I havent seen to much activity outside today as far as security again for the olympics..but im sure tomorrow we will. We are in a suburb of Qingdao so it is 45 mintues to the actual event areas…it is about like driving from conyers to alpharetta…well he is napping again & im going to stretch out a bit too…we may go raom tomorrow if everyone is feeling up to it !! many here have had a flu bug that is going around..isnt that the pits…its already lousy here & then be sick on top of it…im praying i dont get it !!!
More updates later..hope everyone is getting to check out our pics as well !!
http://www.flickr.com/photos/29161304@N07/
hope that link works !!!!
First & last accupuncture for Tyler !!!
August 7th, 2008
Today’s stem cell went MUCH better !!! He was taken down about 2:30 & was back upstairs at 3:30 & was awake & not to cranky. They came in about 20 minutes later & gave her some valium & he was very calm, not out of it just calmer..he still wanted to get up though little stinker but he didnt scream & fight me like before. There was a different person that did the spinals today also & the older 2 that had them said they didnt have any pain from them, so that could be helping Tyler as well. He fell asleep at about 6:30 & is sleeping peacefully at the moment. He is able to get up at 7:30 but probably will sleep a while then he can eat when he gets up, he did have juice though at 5:30 so with his fluids I think he is fine. I think i will get him an icecream for a treat tonight once he wakes up !!!
One of the other girls is heading to the RT so she is going to pick up milk & bread that I am out of so I will not leave the room today !! That is usually how stem cell day goes though !!! Just wanted to let everyone know that this one went fine and I think his last 2 will be a breeze !! lets hope so anyway …good morning to most of you & good night to us !! thanks for your prayers they worked !
Tami & Tyler
August 6th, 2008
Today is our 3rd treament !!! & another spinal !!! He is scheduled for 2:15ish and has his IV in & getting fluids now & asleep again. Please pray that he handles this one better than last week, that was hard on both of us !!! Not much to report so far here, on treatment days its very quite, the halls are full of doctors & nurses but most of the patients are tucked away in their rooms just waiting…& waiting & waiting !!! Im going to go walk for a sec while i can ..after treatment Im int he bed with tyler to make him stay still until his 6 hrs are up !!! talk about a job !!! he is a hand full !!! will report back later tonight after he is out of treament to let you guys know how its going !!! prayers for us to finish with great reuslts & come home soon !!!
Tami & Tyler 
August 6th, 2008
We had another day of outings !!! On the day none of the kids are getting stem cell treatment everyone tries to get out because the day of treatment & several days after you really shouldnt leave the hospital. So today we went with Shel & Macie who leave next week & had to pick up a few last minute things. We took a driver again & had about 12 of us in total. we dropped off some at the zoo and for us that had already gone we went to the beach for an hr. I had the stroller again so couldnt really take it on the beach. Melissa & I walked around & took pics of the thousands of people crowded onto the beach. The sand is much darker than what we see at a Florida beach. the water is so far off the beach you walk way way out to even get to it..then all you see are people standing elbow to elbow in ankle deep water ???????? It also had the familar stench of a sewage plant ?????? After the beach we went to the Jemo again…Shel had a few things to pick up, the Jemo is the place that everyone goes to barter for goods. Anything you can think of from usual souvenir things to jewlrey housewares & clothes. It has about 5 or 6 floors to it & reeks of urine also…parts of it are underground & damp & musty on top of urine smell. I assume since these people have grown up in that they dont even smell it like we do. I thought about it the other night & may have already said this , but it reminds me of what i imagine a litter box unchanged after a year would smell like !!
Although its nasty & smells the people here are very nice, very nice I will have to add….always smiling alot too !! After that we went to jesco or I think we did that first..oh well it all runs together !!! jesco is a mall type store, although you go in & when you find items they take them & give you a ticket & a tag off the clothes then you take that to a central cashier & she rings it all up you pay & then go back to the area you found items & they get them back for you..seems like an awful lot of trouble to me !!! They are so conservative here to you dont get bags, you can buy them ..im talking about like a kroger plastic bag…they dont like trash or waste. They recycle everything ..from food to cans bottles glass….some staying here with family that have a hotel room said every morning they dump alll the room trash on a huge patio & sift through & seperate it all out to recycle !!! We have watched the cleaning people here do that too..wondering if the food we have leftover they take home & eat ? some said yes but I dont know !!
Another full day of being out & it was much hotter today too…so everyone is exhausted again & ready to go back to our home away from home !!!
We get back all wanting a shower, guess what ?? day 3 of no hot water here !!! this happens very often im told too !!! I still think that they cut it off every so many days as a conservation thing..now many others think the same thing !!! because we have hot water in out kitchen just not in anyones bathrooms ???? I took a cold shower because i couldnt sleep knowing how hot it had been the past 2 days & out roaming in the nasty zoo !!!
were off to bed !!! tonight we tyler ate some chicken pasta & he ate real well, I had pizza since most ordered it after being gone all day…i dont like it so i think 3 tries is enough for me…i can eat what i brought from now on !!! tomorrow is stem cell day so we wont leave the hospital for a few days !!! security is also getting tighter with the Olympics approaching !!! we now have guards at the entrance to our hall & we have to check in & out when we leave !!! we dont feel unsafe here at all though..in fact a couple of days ago when tyler was up at 5(his usual) i fed him & took him to the park by myself and it was a nice walk & cool that early in the morning. we got the stare down but that is normal !!!!
August 6th, 2008
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Tyler in his shades ! & a new friend at the mall