I could feel my heart sink and anxiety start to prickle at the edges of my consciousness. Of course that particular store in this mall had to be right next to the only place that I buy jeans. For a moment I debated going home, destined to spend an eternity borrowing clothes from my older daughter....or at least until she outgrows me (which could be tomorrow at the rate she's going). But, that would be foolish. Living in a relatively rural part of the country means that when you're in the city, you have to shop and normally, that's not such a bad thing. I gave myself a brief pep talk and began pushing Tatyanna's wheel chair with determined steps, hoping beyond anything that she wouldn't notice the sunny, yellow glow emanating from the source of my unease . It used to be her favourite place in the world. When we lived in Edmonton she would spy it from the upper concourse of the mall and make a mad dash for the nearest escalator yelling "I'm going to Build-a-bear....to make-a-bear!!!" She didn't care if she wasn't getting a bear, she just loved the process. The picking of the outer layer, the fluffing machine that stuffed the chosen companion to the perfect level of huggability and the kissing of the heart and making a wish before the new friend was sewn up, ready for dressing. She kissed a lot of hearts. I think most of our menagerie of build-a-bears contains more than one. Her eyes would sparkle as she danced through the store eagerly helping to chose the perfect outfit and accessories. The shoes were her favourite. A girl after my own heart, it didn't matter if they didn't have underwear...the outfit wasn't complete without an awesome (or is it pawsome?) pair of shoes.

I wasn't sure which would be worse, if she saw the store and didn't react at all, or if she did. At first I thought we were going to make it by without incident. Tatyanna's attention was caught by something on the opposing side and it wasn't until we were almost clear that her head turned. A veiled look of recognition crossed her face as she peered hard into the interior of the shop.

"Look! It's Build-a-bear! Wanna go in?" I asked, trying desperately to keep my voice cheery. Drawing on some apparently vast internal reserve of strength we made it past the helpful store staff and down the row of bins full of waiting animals. They finally have the pony. It was only out in select stores during the "old days", and we kept waiting for it's arrival, knowing that it would have been Tatyanna's new favourite. But the release date kept getting pushed back, and then it just didn't matter anymore.

It wasn't until we hit the fluffing machine, with the bin of hearts waiting to be kissed that the sense of loss came crashing in around me. Apparently, while vast, my reserves are also shallow. Tatyanna stared hard at the swirling fluff and I could feel my heart shatter once again. It was as if she was remembering. Remembering a time when things were better, when she could dance and sing and kiss hearts and make wishes. But with the expression of nostalgia there was also confusion. As if those past times were maybe a dream and perhaps never really happened at all. As if she couldn't comprehend how she had gotten from there to here.

It was all I could take, I think I fled the store fast enough that the employees checked for fires and counted their inventory after I left.

I hate Batten Disease. I hate that it is stealing our little girl before our eyes. I hate that remembering the fun times of days gone by is now done with a smile on my lips and tears running down my cheeks. I hate that every day, I have to pick up the pieces of my heart over and over again. But, I do. I hold my head up and keep going. I pick up the pieces and try to make our life the best it can be. Sometimes it works, sometimes I just really want to go back to a time when my little girl could kiss a heart or two.

Pimpin her ride

It was probably one of the more difficult transitions on our journey as parents to a child with a progressive condition. By switching out Tatyanna's stroller for a full fledged wheel chair it seemed that we were finally publicly acknowledging that this was, in fact, a battle we were losing. For a long time I would simply carry Tatyanna wherever we went. The Lightening kids stroller that we were using was uncomfortable for her and had a distinct prima dona preference for only the smoothest of paved surfaces making its usage cumbersome. But, one can only carry their growing 6 year old for so long before you realize the complete ridiculousness of the situation. Although she has yet to weigh anything more than 42 lbs soaking wet, Tatyanna's legs now dangle down to my knees and the once comfortable hip carry, is now anything but. The health of my back also seemed a high price to pay for my own personal sense of pseudo-denial. And so, with much reluctance, we came to the decision that it was definitely time to look into a more conventional method of getting our non mobile child from point a to point b and took Tatyanna's occupational therapist up on her offer to make the referral for wheel chair funding. Once at our local Medichair we were quickly given the specs on a couple of the pint sized models and took them for a "test drive" to determine their suitability for our needs. Once a decision was reached we were asked to chose a colour. I'm not sure why this somehow makes the whole ordeal verge on fun, but it did. After looking at a rainbow of hues and being assured that the chosen chair could be power coated with an entirely different colour if we wished, we decided to go with the stock orange. It seemed bright and funky - a perfect way to honour our daughter's spunky spirit. We also came to the realization that just because it's a wheel chair, doesn't mean that it has to be boring and thus we have started on "operation pimp her ride" in an effort to make it the coolest damn wheelchair a kid could ever have. Kind of a lemons to lemonade thing.

My apologies for the lack of updates on here as of late. The summer went by far to quickly and there weren't nearly enough hours in the day! Tatyanna had a really good summer and will be starting her second week of grade 1 tomorrow. She has an awesome full time aide and an equally amazing teacher who both report that she is doing really well and having a good time in school. She seems to enjoy the interaction with the other kids and especially likes gym class. We have an excellent team of individuals at her school and everyone seems to be on the same wavelength with how her year should go. The main idea is that Tatyanna will have the best year possible and will be included as much as much as she can be with what is going on in her classroom. Gr. 1 is off to a superb start!

For the moment, her condition is relatively stable and we haven't noticed any significant changes since our last trip to China. While she can no longer walk independently and is mostly non-verbal, she doesn't let these things stop her from getting where she wants to go, or from getting her point across!

One of the nice things about moving her updates over to the blogger site is that it makes it so much easier to add pics to the entries. The following photos were taken over the last couple of weeks.

Welcome

Greetings and thanks for coming! This is now the new site for all of Tatyanna's updates etc. Over the last few days the old Tatyanna's Hope website has been completely redone. I hope that you like the changes and new format. There are still a few bugs to work out but for the most part, it is up and running, business as usual. We made the decision to move the regular (ok, semi-regular) updates over to a blogger site so that it is easier to navigate for all of you, easier to update for me...and should allow me to actually post a photo or two every so often. It will also allow people to leave comments, ask questions or easily locate a previously made entry. Please bear with me as there will undoubtedly be a few growing pains as everything gets transferred over.

Tatyanna has been having a good summer. The record-cold temperatures have put a damper on our summer fun but we have still found opportunities for riding her pony and trips to the spray park and playground. Although she is no longer able to climb, Tatyanna still LOVES going down the slides! We are also currently looking into some various physical therapy options as we found that she really benefited from the concentrated PT that she was receiving in China.

going home

As I type this entry, the suitcases are stacked against the wall, waiting for the last of the laundry before they can finally be closed. The dr. has been in with the meds that Tatyanna will need to continue and has authorized the removal of her IV. It's official, we are going home tomorrow. Truthfully, this time I don't have the eager sense of anticipation of last year's departure. While I miss my family and home, the break from reality has been a much needed reprieve. For a few moments I am allowed to have hope, to believe that we can fight the demon that is Batten's. At Tiantan Puhua, we are surrounded by people who want to try, who work incredibly hard and believe that they can make a difference. The results of the last few weeks have far exceeded our expectations, I saw my daughter walk across the room, unsteady, but completely unaided, I heard her say “love you” as she gave me a hug. Those moments alone made the entire trip worth it. To all who have helped make this trip possible and supported us on our journey, we thank you from the bottom of our heart.

In these tough economic times it's important to follow the "3 r's" a little more closely. Buying products that allow for versatility, and are easily re-used can easily help to keep a little more change in your pocket.... and no one seems to have mastered the art of that 2nd "r" quite like the local silk store. Finally, a shirt that the whole family can enjoy:



from the very smallest member

to the largest

Easter eggs.....

Every day we order pretty much the same thing for lunch...some sort of meat, some sort of vegetable and jidan chao fan (egg fried rice). Not exactly adventurous but with 2 little kids, one of whom has certain dietary requirements, playing it safe is sometimes the way to go....at least at the beginning of our trip. Everyday at some random time before lunch, the specified food arrives. We generally request 1200 for delivery but in reality it may appear anywhere from as early as 1045 to 1215. See, there is an element of adventure after all!
On this particular day though, things got a little mixed up....slightly lost in translation and our staple jidan chao fan turned into this:

Truthfully, I have no idea what exactly it is, how the eggs were turned a purplish brown colour or what turned them into a jelly like consistency. Trent and I thought that it seemed a rather fitting mistake given the nature of the day, but the kids? They failed to see the humour.

We are finally here in Beijing! I'm not sure whether I was more excited that the temperature was 27 C when we landed with not a snowbank to be seen or the fact that we survived another landing at the Beijing airport. I have no idea what it is about that landing but it always seems precarious at best. There were actually audible gasps from a majority of the passengers during a couple of moments. Fortunately the landing was even worse on our first trip so I think that I managed to pull it off looking calm and collected.....white knuckles aside.
Once we arrived back at the hospital we were greeted with some excitement from the staff that remembered us from our first trip. I've got to say that it was really nice to come back to a familiar place and within the first hour we were off to the corner store to pick up the kid's favourite snacks and drinks. It's funny, it's been an entire year since we were last here but it doesn't feel like more than a week or two. Here's hoping that the girls will settle in and adjust to a 13 hour difference quickly!

Beijing bound

It's funny how you can be both excited about a trip and dreading all that it entails. In early April we will once again be making the trip to Beijing for a second round of treatment for Tatyanna. Initially our plan was to follow her original doctors to the new hospital that they have recently established. Lured in by the idea of a potential new treatment involving a gene therapy component as well as the shiny newness of the facility, it was an easy sell to a set of desperate parents. Then, as it so often seems to, the proverbial rug was yanked from beneath our feet and we were left wondering if we had made the correct decision after all. The lack of information regarding the new therapy was disconcerting and logically it didn't add up. My slightly unused scientific mind finally started thinking of the right questions and when the answers didn't match up to our satisfaction we really started to wonder if we had made the right choice. After several conversations with respected people in the Batten's community we decided to completely alter our course of action and will be taking Tatyanna back to Tian Tan Puhua. It was not an easy decision but for the first time in the last month, I feel good. All of a sudden there is a sense of peace that things are the way they should be. We know the treatment protocol at Tian Tan and we know the outcome. It's not a cure but the changes that we noticed in Tatyanna were substantial and it went a long way to increase her quality of life over the last year. We are familiar with the staff and the surrounding area. While I agree that there is a time when you should push the envelope, I don't think that for us, this is that time. There's a huge difference between a viable working therapy and something that is still highly experimental. I'm all for trying something new if it makes scientific sense but the new therapy just didn't fall into that category. I do however strongly believe that gene therapy will ultimately be the cure for Batten Disease, I just don't believe that anyone has that cure yet.

Heres lookin' at you kid

This is one of those moments where I, thinking that I had taken a nice "memory photo", put the camera away a few minutes too soon. Right after this shot was taken, Tatyanna, in a moment of unbridled Bovidae adoration, leaned forward, placed both hands on either side of the goat's face and planted a big wet kiss on his lips! Comical does not even begin to describe it. I "kid" you not. Umm...I'll stop now....

We are home!!!! I will update, there will be back entries from my keyboard free period, and photos...but not until the kids are no longer sick with the minor plague that they brought home with them (souvenirs anyone?) and the jet lag has worn off. I thought that we would adjust better this trip to the time difference but 430 this morning found Trent and I making sandwiches in the kitchen.

Gradients of relaxation while travelling

Bejing airport....notsomuch


Vancouver airport....perhaps a slight improvement?

Winnipeg, Sheraton 4 points hotel.....Ahhh....

And then there were 6...

When we left Canada as relatively unseasoned and unpracticed travellers we had a modest 3 suitcases plus carryons in tow. Today, after spending 7 weeks away, we will return home attempting to juggle 6 suitcases. Add that to the carryon baggage and 2 small children and it should be an interesting kind of day. Suitcases...they are like rabbits.

a minor inconvenience

I have come to the conclusion that the keyboard is the most under-rated component of the laptop. Much discussion is given to CPU's, motherboards and the like, but one becomes quickly aware of just how essential a working keyboard is when they are stuck in a foreign country and said component decides to "take its own vacation." Due to our recent mechanical difficulties, this will be the last "in type" update before we arrive home. I will try to provide you with some photo updates over the next couple of days so please feel free to fill in your own stories and captions to go with the pictures. It will probably be more entertaining! I can access email at all the usual addresses but since any responses will either have to be typed on the iPod (and sent when it can get a connection, which is rarely) or by painfully cutting and pasting the letters from other sources (which I have done and can't say that I enjoyed), the chances of you getting a reply will be fairly small. I feel bad about this, really I do and want you to know that I truly appreciate emails and will get back to you as soon as I can.

The good news is, we get to go home early!! Tatyanna had her last injection on Tuesday and as such, we are able to go home on the 27th of May. Because we were expecting to have another 10 days, the weekend will be filled with last minute sight seeing and packing up our room. The girls are more than ready for the trip back to Canada and when Lexi was told that we would be going on a bus ride to the night market this evening, her response was a very emphatic "NO...I'm going home on a plane." To which Tatyanna added "and go to Build-a-Bear!"

lost in translation

It's funny but I don't remember these discs having this title when I bought the same versions in Canada.
For an even funnier and much more extreme example of "interesting" translations,please go here: http://www.rahoi.com/2006/03/may-i-take-your-order/ We have actually seen menus similar to this on a much smaller scale. It keeps things interesting.

It's almost kind of sad how excited we got to see/hear Tatyanna counting again. Prior to our trip to China, I can't remember the last time that she was able to do that.

One year ago, Trent and I stood on the edge of a battle field. Unaware. Oblivious. We naively made plans for a future that was never meant to be and honestly thought that things were starting to look up. Within a month we found ourselves in the very trenches of a battle that we were not prepared to fight.

No one said that parenting was supposed to be easy but some mom's really get a raw deal. To those mom's this is my toast to you, because you truly deserve it. (Feel free to grab the beverage of your choice at this point: juice...water...a nice south African pinotage...tequilla...don't worry about finding the glass, it will be less to wash later)

Here's to all the mom's who have knelt at their child's bedside whispering fervent prayers for a better day

Who are too scared to dream for the future because all that really matters is that they made it through today

To the moms who have held their crying child, stroking the tendrils of damp hair away from their cheeks and wondered if the tears would ever end


and to those who long to hear their child utter a single sound and know that even a cry would be like the sweetest symphony


Here's to the moms who could play connect the dots with the IV scars that cover their child's hands and feet


and know more technical terms and drug interactions than your average med student.

To the mom's who could tell you the days of the week without looking at a calendar....it was written on the weekly pill dispenser, and isn't today PT...it must be Tuesday...

And to those who drive wistfully by playgrounds, wanting nothing more than to spend an afternoon pushing their child on a swing or making castles in the sand.


Here's to the mom's who refuse to quit, who keep pushing, knowing that it isn't because they are particularly strong or even because it's something they want to do,

But because they have to, there simply is no other choice.

And to the mom's with experience, who's babies have long since grown up and have children of their own

Who know that while this isn't their battle, they are there to provide an ear to listen and a shoulder to cry on.

Here's to the moms who have endured more than they ever though possible and know that there is more yet to come

May you find the courage and strength to face each new day and never stop looking for the small miracles


To all of you, Happy Mother's Day.

"I'm going home....I'm going to school to see Keirnan and Skylar!" Lexi emphatically announced as she stood poised at the room door wearing nothing but her sister's pink sneakers and a white plastic shopping bag containing all of her clothes, slung across her back. A magnetic story board with its assortment of princesses and pretty dresses was in one hand and a colourful plastic pony in the other.

I think it's safe to say that she's had enough! I wish I was closer to the camera because that was truly a "kodak moment" Her feelings echo those of everyone around her, but this is only the halfway mark....there are still 4 long weeks to go.

just a couple of photos

This one will be sure to make anyone with any sort of nursing experience cringe. This lovely, and somewhat archaic, glass bottle IV is hung daily with the instruction of "Only half" Once the liquid reaches the halfway mark in the bottle, we then ring the nurses to switch medications. Sometimes they give us a line, sometimes not.


Every time I walk by this sign I'm left wondering, "what kind of stuff..."

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.

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..."