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.
Sunday, April 27, 2008
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.
Monday, April 21, 2008
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.
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..."
Thursday, April 10, 2008
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 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.
-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
Tatyanna's wish
Once we return from China, Tatyanna will welcome a pony of her very own in our family.
Yes, I know that's all western gear that my girl is picking out. It's her wish afterall. :)
Tuesday, March 18, 2008
Red wine, guitar hero and a whole lotta prayer...
I've been asked several times over the last few weeks how it is that we are coping. To be honest, there is no answer to that question. As one mom who has walked this road before me said, "It's not like we have a choice. You do what you have to do." You love your child and because of that, you simply keep going, finding strength to do what needs to be done and learning to ignore the things that don't. I don't think that we are any stronger than anyone else or able, in some pre-ordained way, to handle things any better than the next person. I think that it comes down to the simple fact that most people have never been tried, have never experienced the unthinkable and therefore just don't realize the depth of the their own fortitude.
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.
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
Every time a bell rings...
I thought it was going to be simple. Go in, take a single photo of each child for their passport and leave. Sounds easy... right? I timed the trip for when each child should be at their relative best, plied them with the elusive gold known as a happy meal and promises of time in the toy isle and then headed to the Walmart photographer to get the necessary task done. Never did I expect that the years spent unconsciously conditioning my children would come back to haunt me. Like a pair of well trained Pavlovian dogs, every time the photographer stood behind the camera the girls would smile. Have you ever tried to convince a child, particularly a child (read: Lexi) who is thrilled with the fact that they have suddenly become a pint sized celebrity with their own personal paparazzi, not to smile? It's extremely difficult, let me tell you. Because smiling is absolutely not allowed on passport photos, Trent, the photographer and I kept the fellow patrons thoroughly amused with our antics. We tried playing "happy face..sad face.." We tried holding their lips together and then quickly ducking away. At one point, I thought I had a brilliant idea and we all started humming. It sounds like a good idea...doesn't it? I thought so too! Unfortunately, the girls did not agree. Lexi, looked us like we were completely insane, and stated singing. After all, why hum when you know the words? Tatyanna, despite her relatively chipper demeanor, was having a bad day seizure wise so when her turn came I sat, ducked below the camera's line of sight, holding on to her midsection to keep her safely on the stool while Trent and the photographer tried to work their magic. They danced around holding stuffed cats and bunnies to keep her attention and she pulled my hair and tried desparately to thwart my attempts to keep her stationary. It was not pretty.
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.
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
Has it really only been 3 weeks? A mere 20 days since our lives were shaken up and turned upside down; never to be the same again? I feel as though I've aged 30 years in that short time. Nothing is the same. The world is different, my perspective permanently altered. Small things are inconsequential. Moments that once seemed mundane are now carefully preserved, tucked away and hidden in the dark recesses of my mind. It's funny, everything has changed and yet nothing is different. Housework needs to be done, groceries need to be bought. Life goes on. And, even though there could be so much sadness and despair, there isn't. Our house is full of love, laughter and hope. To be honest, it's the very least we can do for her.
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.
***
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
perspective of the 2 year old variety
Tatyanna (gleefully sending her plush dumbo through a series of gravity defying loops and dives) - Look!! Dumbo flying!!!
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.
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
randomness....
It's underway. Our massive fundraising campaign has begun. The trust account has been set up, the date for the social has been confirmed and a local printing company (Webber for you locals....please use them for your business as they rock!) has offered to print up anything that we need....for free! While I realize that it probably costs them very little, it would have cost us $250 for 250 full colour pamphlets at Staples or around $200 at a different quick print place. Webber didn't hesitate, they simply grabbed the original copy, put it on their copier, selected the best paper and told us to grab coffee or something while we waited. Trent and I kept waiting for the catch, thinking that perhaps they would want the "at cost value" to be reimbursed or some advertising or something. The fact that they just printed everything for free and then offered to do more as needed is extremely appreciated. To be honest, I'm stunned with the reaction that our situation is having on people. I'm not really sure what I expected but the willingness of people from all over to do whatever they can has left me feeling that perhaps there is some good in humanity after all.
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.
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
Happy Birthday #5
Happy birthday my sweet girl! It's hard to believe that 5 years ago today your daddy was telling me to "Try harder!!" as Star Trek was only 45 minutes away. You were a good girl and came with plenty of time to spare but the moment he laid eyes on you, all thoughts of Borg and deep space were instantly vaporized. The midwives only stayed a short while and then left us to get to know you and start our life as a family together. Who would have thought that years later we would be where we are now. It's been a bumpy road kiddo and you have endured far more than your fair share of hardships but you are a fighter with that never say quit attitude - unfortunately that also extends over to things like spreading peanut butter on the tv and emptying the pantry. You never do things "little" and it's that all or none, go hard or go home spirit that has kept you going thus far. Even when things are rough, you always have a smile or a giggle and a belief that hugs can truly make things better.
You have taught me so much over the course of your life. Because of you I see the world differently. You have taught me that sometimes it's the little things that are important and that it's ok to simply live in the present. Forget worrying about tomorrow but rather make each moment count as it comes.
I love you to pieces my girl and pray every day that tomorrow will be a little bit brighter for everyone.
Saturday, February 23, 2008
Wondering.....
If my family had to get hit with some life altering event that has long shot odds, why couldn't we just win the lottery or something???
Tuesday, February 19, 2008
There is really nothing that can prepare you to hear that your 4 year old daughter is never going to grow up. There will be no sleepovers with friends, no shopping for prom dresses or sharing motherly wisdom. There will be nothing but memories of a valiant little girl who fought so hard and lost so much.
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.
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
It lurks in the dark recesses of my mind, whispering to me. Taunting me with the promise of knowledge it knows I crave. I can see the name written in bold letters but I dare not say it aloud. I won't give in. Any satisfaction that can come of doing too much research at this point is not worth the weeks of anxiety that would surely follow. I'm not usually like this, but the stakes are different now. I've done a preliminary consult with dr.Google. My suspicions were confirmed. The syndome in question is progressive, a one-way ticket with only a modicum of hope that its onslought may be slowed. I feel weak, nauseauted, impotent. How does one even begin to fight a battle that cannot be won?
Monday, January 28, 2008
Tonight the temperature is supposed to drop down to a completely inhumane -41 C. That rather conveniently works out to -41 F for you American folk. With the windchill, when I get up at 5:00 tomorrow morning the temperature is supposed to feel like -57 C or -70 F. What happened to global warming? I'm thinking that a resurgence of 80's hair is in order just to set things straight.
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.
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
Celebrating a minor victory with commercialism and zoodles
It's been like night and day. In the last couple of days there have been no major seizures and her balance and co-ordination are vastly improved. Not what the average person might consider "normal" but in this house, it's huge! Tatyanna has been able to go up and down stairs, sit on a chair without falling and eat.....with utensils (sort of). For the moment, the combination of Topomax and Klonopin seem to be working and it is giving everyone a much needed reprieve.
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.
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
the new normal
At what point do you realize that your life has changed so significantly that it can never go back to the way that it was. Does it happen with a sudden crashing event or are the changes so insidious that you don't truly realize the extent to which your life has changed until something forces you to look back, to revisit what your normal was. Once you arrive at this new state of being, do you ever get used to it?
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!
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
Tenacity, resilience and other big words
You've got to admire the fortitude of little kids. They have this insane ability to take whatever abuse life throws at them and keep on going without ever thinking of quitting. They rarely complain or ask "why me and not the other guy?" They simply deal and move on. This ability seems to be inversely related to ones age and decreases steadily as you get older.
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.
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
It was fun while it lasted
We knew that it probably wouldn't last forever and that the medication she is on generally works really well for a short time but to be honest I didn't expect to go from fairly decent seizure control to what now seems like one non-stop drop attack. At the moment she is safely ensconced in her kid sized recliner snuggled up with her plush horse blanket and a stack of movies. As much as I dislike allowing her to watch so much t.v. it s the only thing that we can do for her right now. The moment she starts to move she usually also starts seizing and hits the floor. I've brushed the dust off my patented "dive across the floor before her head hits it" move with fairly decent success. It's impressive really, enough to make the most self respecting ninja....or beach volley ball player jealous.
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.
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.
Tuesday, December 18, 2007
I keep meaning to post an update about the MRI experience but somehow life seems to get in the way and I get dragged away from the computer, leaving a fragment of an entry that invariably gets deleted a short time later. I have however, finished moving the remainder of this blog from lj. It's taken a while but I believe that it is finally here in its entirety.
The MRI went well. I am thinking that they don't get too many children in that particular department and Tatyanna was loaded up with stickers and sparkly plastic bracelets before the procedure even started. Watching them set up was also interesting as anything metal couldn't be anywhere near the MRI machine due to the fact that it's pretty much a giant magnet. The whole room was a flurry of activity as various anaesthetic equipment parts were traded off for different pieces that were made from either aluminum or plastic. Longer tubing had to be found which sparked a debate as the MRI department felt that anesthesiology should have said tubing and anesthesiology was positive that MRI should have it. I believe that it was eventually found in a completely unrelated department. The paper work portion was also interesting and Trent and I kept our selves amused by answering the various questions on Tatyanna's behalf.....any tattooes, shrapnel, piercings of the illicit nature and the like. By the time that things were ready to go, Tatyanna was so bored with sitting in the "staging" area that she was only too happy to go with a random nurse to "check out something new". I must admit that I do feel a pang of guilt over this part and I try not to think about how it was for her when they put her out because in the end, there were no lasting ill effects. With Tatyanna it is really difficult to determine how much she processes and how much she remembers. She doesn't seem scarred or unduly traumatized by the ordeal so I'll go with that.
The whole procedure lasted only 45 minutes or so. Just long enough for Trent and I to run and grab a much needed caffeine fix and get back to the waiting area. We heard her howling before we were finished the coffee and as uncomfortable as it is listening to your child cry and not being able to do anything about it, it was kind of reassuring knowing that she came out of it OK. I have watched one too many House episodes to take that fact for granted.
Once we left the MRI department she spent another hour in recovery, was given several more stickers and bracelets and sent to pediatrics for more monitoring. After a 45 minute sleep, she woke up as if nothing had happened and demanded to go to the mall and eat fries.
Fast forward one week......the results came in and were completely normal. This has surprised pretty much all the professionals that have been involved with Tatyanna thus far. Nobody was expecting normal. While the results are reassuring in that we know there are no tumours or structural abnormalities, it leaves a tonne of questions as to what exactly is going on.
The MRI went well. I am thinking that they don't get too many children in that particular department and Tatyanna was loaded up with stickers and sparkly plastic bracelets before the procedure even started. Watching them set up was also interesting as anything metal couldn't be anywhere near the MRI machine due to the fact that it's pretty much a giant magnet. The whole room was a flurry of activity as various anaesthetic equipment parts were traded off for different pieces that were made from either aluminum or plastic. Longer tubing had to be found which sparked a debate as the MRI department felt that anesthesiology should have said tubing and anesthesiology was positive that MRI should have it. I believe that it was eventually found in a completely unrelated department. The paper work portion was also interesting and Trent and I kept our selves amused by answering the various questions on Tatyanna's behalf.....any tattooes, shrapnel, piercings of the illicit nature and the like. By the time that things were ready to go, Tatyanna was so bored with sitting in the "staging" area that she was only too happy to go with a random nurse to "check out something new". I must admit that I do feel a pang of guilt over this part and I try not to think about how it was for her when they put her out because in the end, there were no lasting ill effects. With Tatyanna it is really difficult to determine how much she processes and how much she remembers. She doesn't seem scarred or unduly traumatized by the ordeal so I'll go with that.
The whole procedure lasted only 45 minutes or so. Just long enough for Trent and I to run and grab a much needed caffeine fix and get back to the waiting area. We heard her howling before we were finished the coffee and as uncomfortable as it is listening to your child cry and not being able to do anything about it, it was kind of reassuring knowing that she came out of it OK. I have watched one too many House episodes to take that fact for granted.
Once we left the MRI department she spent another hour in recovery, was given several more stickers and bracelets and sent to pediatrics for more monitoring. After a 45 minute sleep, she woke up as if nothing had happened and demanded to go to the mall and eat fries.
*****
Fast forward one week......the results came in and were completely normal. This has surprised pretty much all the professionals that have been involved with Tatyanna thus far. Nobody was expecting normal. While the results are reassuring in that we know there are no tumours or structural abnormalities, it leaves a tonne of questions as to what exactly is going on.
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