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.

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???

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.

***

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?

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.

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.

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!

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.

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.

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.

".....well, she can be an extremely overwhelming sort of child...."

Hmm, you don't say? This was from a conversation with Tatyanna's occupational therapist, who I'm positive might feel completely in over her head most of the time but does an amazingly remarkable job during their hour together nonetheless. The appointment with the developmental pediatrician was considerably less productive. She started the assessment using all the standardized method of testing and within half an hour could go no farther. She tried doing the usual "copy my drawing" test to which Yanna's response was "draw a horse!!!" she moved on to the block test. Tatyanna felt that she should then make a horse from the blocks. Within half an hour we had to remove Yanna from the room as she was pretty much climbing the walls. The rest of the appointment was spent conducting a patient history. At the end, the ped. announced that she wasn't really sure what was going on as she couldn't fully conduct an assessment and that she wasn't willing to officially diagnose Tatyanna with anything but would refer her to a neurologist, children's special services and the pediatric autism organization. It was entirely frustrating and Trent and I left the office wondering if perhaps she had obtained her credentials from one of those online study institutions. I get a lot of spam in my one discussion forum that promise a PhD in 3 months or your money back. Perhaps those people really can get jobs!!

Ironically, she is closer to being like the old Tatyanna that it doesn't bother me a bit. It's funny how your perspective can change so drastically in such a short time. I would much rather have her tearing apart the house, emptying the pantry and antagonizing her siblings than have her barely able to function as a result of continual seizures and side effects from medication that just isn't working. I realize that this reprieve may be short lived as medications but I will take it and enjoy it.

Another day, another trip to the pediatrician, another medication to try.

Seizure count: lost track after 40 both today and yesterday. *sigh*

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 and 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 crappy alternative is the best I can offer my little girl.

I'm normally a fairly relaxed, no panic sort of person but I have to admit that the sound of Trent 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. 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.

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.

"First day on your new legs?" The comment should have been harmelss enough but for some reason tonight it stung. I walked over to my little girl, helped her up and asked if she was ok. It was the same as so many times on so many days. "I ok" was her answer. The same as always. But she's not ok and it breaks my heart that I can't fix her, that I can't make things better. Some days she falls alot, some days not so much. We think that she's having simple partial seizures but until the EEG no one really knows. I see it in her eyes on the bad days. She'll hold my hand more, and refuse to go up or down the stairs without help. A fall down the hard wooden staircase taught her that lesson. It's interesting how she would quite happily run into traffic without pause but understands the danger of an innocuous set of stairs.