Well we had the first spinal injection and it went well. It was done about 7:40 pm and only took 15 mins. and Kendra slept all night. She did not want to get up this morning that’s for sure right along with me. She also woke up at 5:00 am Wednesday for seizure day I though they wouldn’t do the spinal but she only had one seizure which I am hoping is the stem cell working on that. Usually she has 4 to 9 big seizure in a day’s time every 30 days so everyone say a pray that the seizures are coming to a welcome end.
Sophie was here checking in on her all night so that made me get a little sleep. Sophie is a very good nurse here and speaks great english. She is going to try to take Kendra and I to West Lake I guess it’s a hugh visiting place here in China and everyone says how beautiful it is. So I will let you know when we can go, hopefully I will get a lot of pictures. It’s only 30 mins by bus.
Kendra’s hands are also warm today and not purple I will have to see how that holds up with the circulation I don’t know if it is because it’s so warm we will see.
We actually have Saturday and Sunday off so I think me and elmo will certainly be catching up on sleep after one more day of therapy and hopfully she will get rested over the weekend. She is very tired tonight, we both are but we will be home before you know it.
I do hope I get to take Kendra to the West Lake it will be something to remember our trip by beside the beating us up everyday lol.
We I am going now Kendra’s skin looks a little dry so I will give her a bath and cream for sure with PJ and a movie to relax a little tonight. She will be sleeping in 30 seconds or less I bet haha.
Love
Sarah and Kendra
I love you daddy elmo
March 29th, 2007
Sorry but the internet was down for a few days I couldn’t get on.
They ran short on stem cells for everyone and some people were already scheduled to go home so Kendra is waiting until Wednesday. Which is actually tomorrow now lol.
Just finished with supper (no chicken head lol) and Kendra is sleepy already. I gave her a bath early this afternoon after therapy while it was still warm in the room.
We did get to go out for about an hour today for a walk it was about 80 here and everyone still have big sweater and heavy winter coats on. I was sweating in a tank top. I think Kendra enjoyed being out today it was the first we had been on a walk in a day or two. It was raining here.
Martin (PT) likes to sing to Kendra she just study’s him. I sure don’t think she knows what he is singing (in chinese) and I surely don’t either but it sounds nice lol.
One little boy Zackery was making a fuss today in the therapy room Kendra was wrinkling her eye brows down lol it was so funny. He would scream she won’t do it again had a pretty good laugh over that.
Joyce I read your post and I was glad Jackie gave you the blog. And your right I plan to keep a stiff upper lip. I will never give up on Kendra because she isn’t giving up on me.
When I opened the door from our room the next morning after we got here the first thing I saw was a big sign on the wall that said Everyone deserve to have a bright future.
I will keep trying to get Kendra that bright future no matter how many professional tell me to give up on my baby. I would fly into Iraq right now if someone said they may be able to help Kendra.
I know if I was in Kendra’s shoe I would want some crazy person like me trying to help me all they could.
I know a lot of you think I am crazy to fly half way around the world with Kendra by myself but if it means getting Kendra any kind of quality of life I will do it if it is at all possible.
I would fly anywhere, do anything, endure any set of circumstances, for any period of time. And I will knock down anything or anyone in my way. Wow that sounded mean lol.
I am set on helping Kendra all I can for as long as I can. She is my baby no matter how old she gets and I will never give up on trying to give her a life that she deserves to have, just like everyone else. And with Darrin supporting us I feel like there is nothing we can’t do, he’s my rock. Hey where would we be without our elmo.
Kendra is the brave one she has to do all the work and suffer all the pain so the least I can do is support her all I can.
Okay guys climbing off my soap box now.
I will try to email maybe Thursday I don’t think I will get to the computer tomorrow Kendra has to be still after the spinal tomorrow so she doesn’t get a headache so I will just baby her from the room lol.
love
Sarah and Kendra
Love you daddy elmo.
March 27th, 2007
Well Kendra and I did get out this morning we went to the store ourselfves and I got some of the guys to lift Kendra chair over the pillars. I figured while they were just staring at us they should be put to good use.
It’s funny over here they just stop in their tracks all around Kendra wheel chair staring I can’t even hardly get through the store. Kinda makes you wonder where all the children are with handicaps in this country. There are no ramps or anything set up for wheel chairs.
The weather is getting nice here nice very warm out today but it is very muggy. Everyone here still has big coats on so that is a little hard to figure out. I am in no sleeve shirts sweating and they are just looking at me like I am crazy. The fog is so thick here too. At least it might be very warm when I get home.
I saw the post from Jackie I was wondering if she got the blog. I sent it to Jackie and Kate but it bounced back to me I found out so I am glad they have it. Sorry.
Kendra is doing well today very alert in the store wonder if she minds everyone staring at her. It gets on your nerves after awhile. Or maybe she is trying to figure out what they are all looking at lol.
HAPPY BIRTHDAY TO ALL THE TENO’S LOL Hope you all have a great birthday.
Tomorrow is the next stem cell by spinal. I won’t be aloud in the room until after Kendra comes out. That should be the longest 30 min. of my life (AGAIN). But hopefully worth it.
We have a great bunch of mothers here too. They stop by to see if I needed anything today but I already came back from the store. Everyone here has someone with them. I couldn’t figure that one out. I was told that if you brought someone with you you needed a hotel but I guess that is not the case. Once you are here I guess they have to put you up. lol
Well that’s all for today
love
Sarah and Kendra
Love you daddy elmo
March 25th, 2007
Well Kendra had another day of therapy. She was pretty tired today after sleeping quite long last night. So was yawning all morning but she did not nap when I laid her down.
She was still bright today but in speaking with everyone here they think it would be from the acupucture so soon and not the stem cells. What ever the reason it was nice to see her so alert. I think she would have be more alert today but she was very tired. It is only about 4:30 here and she is ready for bed.
It rained today so I wasn’t taking Kendra out to the park this afternoon. I wasn’t sure how cold or wet it was out there even though it stopped raining earlier.
We have our free day tomorrow hopefully it will be nice weather tomorrow.
Monday will be the spinal injection for the stem cells. The spinal injection is suppose to be a lot better with more improvements than the IV so I guess we will see. They are saying most kids do not show improvements until they are home for around 2 months to get back into the swing of things at home. But I guess that makes sense it told Kendra longer to adjust to the time change here and she is sleeping a lot longer. I think she would sleep 15 hours if I did not wake her up for her 8 am therapy. But I guess the rest will do her a lot of good.
Well thats all for today. I will write about the adventure out for Sunday lol.
Love
Sarah and Kendra
I love you daddy elmo
March 24th, 2007
Well therapy went well today. Kendra had a very very good day. She was looking all around and make great eye contact with who every was talking to her. I am hoping this continues tomorrow and wasn’t a one day thing.
It is very hard for Chinese to say Kendra’s name. It kinda comes out like Ken JA WA it sounds pretty funny but Kendra seems to know that they are talking to her. I try to tell them her nick name was elmo but that didn’t go anywhere lol.
The electric stimulation machine will not work at home. I did email Mike at Burley’s and he said they are at 50 cycle 220 volts here. They are checking with the company to see what it would cost to make one for 110 volts so I can use it at home should know something next week.
Kendra wants to go to bed already I was trying to keep her up a little longer so she wouldn’t be awake real early. But of course I have been waking her up even after she went to sleep at 7 or 6:30 so she is getting lots of sleep.
The nurse came in last night around 8:30 pm to see if Kendra had made any improvements but I told her Kendra was already sleeping she looked very surprised. I told her come back tomorrow lol. She stood there for a little awhile and finally left. Go now sleeping. lol
Well I guess that’s all for today
love
Sarah and Kendra
Love you daddy elmo
March 23rd, 2007
Well we survived one week on the other side of the world.
Kendra had a full day of therapy again it went pretty well. I think she is getting used to have the needles for the acupucture she only fussed a little today. Martin (PT) said Kendra looked like she wanted to punch him lol.
The electrical simulation seems to help quit alot for the tightness. I don’t know if the machine will work in USA I already blew up the grinder, hair blower and melted the tip off the curling iron. I believe there is a big difference in the electric here (no kidding). I have to try to find out what the ratings are here verses home to see if I can even use the machine if I get one.
There is only plug in my room that I plugged the cell into that didn’t blow (thank god) but it must be a special adaptor. Wished I would have know that before I ruined the rest of the things I brought. lol
After all the therapy we went to the park. It was quit an adventure crossing the street here. I waited until the light turned red the little green walking man was on started across and guess what the car don’t believe in stopping for the red lights they just beep the horn and keep going kinda like the Dom Rep. So we made like frogger and finally made it to the park. There wasn’t much to do there but they had some interesting plants and trees growing. Most of the people were doing there laundry in the river. They also had a lot of greens (lettuce etc) washing in the creek too they hand it on the side to dry before they sell it on the street.
I was wondering if when I send the laundry out if they don’t just take it across the street to the creek. Or maybe I don’t wanta know. It does look really clean when it comes back so I’m good with that.
Kendra is sitting here with me she look really tired must have been the fresh air. It was pretty warm out today the breeze was a little chilly I took a blanket for Kendra. So we had a nice hour or so to take away from all the work.
Well I guess I will get Kendra ready for bed, maybe watch a movie but she can’t seem to stay awake past 8 lol.
Love
Sarah and Kendra
Love you daddy elmo
March 22nd, 2007
almost forgot you guys are going to love this ordered fried chicken – eating it – tasting pretty good until I got to the head yes the head they cooked. laying right on the plate with the rest of the fried chicken – eye ball fell on the plate had the beak in my hand. good diet plan
sarah and kendra
March 20th, 2007
Hi gang
All went well with the stem cell treatment. Kendra did well with it and not even a fever. Her next stem cell will be a spinal injection which is more powerful than the IV next Monday.
She went to sleep 6:30 so she was pretty tired. We had a full day of therapy today also. I may be able to buy one of the electrical stimulation machine here to take home. The cost is 1200 RBM which is only about 100 american dollars seem pretty wild the machine back home is very very expensive. So this may work out for us.
Love all the comments I cannot answer them all but you guy have some pretty smart things to say lol.
We had a guy on the roof of the hospital today he was wanting to jump and of course his feet was hanging almost directly over my window. I believe I spoke to him in the hall right before he sure looked nervous but I just thought he couldn’t understand english so I had the nurse lock my door before I went for a little walk outside. Next thing I know everyone outside the hospital is looking up, the cop and fire men show up it was pretty wild. But they did get him down before he jumped. His son was just killed and his wife was in the emergency room because she tried to kill herself so it was quit a mess.
Well thats all for today going to get elmo ready for bed.
Love
Sarah and Kendra
love you daddy elmo
March 20th, 2007
Talked to the doctors today of course they didn’t have anything new about Kendra’s condition but they have seen great improvements in kids like Kendra that have been here before. So I thought that sounded incouraging.
Kendra’s treatment is at 2:50 today we have about 2 hours to go. They are going to do an IV stem cell first instead of a spinal to see how that works out. So it won’t be long until we have the first treatment.
We are continuing with the PT, electrical situlation today, oh and lets not forget the acupucture. Kendra does seem a little brighter today so I don’t know if it’s from the therapy or getting use to the time change. But either way she is having a good day, also not as tight today and her vision is quite good today.
No crazy advantures to report today but everyone did stop and stare at Kendra and I when we were out. I think it was because I have yellow hair and I look very tall lol.
Well until tomorrow
Love
Sarah and Kendra
love you daddy – elmo
March 19th, 2007
Well I have been enjoying all the comments from everyone. I read them to Kendra.
Sunday is our free day over here. They made a schedule up for us so I know where I am suppose to go and what time. I think it was a communication cap with the meeting with the doctors, must be Monday lol.
You would all be surprise what you can communicate with gestures lol. It has been quite interesting over here.
I went to the supermarket, they have big stone pillars around the store to the bikes and motor bikes cannot get in and I had to lift the wheelchair and Kendra over the top. I was glad Wendy (Kendra’s guide) was there to help. I surely would be worry about what I brought back for us for lunch and supper lol. I think we did pretty well.
Kendra doesn’t like the food here so much so I was trying to get american food. Did get potatoes and things like that so I can mix and match a little.
I am not sure if Wendy will be with us the whole time we are here but I am trying to find out everything I can while she is around.
Kendra did sleep for 12 hours Saturday into Sunday morning and of course I was poking at her lol. She was really tired she seems rested today.
We do have a tv in our room but I can’t really figure out what they are saying lol. Somethings I can pick up on but some not that much. I found out today they have american movies at the nurses station so maybe me and Kendra can watch a movie tonight.
I forgot to post about the little pillow they had made for Kendra when we got here little pink bunny pillow and they had a sign made with her name on it already outside the room with flowers on it. And of course Kendra remain the princess even in China go figure lol.
All the doctors here are mostly real young and so are the therapist. Martin is Kendra’s therapist he is also is ahead of the Phyiscal therapy department.
Well time to give Kendra a drink I will post again later.
Love
Sarah and Kendra (elmo) love you daddy
March 18th, 2007
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