Tuesday, June 26, 2007

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.

Saturday, June 23, 2007

It's a little disconcerting when your almost 2 year old runs into the kitchen while you are sweeping the floor, picks something out of the pile, pops it into her mouth, announces "ooh yummy!" and then runs away. This took about 2 seconds. I didn't have time to react, stop her or say anything about the fact that things found in the garbage shouldn't be considered tasty. Maybe part of me is a little concerned, but I must admit that I'm extremely curious as to what she found. I don't recall seeing anything that could be described as yummy while I was sweeping. Thankfully she has a healthy immune system and we don't have anything toxic in the house. It's funny the difference in response between your first and your fourth kid. If it that had been Keirnan, I probably would have rinsed his mouth out and watched him for signs of the plague that I was sure would follow. With Lex, I'm considerably more relaxed and have learned not to sweat the small stuff.Yanna's EEG was successful. Thanks to much sleep deprivation she was only too happy to sit on my lap and read stories with me while it was being performed. Story might be a more accurate description as we read the same story over, and over.......and over. Now we just have to wait for the results. I love waiting. I'm getting very good at it.

Monday, June 18, 2007

Apparently today is autistic pride day. So....uh....happy autistic pride day- now go and educate yourself . Maybe I should go out and buy a cake or something. You can never have to much cake....or perhaps a nice tiramisu. A little harder to decorate but I believe that it could be done.
Did I ever mention how tired I was of wood tick season? Now that the deer are coming back out of the valley and wandering through the yard to look longingly at our garden and check the integrity of the 6 foot high electric fence, the place is crawling with the suckers (bad pun, i know) A simple trip out to the trampoline, across the neatly shorn yard, can yield 2 or more. I never really had a problem with wood ticks before, but this is getting crazy. Every day I'm picking them off the kids, the dog the deck etc. I grew up on a farm, but I have never seen anything like this. The older kids are thoroughly disgusted...having become rather citified during their formative years and continually ask what the purpose of a wood tick is. I wish I could tell them...because i would really like to know the answer to that one too!
*Edited to add: After a brief seach on ask.com, my quest to find the answer to the purpose of a wood tick has been abandoned. Apparently they have no real purpose.

Friday, June 15, 2007

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.

Saturday, June 09, 2007

just when thought you'd be spared the emotional garbage....

"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. I feel angry. I wish I had pushed things with the dr.s in Edmonton to get a proper diagnosis. I'm angry that a family member never shared her suspicions. It really bothers me that she brings it up after the fact. If she had once mentioned her concerns to me I would have been able to do something. I'm angry with myself. I have a psych degree and 2 1/2 years of nursing. I should have known, but I didn't. When I went to school we were taught about autism-the disorder. The fact that it is a spectrum of disorders with a whole variety of traits was never mentioned. I'm tired. Tired of the sleepless nights. Tired of having little support and no where to turn. Tired of the politics in this town. Tired of the waiting process. We have a tentative, but probable diagnosis and a tonne of referrals but no answers. It's too late to initiate any sort of early intervention and the longer we wait the harder things become. And yet, waiting is all we can do. It's funny, when i reread what I've written, it sounds pretty negative. But, while I'm honest in how I'm feeling, we're doing OK. The kids are happy, T and I are still as strong as ever. I guess that's what families do. You weather the storms and wait for the sun.

Wednesday, June 06, 2007

weekly lessons

1. The sound of your child falling down the hard wood staircase is one that I hope not to hear again

2. It is very difficult to draw a convincing horse with an etch-a-sketch...kitties and puppies even

3. Tylenol has this sick joke where the recommended dose is 1.5 ml and the dropper only goes up to 1 ml. If you have ever tasted children's tylenol you would know that there is no way that you can trick your sick child into taking that second dose....none....even if you do managed to get the dropper through barricade of little fingers and clenched teeth the chances of the tylenol remaining in their mouth and not sprayed all over your own face is extremely small.

4. When someone refers to their sale horse as perfectly broke, you should ask them to clarify whether they are referring to the degree to which the horse is trained or if perhaps something is broken....like their sanity

5. Yes, it can rain too much

6. Wood ticks aren't so bad....until you start finding them in your bed and on your walls. That's when I start to have a problem with it.I think that about covers it. I will spare you all the emotional crap we've been going through as of late. Raining outside, raining inside, it's all starting to blur together.