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. That in itself is nothing short of miraculous.

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.

Since diagnoses are kind of like Lay's potato chips, in that you can never have just one, Yanna's recent trip to the pediatrician yielded us with another diagnosis....epilepsy. The EEG report indicated that she has been suffering from left side posterior temporal and occipital complex partial seizures. Try saying that one 5 times quickly. While it wasn't exactly what we were hoping to hear, it didn't come as a surprise either. And because seizuring brains are not happy brains, she was given a prescription for Tegretol in an attempt to control the irregular electrical activity. The pediatrician admitted that he wasn't entirely thrilled with this diagnosis and felt that she could potentially be difficult to treat. Not exactly words every mom hopes to hear. Given the nature of the seizure activity and the fact that they are occurring in two different lobes of her brain, the chances of being able to control them in the long term with just one medication is extremely small. We are probably looking at using a combination of ever changing drugs to keep the seizures at bay. It's funny, in the doctor's office, I went into my old "nursing student mode". I asked my questions, got the treatment plan and left the office planning to consult with Dr. Google and numerous other more reliable medical sources once I arrived home. There was no emotional response. It was what it was...could be better could be worse. It wasn't until that evening when I picked up the bottle filled with tiny white pills that the impact of everything really hit. My hands were literally shaking as I handed her the first of what will be many and encouraged her to chew it up in a voice that overly cheerful. Normally I try to treat things as naturally as possible. The human body has amazing healing capabilities and it drives me nuts when people run to the pharmacy for antibiotics or pills for every single ailment. I would prefer to seek the advise of a homeopath before a standard western physician but this time, I feel that I have no real choice. There are no effective natural treatments. There is no "wait and see". There are no herbal remedies with a minimum of side effects. I have no choice but to take my daughter and embark on a sea of chemical cocktails and hope for the best. The thing that pains me the most is that this shitty alternative is the best I can offer my little girl.

And on a completely different note, we are now entering the fun-filled, always entertaining potty learning stage again. Good times to be sure...filled with many stories perfect for blackmailing unruly teenagers. Tonight Lexi announced that she had to "go potty" and quickly made her way to the fancy kid sized, music playing potty sitting on the deck. I've never used one of these with previous kids and kind of think they're silly, but at 20lbs soaking wet, Lexi could pretty much swim in a standard size toilet. After a few minutes I could hear her jump up and say in very animated voice "Yay! I did it, I did it! I pooped onna potty!!" and before I could even turn from the stove where I was making dinner she ran over, held up her hand and announced, "SEE??!!"

I'm normally a fairly relaxed, no panic sort of person but I have to admit that the sound of T thumping down the stairs followed by the words, "OMG I think there's something really wrong with yanna!!!" did incite something that could be called panic. It was that sort of icy feeling that washes over you followed by the sensation that your stomach has hit the floor and your heart is somewhere in the vicinity of your throat. It's highly unpleasant. But as a mom of 4, I have learned that no matter how anxious you feel, it's usually counter-productive to allow the kids to become aware of said emotions. I calmly turned around and noticed immediately on first glance that yes, there was something very wrong. Yanna's entire left side was completley paralyzed. Fighting the urge to panic suddenly becomes a little more difficult when you're wondering if your 4 year has had a stroke. We quickly got everyone loaded into the truck to make the 20 minute drive to the ER. Yanna, oddly was completely oblivious to the fact that her body had suddenly declared mutiny on her and kept asking (in slurred speech eerily reminiscent of T's grandma who is suffering from ALS) if we could "Go park!!!" and "Get icecream!!!" She also wondered if we could go to town and buy horses. Perhaps it's the fact that she has autism, I don't know, but the potential severity of the situation was completely lost on her and she was just happy to be going on a truck ride to town. It was kind of funny really. Once at the hospital we were seen by several doctors and nurses. During the time there she gradually regained all her senses/abilities and by the time her own pediatrician came down, she was attempting to swing tarzan like from the curtains. By the end of the morning it was determined that this just another complex migraine spell. Apparently complex migraines can also cause hemiparesis. I must say that for once I am completely relieved with a rather anti-climactic ending. K and I are currently in the middle of a battle of the desktops. This means that when one of us is using the computer we must change the desktop of the other person's settings to something that generally involves rather crude humour or good natured teasing. Various animal butts as well as name calling stick people have been the rule but I am hoping to expand. Unfortunately I have been made aware that my 10 year old is considerably more compute savvy than I gave him credit for and I am quickly getting the feeling that I just might be fighting a losing battle.

like trying to put a billy goat into a shopping bag

I should have know that it wasn't going to work. After a week of increasing seizure activity, we finally got a call from the EEG department. The lady on the phone suggested that they like to schedule the pre-school appointments for the afternoon because that is when they nap. Umm....right. I tried to explain to her that my daughter does not sleep and runs around like a weasel on speed until her battery dies around midnight. The receptionist did not believe me, brushed off my concerns with a "I'm sure it will be fine, we'll see what we can do." and scheduled the appointment for 2:00. We showed up at the hospital at 1:45 as suggested and proceeded to wait for 45 minutes. As the seconds ticked by you could see Yanna start to unravel. The novelty of sitting on each and every chair in the waiting area only lasts for so long. By the time we finally got called in I was peeling her off the walls and dragging out of the ornamental trees. It wasn't pretty. Once in the appropriate room, I was told that she would have to lay still for 25 minutes without moving. I think I might have laughed at the guy at this point. He, being the astute, EEG tech quickly realized that this really wasn't going to work. It might have been the fact that Yanna was trying to jump off the bed yelling "I NO SLEEP!!!!!" but I could be wrong. Needless to say, we had to come up with plan B. "We deal with "those types' of kids lots" he said (which didn't win him point in my books) "and it never works with "them". " He then apologized that they had even tried to set up the appointment for 2:00 at all. The plan B is that we reschedule for tuesday at 9 am, keep her up as late as possible and then wake her up at 4am. Hopefully by 9:00 she will be tired and more receptive to the mild sedative they are allowed to give. Again, I am skeptical as nothing 'mild" seems to knock her out. Not even the prescription hydroxyzine slows her down. The energizer bunny has nothing on my girl. It should be interesting to see how this works.

For the past two years T and I have known that there is something different with Yanna. Although everyone around us has tried to provide reassurance that she's fine- just a little different, there's always been a lurking suspicion that things go a little deeper than that. While no parent wants to admit that there is something wrong with their child, there comes a time when you have to take steps to determine what the problem is and how to accept and deal with it. After having numerous screenings done and a visit to Dr. Elves, we have a tentative diagnosis of Pervasive Developmental Disorder-not otherwise specified (PDD-NOS) which is simply a label that fits in with an array of disorders on the Autism Spectrum. Yanna is somewhere on the higher functioning end of the spectrum. She has most of the diagnostic criteria, but not all of them. As much as I hate labels, in some way it comes as a relief. For a long time time I have wracked my brain wondering what I did wrong during the pregnancy and the months following or what I could have done differently. Was it the fall in the playground, or the time she ran into a wall at grandmas?? Or maybe some random medication that I took during pregnancy or while nursing? I even wondered if I was simply getting the parenting thing all wrong. It was nice to hear the doctor say that I'm doing the right thing, and this isn't any of my doing. That it is simply because her brain is wired differently than that of most people. Where we go from here, I'm not so sure. She's now on a waiting list for speech therapy as well as occupational therapy with a doctor recommendation that she get bumped up on the list. I also need to obtain a medical history from my side of the family which I'm kind of dreading as I haven spoken to my birth family since my wedding. This will have to be carefully planned as I'm pretty sure that calling them will be on the awkward site, particularly since they don't know we've moved back.....or even had Lex yet. I probably should have called, or even written, but that's a whole different entry. I've got to admit that I've never missed Edmonton and my group of educated, like minded "Friday moms" more!!!