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.

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.

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!

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.

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.