Saturday, June 14, 2008
Thursday, May 29, 2008
Wednesday, May 28, 2008
Tuesday, May 27, 2008
Friday, May 23, 2008
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!"
Thursday, May 15, 2008
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.
Sunday, May 11, 2008
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.
Sunday, May 4, 2008
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.
Friday, May 2, 2008
Every time I walk by this sign I'm left wondering, "what kind of stuff..."
Sunday, April 27, 2008
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
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.
Monday, April 21, 2008
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.
Thursday, April 10, 2008
-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 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. The nurses have been wonderful and work 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 9, 2008
Friday, March 28, 2008
Tuesday, March 18, 2008
Most of the time, I try to remain upbeat but I would be lying if I told you that it is always this way. There are moments when I am caught unguarded and can feel it steal over me, wrapping it's icy tentacles around my chest. A sense of fear and loss that is so primal that the breath gets caught in my throat and the blood start to leave my head. I know what we're up against. I know what will happen if the treatments don't work, if a cure is not to be found. But, I've also seen what happens to the morale of those around me if I stumble or cracks begin to appear in the facade of strength that I've created. And so, I try to celebrate the little moments, to take joy in the small things- because if things go bad, there will be plenty of time for grief then.
Thursday, March 13, 2008
In the end, we have photos of two girls looking kind of confused and slightly amused that may or may not pass inspection at the passport office tomorrow and photos of two parents looking completely disheveled and more than a little frazzled. I'm thinking that when the time comes to present said passports at the airport, after lugging several suitcases, carry-ons and two cranky pre-schoolers who hate to travel, the likeness will be unmistakable.
Monday, March 10, 2008
This morning we got the news we had been waiting for. I coudn't sleep. I knew the email was coming and I lay awake in the darkness of the early hours waiting for the familiar sound of the computer signalling the arrival of new mail. Although I didn't know if it was good news or bad, I wanted to read it the moment it arrived. I read the words and reread them, scarcely able to comprehend the meaning. "good news......your daughter's a suitable candidate......" We're going to China!!! I know that it's not a cure, but at the moment, it's all we've got.
Thursday, March 6, 2008
Me (because I'm a mom and as such like to state the obvious and then ask dumb questions about it) - Wow, look at that! Dumbo is flying! Is he using his big ears?
Lexi (interupting with all the disgust and self importance that can be mustered by a 2 year old) - No! He has a flying mouse. (this is followed up by the "are you stupid?" look)
Hmm. Maybe we had it wrong all along. Maybe it has nothing to do with the ears. Maybe it's really the mouse that somehow imbues its magical powers upon a poor deformed elephant and gives it proxy flying abilities. I've got to say, I've never seen it quite like that before.
Wednesday, March 5, 2008
Today I took the forms from Children's Wish Foundation to Tatyanna's pediatrician to be signed. There's a large spot for the dr. to fill in with a heading that goes something like "In what way do you feel that the patient's diagnosis is life threatening." It should be interesting to see what he writes. I'm thinking that "see diagnosis...'nuff said" should probably be sufficient. It's kind of surreal to be honest. Today, Tatyanna's had a really good day. We ran errands all morning, she played for several hours this afternoon without falling down once and is now sitting in the living room, glass of strawberry milk in hand, watching "the fox and the hound" for the bazillionth time. It's hard to comprehend that it will all just get worse. In some ways, I think that I refuse to believe it. I know what the diagnosis means. I've talked to other parents. I'm not naive to think that it won't happen. But, I don't believe in absolutes either. I have seen the impact that prayer and positive thinking can have. I'm not prepared to give up without a fight. If we lose the battle, there's plenty of time for grief then. In the meantime I will do whatever I can to help keep my little girl as happy and active as possible. Kids are perceptive and nobody can live very long without hope.
Sometimes I wonder if perhaps I should actually use the spell check feature or maybe proof read for errors before I hit the "publish" button but I never do. Sorry and thank you for being so tolerating.
Will winter ever be over? It's March already, I'm ready for bunnies and mud puddles and grass....I'll even be happy to see people wearing crocs. Even big people, who should never wear such heinous footwear.
Thursday, February 28, 2008
Saturday, February 23, 2008
Tuesday, February 19, 2008
Today Trent and I got the bad news we have been waiting for. Tatyannday a was diagnosed as having progressive myoclonic epilepsy also known as Batten's syndrome or Batten Disease (late infantile onset). Our suspicions were confirmed once we arrived at the hospital to find that the neurologist had booked a conference room and was coming in on her off. Things grew more ominous when we were informed that a nurse and social worker/support staff would also be present. While I really wished that I would have better news to share and that the ordeal of the past few weeks could be filed somewhere next to "cancer scare 2007" (yeah i know, I never did tell you about that one) I knew deep down that it wasn't meant to be. I wish somehow that made things easier. At this point I'm numb. I could feel my psyche slide into survival mode as the information was divulged. While I've held my sobbing husband and felt my whole world come crashing down, I have yet to shed a single tear. I know that won't come until later. When all the house is quiet and everyone is asleep. In some ways I hate that I'm like this. Things would be so much easier if I could just let my guard down and allow someone to console me when things get tough but at the same time there's a well-trained part of me that's not willing to let that control go.
Tatyanna my sweet girl you have endured far more than any child should ever have to with more courage than most adults. My heart is breaking and my soul aches. I truly wish that I could make this all go away.
Sunday, February 3, 2008
Monday, January 28, 2008
Why am I venturing forth in such mind numbing, finger freezing conditions? Because we finally, after several months of waiting, have gotten an appointment with the neurologist in the city. I can't help but wish that said appointment could have taken place 2 days ago....when things were melting. Apparently Canada has some bi-polar like tendencies and could probably stand to be medicated.
Friday, January 25, 2008
So how does one celebrate such a monumental occasion? By doing some of Yanna's favourite things of course. For lunch it was Zoodles as there is nothing messier than canned pasta. I truly can not fathom how any one's palate could possible tolerate such a concoction but Tatyanna loves the stuff. On Tuesday night when she was at her worse I made pasta, the real thing, for supper. Because of the seizures and severe ataxia she wasn't able to sit on her own and had to eat while sitting on my lap. She tried so hard to feed herself but between the "jerks" and tremors, very little food made it into her mouth. In fact we were both giggling over the sheer amount of pasta that was covering my lap, hair, the table and floor. It seems odd laughing about such things but sometimes humour is the only way to get through the rough times. Today was a different story entirely and other than the odd wayward hippo or giraffe, most of the noodles made it to her mouth. Once the older two kids were dropped off at their dads for the weekend we decided to do Tatyanna's other favourite thing. Run amok in the mall, look at toys and throw pennies in the fountain. Normally, I truly hate going to the mall but it was nice seeing her actually able to walk down the aisles and take an interest in what was going on around her.
Tuesday, January 22, 2008
Today was probably the worst day by far for Tatyanna. The lines between what was a seizure and what was simply ataxia became so blurred that it was difficult to tell what was going on. She had one complex partial at noon which quickly generalized into a full blown tonic clonic thus cancelling any plans we had of going to her school entrance meeting at the division office. The remainder of the afternoon continued much the same with Yanna so wobbly and "seizurey" (I don't think that's a real word, but it fits so I use it) that she couldn't stay on her feet. We managed to get her into the dr. who added on a new medication to her regime. As someone who likes to treat things as naturally as possible, I find the chemical cocktail necessary to my daughter's survival particularly hard to take. By supper things hadn't improved and we decided that an early bedtime was in her best interest. During the bedtime routine she had the longest seizure ever and had us scrambling to gather things to bundle her in for the drive to emerg. Trips to the emergency room are much more difficult to orchestrate when the mercury plunges to -25C. Just as we were about to head out the door the seizing stopped and although she was definitely postictal, her vitals were all acceptable so we opted to put her to bed with monitoring. The local emergency department has proven on past trips that they are completely clueless when it comes to children and seizures so we felt that risking what would probably be a pointless trip in the freezing cold was just not worth it. (Interestingly, this was also the point that we should have been going to the second slot of the school division meeting. If she didn't want to start school in the fall, I would have been perfectly receptive to a some sort of simple verbal cue as opposed to a day of seizures.) This truly sucks. Do you ever really get used to this? Does watching your child spasm uncontrollably ever get any easier? I wish I had some answers but none seem to be forthcoming.
To top things off, Lexi, my daughter with a flair for the dramatic decided to start running a fever. She never runs just a simple low grade fever. They almost always turn into a night of alternating tylenol with advil and luke warm baths just to keep them within acceptable limits. It's a good thing I got two hours of sleep last night as there will probably be very little tonight. Did I mention that coffee was my best friend? On the upside the older two kids have helped out immensely by not fighting. Miracles, they can happen!
Thursday, January 17, 2008
Case in point, Keirnan, who although he possesses a definite knack for written prose and an uncanny ability to remember even the most obscure details about things such as the mating rituals of the komodo dragon, will never ever have a future in ballet, ninja-ing or anything requiring stealth or grace. It might have something to do with the fact that he is quickly approaching that gawky and awkward phase of preadolescence where his body is growing faster than his brain has realized or maybe he just has big feet with really heavy bones. I don't know. In either case, his stomping throughout the house once in a while results in stubbed toes and bruised knee caps. When this happens, the resulting tirade is one of "Why does this always happen to me!" and "I hate this house!!" "The house is out to get me!!" etc. etc. Although humorous, it's kind of tiring as I have to continually reinforce the message that because the house will probably not be changing any time soon, perhaps Keirnan, himself, should be the one to do some modifications to the way he navigates the dangerous terrain.
Tatyanna on the other hand will sometimes fall more times in an afternoon than I can count. Her shins are perpetually bruised and if she is going through a bad spell, kind of looks like we beat her with a stick. To be truthful, I don't know how she does it. She gets back up every time and just keeps on going. She was carrying and armful of her stuffed ponies across the living room earlier today (all of whom were named white, only one of whom was even partially white) I could see the seizure coming but given my location could only watch as she went down, dropping the ponies everywhere. Within a couple of seconds it was over, she was back on her feet, looking around with a frustrated expression. When asked if she was OK, her reply was simply to sigh and say "My horse, he falled down...again..." and then she was off to gather up the wayward ponies and continue with her game.
I've got to admit that if I were to hit the floor 50 times in a day or drop my food every time I got the the loaded fork anywhere near my mouth I'd probably stay in bed.
Sunday, January 13, 2008
So far we're only noticing 3 different seizure types, complex partials, atonic/drop attacks and myoclonic "jerks". I have my fingers crossed that the dreaded grand mal will not decide to join the fun. While the other seizure types seem to be happening frequently they are over within seconds and she is coherent and not postictal afterwards.
At the moment we are waiting. Her pediatrician advised us to bump up her evening meds for tonight while he consults with the neurologist, who we have yet to see personally, and organizes and urgent EEG.
And so, the fun begins again.