Sunday, April 27, 2008

Some things that I have noted since being here that probably won't appear in any sort of travel guide:

1. Later -this means the person will get on said task immediately and be back before you have time to finish changing your t-shirt

2. Later Later - this is slightly longer than later...could be 15 minutes, could be an hour or two. It's hard to say.

3. I know - said once, it generally means that they do in fact comprehend whatever it is that is being said

4. I know I know - the more times that "I know" is said, the more you can be assured that they really have no idea what you just said. Generally though, the individual will be remembering the sentence and translating it later if possible.

Tuesday, April 22, 2008

A Day in the life

6-8 am - this is quiet time...and the only real time in the day that i can catch up on emails etc. Nurses generally begin their rounds at around 630, cleaning staff is in by 730. The hot water doesn't get turned on until 7 ish so it's often a rush to get showers in for Trent and I between 7 and 730.

7:00 AM - Mmmm....instant coffee. The only real sort of coffee to be found is espresso beverages at the cafe. Nobody drinks perked coffee. It's all instant....and comes complete with "cream" and sugar.
8:00 AM- Morning meds....there is also noon meds...4pm meds...8 pm meds...and IV meds. It's all good fun! (that was sarcasm...trying to convince a 5 year old to take consume a pharmacy a day is a little difficult)
Playing is a good way to start the day! The dr. usually comes in at this point and tries, to no avail, to engage Tatyanna in some form of conversation. The constant poking and prodding has left her a little wary of anyone wearing white. Her usual attitude is very much one of "if I don't look at them or talk to them....maybe they'll just go away" It's a little frustrating for everyone. The dr.s here are amazing! I wish I could bring the medical staff home with me.

930 AM - As soon as Tatyanna leaves for therapy with her dad, it's shower time for Lexi

930 AM - At Occupational Therapy/Speech

Playing with the fish with the OT therapist. OT is Tatyanna's favourite therapy.

1030 AM - Rainy days = much computer playing and TV watching

11:00 AM - Physical therapy. Tatyanna doesn't really like PT as she is made to do things that she doesn't want to do...and always gets sent out with homework.

We still haven't figured out if she's in room 12 or room 21 and we know that is says Tatyanna....we are also fairly certain that what's written after her name reads "the one with the bratty little sister" in Chinese, but we can't be sure.

12:00 - Lunch is generally rice...or noodles...or sometimes, if we are feeling particularly adventurous, rice and noodles.
1:00 pm - Pearl/Hongqio Market - My first kid free moment of the trip thus far! A great many of the buildings here are being renovated or restored for the Olympics. Within a few months the city will be a totally different place. It's kind of fun to watch the transformation!

This is one of the allies that branch off the lane leading to the centre. The lane is truly a fascinating place and seems to be its own micro community. The lady that cleans our room informed me that the second second door in is her home. What are the odds of that happening?! I've got to say that I felt a little strange, but she didn't seem to mind at all.

11:am. & 3:00 pm - "The Food Lady" - She comes around several times a day to see if we want to order anything from the menus seen in her arms. It's interesting to see what we get sometimes as she doesn't speak any English and half the menus are in Chinese. Usually, we just order dinner and make our own breakfast and lunch. Dinner for 4 here generally costs us less than $100 RMB ($15 CAD)

1:00 - 4:00 - Today because I am out, everyone feels sorry for Trent and stops by to help out. These are 2 of our favourite people here and have really gone out of their way for the girls.

6:00 - Dinner! We actually found a menu that said "No MSG" on it. I wouldn't be surprised if this will be our first MSG free meal since we've arrived.

Rice and curried vegetables. Yummo! (Actually, I believe that Rachael Ray is really the only person who can get away with saying that.)

6pm-9pm - IV meds. The time is variable and depends on the number of meds on that particular day and when we chose to have Tatyanna sit quietly. Usually we start earlier in the day as numerous bags of fluid equals numerous trips to the bathroom.

9pm - Once the kids are sleeping, Trent and I pretend to watch T.V. We have the entire series of Firefly as well as Season 3 of the unit. If you watch an episode or two of one, then the other, it's kind of like being at home....sort of.
Cost of cab fare from Tiantan Puhua hospital to the Pearl Market - 13 RMB

Cost of hand carved dragon stamp at market shopt - 55 RMB

Cost of ink to go with hand carved stamp - 10 RMB

Husband's expression when he finds out that you paid a total of 65 RMB when he paid 300 RMB for the same thing 2 days earlier - priceless.

Today I was actually able to leave the centre, sans kids, for the first time ever. To say it felt good would be an understatement. I went to a nearby market with an Australian woman who is here helping her sister for a few days and she taught me the all-important art to bargaining. She is truly the master but by the end of the day, she was impressed with my mad bartering skillz. I've got to say, it was the most fun I've had in a long time and I'm sure that my dreams tonight will be filled with calls of 'lady...hey lady....i have good price, just for you....i offer you good deal..."
A photo heavy "Day in the life" post should be up tomorrow. I can't actually participate in livejournal's ditl community as that particular site is censored by the Chinese government.

Thursday, April 17, 2008

Keeping things updated here and on Tatyanna's site has proven to be more difficult than anticipated....particularly since the computer is serving double duty as the kid's t.v. This weekend there will be more to read here....and maybe some pictures...

Thursday, April 10, 2008

Nothing intelligent here today.....I am much too tired for that...

April 11, 1:05 A.M.

-Did you know that when you go to the blogger homepage to log in, it's actually written in the language of the country that provides the internet service? Fortunately, the layout is the same so navigating my way around wasn't too difficult. This example carries through to the rest of our stay here thus far. Brand names have taken on a whole new level of importance. Coke still looks like Coke even when it's written in Chinese. I can truly appreciate that. It's funny how we often take the ability to read and write for granted. When you become suddenly immersed in a different culture, symbolism, commercial or otherwise, takes on a whole new level of importance. This point really deserves it's own post but there is simply not the energy for that at this time. I have slept a total of 7 hours since we woke up at 5:00am on the morning of the 8th and there is no coffee here. Tomorrow, I will go out and buy myself some coffee....I hope.

-Pizza here is not like pizza at home. It comes with things like broccoli and does not have tomato sauce. It actually has a lovely little side of Heinz ketchup....which Lexi got quite excited about....because in her world, food is simple a side dish to her ketchup.

-Milk comes in bags, with pictures of cute little cows prancing across the surface.

-Tomorrow I get to attempt to explain why there is no way in hell that I will put my child on tegretol again. I will seriously abandon the treatment and go home before I let this happen. My other thought was to simply dump the offending capsule in the toilet and simply say nothing. We'll see what happens I guess. (Tegretol is what Tatyanna was on last summer and it caused a dramatic increase in her seizures)

-China is very much a "dr. knows best" country and although they try to accommodate my requests for things like drug lists and my refusal to administer anything to my child until said list is in my hands, it is something they are not used to.

-Chopsticks are a multipurpose tool. The shower wasn't draining properly this morning and the maintenance guy showed up, chopsticks in hand. Unfortunately they do have their limitations and he was forced to send for more tools to get the job done.

-Tatyanna and Lexi have become instant mini-celebrities and attract a significant amount of attention whenever we go any where outside the room. Actually, the room itself isn't particularly safe and we had a group of nursing students (?) show up to check out the new arrivals. Lexi is currently developing a rather diva like attitude. This will need to be taken care of before it gets any worse. I half expect her to show up with an agent and a ryder with her demands any day now.

-Everyone here is amazingly friendly and helpful. There are no bitchy nurses and they all try really hard to understand what our needs are. I'm not used to this but appreciate it a great deal.

-The only other Canadian family leaves tomorrow. Almost everyone else seems to be either from China or the UK.

Wednesday, April 09, 2008

Just a quick note to let you know that we made it! It's now 3:49 a.m in Beijing but everyone's internal clock reads 2:49 p.m. Jet laggy children are not fun children. I should be able to update more later!

Wednesday, April 02, 2008

Q & A

Just wanting to help clarify a few things....

1. Why China?

At this point in time there is no treatment available in Canada and no upcoming clinical trials for Batten Disease. In the US, they are between trials. In China, what is offered elsewhere as experimental, is considered treatment and therefore available to anyone who can pay for it.

2. Are you sure it's not a scam?

Believe me, we have referenced and cross-referenced the centre in question as much as we possibly can. I have spoken with people who have been there and contacted organizations who I believe are reputable to get their opinion. I'm not one who likes to part ways with my money and the tens of thousands of dollars this treatment costs is not something that I take lightly- especially because it's been given in good faith by so many awesome people.

3. This is a genetic condition....can your other kids have it.....are you having them tested?

This is a question that seems to come up rather frequently. The simple answer is yes...possibly...not at this point. Because my older 2 kids have a different father and are nearing the pre-teen years, there is a slim chance that they could be carriers of the recessive gene that causes Batten Disease. The odds change considerably for my youngest daughter. She has a 25% chance of also having this condition. At this point she has not exhibited any signs and we are hopeful that she has been spared. While having her tested could bring about some relief, we do not feel that it's worth the pain we would experience if she tested positive and we were then forced to sit and wait for the disease to begin to manifest itself. It is easier for us to live with the vague, looming threat that it could happen but might not. She will however need to be tested later on to determine if she is a carrier. The chance of this occurring are considerably higher at 50%.

3. I heard Trent's grandma died of Batten Disease....

This rumour has begun to circulate in a smaller local community and frustrates me to no end on so many levels. I don't particularly enjoy the fact that my daughter has become small town gossip fodder. I also truly hate it when people begin to spread things as fact without verifying their information. Several people worked very hard on a website to help keep people informed but it seems that very few actually click on the "about batten disease" link. Trent's grandma died of ALS and nothing else. Because they are both neurodegenerative conditions they share some similarities. Symptoms of late infantile batten disease occur between the ages of 2 and 4. Children rarely live past 8-12. Trent's grandma was in her 70's......enough said.

4. "I don't see why you need to fund raise, it's not like it's a rare condition or anything. There are 2 kids in Saskatchewan who have it...."

Don't you love small town people with big mouths? I found this one particularly interesting because the family mentioned is also fundraising in their community. While there are 2 children in the neighboring province with Batten Disease and we were saddened to hear the news, the fact that there are a handful of kids in Canada with the condition still classifies it as rare. Because the government offers no real assistance, parents must come up with the funding on their own.

5. Don't you hate airplanes?

Yes, yes I do and the thought of going on a 12 hour flight over a vast body of water disturbs me greatly. But then, I have also lost sleep over things like "Jack Bauer vents"* and Hanta virus, because I'm neurotic like that. Sometimes you just have to suck it up and do what you have to do.

6. Tatyanna's lucky to have parents who are willing to go to those lengths for her...

While these sort of comments leave me feeling sort warm and fuzzy and kind of odd, I really don't understand them. How could we not do what we are doing? How could we not try? How could we look her in the eye knowing we were doing nothing other than simply waiting for the end? If you were to spend a day with her, you'd understand. She's a pretty awesome little kid. I only wish I could do more.

7. Are your older kids o.k. with the fundraising...the trip to china etc.

They know that we are doing for Tatyanna exactly what they would want us to do for them if they were the ones in her position. We are trying to keep them as involved as possible and while having your mom and step-dad gone for 8 weeks won't be easy, they are old enough to understand. Current technology makes it relatively easy to stay in regular contact. Truthfully, sometimes I think they are just excited to see what we will bring them back from China!

*I believe it was in season 3 where a viral agent was released into a hotel through the internal air circulation system. To this day, I still look for the vent type immediately upon entering a hotel room. Fortunately, I have noticed in the many hotels that I have stayed in over the last few years, most have air systems that vent to the outside. Internal vent systems will always be known as "jack bauer vents"