Multiplication and Mermaids

So, 7th grade is hard, and exhausting!!  After two weeks of 7th grade for Bouga and an hour and a half of it for me last Thursday, that is our description!!  Homework is important, HOME being the key part of that label, and Bouga is not quite getting that concept.  He likes the line "I can finish it in the morning before class starts." which I am pretty sure equates to "I can finish it in some other class before I have that class which means I won't pay attention to the class I am sitting in."  No Bueno!   Especially when the teacher that appears to be the sweetest and most easy going of his bunch said the easiest way to make nice Mrs. Moore turn into mean Mrs. Moore is to do math homework in Written Communications class.  Of course, math is the subject he most often wants out of.  After a couple years of fighting with Will when we work on math, multiplication specifically, and a discussion with Spencer, we almost think Will missed the multiplication tables in the 4th grade debacle that destroyed his life for an entire school year.  Yup, that's right.. my 7th grader has NO clue how to read the multiplication table, let alone have it memorized like we had to do at that age.  The poor kid has survived almost 3 years counting out his numbers to figure out his multiplication problems. I had no idea until last week when I tried to show him how to use the table to solve a problem and he freaked out.  Not a "I hate this" freak out but an honest to God "I have no idea what you are talking about" meltdown. Holy crap!!  Pre-Algebra is hard enough all by itself, but how on Earth do you survive it when you have gone 3 years not knowing something you were supposed to know???  And we wonder how kids make it through school without learning how to read!! This is a kid that has every eye in the school on him in an AMAZING school district and he struggled himself through 3 years without anyone figuring it out. Although that sounds horrific, YAY Will!!  I hate math, I was horrible at it, still am, there is no way I could have made it 3 years without one of the biggest structural bases of mathematics being nailed into my head and memorized, but he just made it 3 years with A's in math without knowing the tables, take that Autism!!!  So, now we get to learn the tables and hopefully get a new outlook on math!

Now, anyone that knows me knows that I love most anything that has to do with freedom, and speed-  horses, race cars, roller coasters, wild animals (minus snakes and spiders which I think should all DIE!!)  Although I have never given much thought to being a princess in a Disney movie, I always did like Ariel because she swam free.   Well I learned the other night that I can check being a mermaid off my to do list, because if what I experienced the other night was ANYTHING like being a mermaid, I never want to experience it again.  I have read about severe drops attacks, talked to new friends who have experienced paralyzing ones for minutes on end, and been told that the ones I experience are on the minor side of things.  Because I seem to be digressing so fast with this condition, I guess I knew more severe ones were coming but I had no idea how scary and down right depressing they would be.  The other night I was in bed waiting for the elusive sandman to visit, rocking and swimming like I always do when I lay down, and I had this strange thought that I was not able to move my legs.  I thought "That's insane, of course you can!!"  but when I tried I honestly couldn't.  I could move my hips, but it felt like my legs were glued together and made of cement.  After several minutes and attempts and a panic of tears, I finally was able to make them move separately, and eventually sit up and move, but they were very weak.  I wobbled to the bathroom only because I have door jams and walls to lean into every step of the way, and apparently decided to check the structure of the house along the way because I whomped my head on each corner because the swimming feeling wouldn't go away and I wasn't quite judging my distances right.   When I crawled back in bed and let it all sink in I just kept thinking "I don't like being a mermaid, I don't like being a mermaid" and for the first time since I received this horrible news, I let myself break down alone.  I have let myself get mad and have an occasional break down since I began this struggle months ago, but always when I am with someone who can talk some sense into me and be a logical voice when I lose it.  I have been very careful NOT to break down alone because I have been afraid if I lost it mentally on my own I wouldn't be able to turn it back off without seriously damaging my mind frame and outlook on all of this, and apparently I was correct- My laid back, I am not going to let this beat me or take my life away attitude took a major hit, although maybe that is exactly what I needed.

Everyone knows that I have not been aggressive with hounding Neurosurgery about the next step or test.  I felt there were a few things I needed to get in order before I decided to lay myself up with surgery, and honestly I guess part of me wanted to see if I could just live with it... I am not so sure why I thought that was going to work since I know a syrinx HAS to be operated on, but still, it sounded good in my head at the time.  This has not been a popular thought process with my loved ones, their thoughts are that we deal with this surgery and the rest will work itself out.  They were seeing what they felt was a steady decline in me, and I was still in fight mode and not willing to acknowledge the slow changes I had been making. . Well, I kept saying I needed 8 weeks to 10 weeks to get things in order to where I felt comfortable and it is almost 8 weeks since my diagnosis and almost everything is in order that I needed to be in order. So basically now there is no excuse to not hound neurosurgery. Instead, there is a sense of urgency to get things moving.  There HAS been a steady decline in the quality of life I have led over the last 6 months, but most noticeably in the last 8 weeks.  I have slowly gone from the one who had something to do every waking moment of every day to not being capable of doing anything most days. I have been dismissing the giving up going dancing because I just didn't feel like it, the sleeping more and more, the added minutes to getting up out of bed and letting the world finish swirling before I could safely walk, the increasing number of days that I would spend vomiting anything I attempted to eat because the migraines were taking their toll. Day to day and week to week there is no drastic change, but month to month there is no more denying that Chiari has stolen my life.  The only thing I am managing to do on a regular basis successfully is work, and I am scared that it is only a matter of time before that will fall victim to this if I don't get zipped sooner than later. I can't go a day without a headache, most of the time a full blown migraine type headache, and the pins and needles are always there now, and always painful.  It's draining to function through them, let alone annoying as all get out that they are there in the first place!!  One shift puts me in bed for 18 to 20 hours after I get off, two shifts in a row can wipe out 2 or 3 days.  This time of year we are always on the go between fairs and festivals and sports, riding our horses almost daily, and camping almost every weekend. I am always that fun mom that is taking my son to amusement parks and lazer tag and just loving and living life.  This year, I am trapped in my bed, unable to move well enough, unable to function to be out living our crazy fun life, unable to even fake it, which it seems I have been doing for the last year or so. A month ago I could tell you all about Chiari, and it was consuming my every thought because of the new diagnosis, but it was not consuming my every move. 7 weeks ago it was still a crazy medical term that included all of these odd happenings and symptoms in my life but I couldn't tell you that it had taken over my life.  I didn't want to admit that it had.  I wanted to be that one person that persevered through it without it being apparent that I was fighting this battle, I wanted to be the strong person you guys have always said "I don't know how you do it!" to, but this time, I can't.  I promise I am not setting a tone for all of my future posts to be doom and gloom, but there is something to admitting we are no longer in control, and admitting it to others just as much as admitting it to ourselves.   I am through waiting on neurosurgery to call and tell me when my appointment is and trusting that if this were emergent they would be moving faster.  I'm through saying if neurosurgery isn't calling or moving fast than I don't need to.  It's time to get help, it's time to feel better, it's time to get the steamroller moving again so I can have my life back, so my loved ones can have me back, and so Chiari can be just a part of a list on a medical chart and not the puppet master of my life!!!

Cows and Test Results

First off, a bit of information for those who are new to our family, William LOVES cows, William at times is OBSESSED with cows, and very specifically black and white cows. It is some weird adoration in his little Autistic mind that if you analyze it, it has to do with black and white and all sorts of psychiatry stuff that is gobbly gook to most of us.  Anyway, there are 2 new babies at the barn and yesterday I took the opportunity to take Will out to see the newborns since he very rarely gets to actually visit with a cow.  Neither are black and white, but I took a chance anyway, and we hit a home run!  I honestly thought I was not going to get him out of the stall of the little black one, he sat there star struck staring at her and gently petting her and if I would have let him he would have laid right down and gone to sleep with her for the night!  He wanted so bad to hug her, but decided not to "just yet, because she is brand new and might get stressed." We will be visiting the babies daily until they move back out to their pastures, and I am officially the coolest mom in the world once again!!  Yay me!!

It's been an eye opening, soul searching, emotional 3 weeks. I have sat down to blog a couple of times, but haven't had the words, or the thought track, or the motivation, to put anything on the screen.  I've read and re-read my blogs from Will's journey thinking that I would find something in there that would spark something in me to write, but nothing.  In fact sometimes I would look at his entries and wonder where on earth those words came from!!!  So, a bit scattered brained and I am sure leaving TONS of information out, here's what's going on with me.

After the whirlwind week since my first MRI, I have been stalled out for almost 3 weeks awaiting the CINE MRI that would show the cerebral spinal fluid flow in and out of my brain and of course give us an actual head MRI since my diagnosis was made off of a spinal MRI that only showed the very base of the skull.  Although we know I have the syrinx and a syrinx is almost always surgical, they needed to know if my Chiari was severe enough that it was blocking spinal fluid flow.  Apparently this is another determining factor for surgery verses medicinal treatments, and would tell us if surgery was needed sooner than later. I was told that as soon as the MRI was done I was to call neurosurgery and let them know, then after they look at it they would either call me with an appointment date or call me with an OR date.

The CINE MRI was on Thursday and I went by myself.  For those that have been around for years, you know that me going to the hospital for tests (usually for Will, but still...) has been a topic of contention.  I live and breathe the medical world and for me it is no big deal to go to work and sit in a waiting room, have IVs started, tests run, etc.  I would prefer to save the offers for company and a second ear for hospitalizations and when we "need" people.  Again, those that have been around go ahead and laugh because you know that I have yet to say "I need you!!" when we have something going on.  So once again I went off to the hospital by myself, after all, I JUST had an MRI last month, and no one was going to tell me any results or big news anyway.  I check in, get my wrist band and sit down to wait... probably what should be the most uneventful and boring part of the entire day.  Ummm, nope!! I look down at the wrist band on my arm, a band I have seen tons of times over the years, and I see "Attending: Pollack, Ania", not my family medicine doctor, not an ED doctor (with me and my horse escapades the ED docs have seen me a few times on their table as well), not my rheumatologist... Ania Pollack is my new doctor, my neurosurgeon. This was the first time I had seen any of it in official black and white hospital record print.  Reality check, this is no longer medical terminology I am rattling off about a patient or a surreal dream that I am not quite sure is happening, this is real, this is happening, and this is me!! So there I sat in the Radiology waiting room bawling my eyes out, and I am sure everyone thought I had lost my mind!  Somehow I get my act together, get through the IV, the MRI, and the drive home, bury myself in my bed with my 20 pillows and sleep my panic away. 
Friday was an appointment with my regular doctor to touch base.  Although I had briefly thought she MIGHT be able to tell me Thursday's MRI results, I figured even if she could, she wouldn't, so I traipse off to the hospital once again on my own.  I sit down in the beautiful new exam room and start talking to the med student and my doctor about all the tests and news from the last month, including Thursday's MRI that "neurosurgery is supposed to call me about soon".  As I say that last part, the med student turns the screen of the computer she is look at towards me. I scan the screen quickly, I'm familiar with the layout from charting and exams for our patients, and I see CINE MRI OFFICIAL REPORT.  Here is where I realize not only should I have probably brought someone along with me, I realize I NEEDED someone with me. Ok, from now on, you guys win, you guys can come, I admit it, this time around I can't stay in health care mode and deal with stuff "later", I can't be the strong mom that you all have looked at over the years and said "I don't know how you do it without losing it."  Apparently when it is in MY head I cannot separate the news and details from the emotions, I can not do this without losing it. 
The MRI confirmed the previous diagnosis of Chiari 1 Malformation with a Syringomyelia at C3-C6 with protrusions of the C6 and C-7 disc and extremely diminished cerebral spinal fluid flow.  Big crazy words simplified- this MRI agreed with the first one that I have a narrowed base of my skull that is pushing my brain into my spinal cord, that there is a gathering of spinal fluid INSIDE my spinal cord, and showed us that there is a block in the flow of my cerebral spinal fluid from my spinal canal to my brain. I've gone back and forth between hoping the flow would be effected so that there was something to correct and possibly take away or at least improve my symptoms and hoping that it was not, because after all this is spine and brain surgery and you really never want something to be seriously wrong with yourself... at least no normal person does.  Now we have the pieces of the puzzle that neurosurgery wanted, and I get to wait for neurosurgery's phone call and my next set of directions.  Have I mentioned that patience is NOT a virtue I possess?  If I haven't, or you don't know that tidbit of info about me, PATIENCE IS NOT A VIRTUE I POSSESS!! Anyone know where you can buy patience? Anyone know a sorceress that can conjure up a patience spell for me?  Somehow, I think I am going to have to figure out what this patience thing is all about....

Will's Background Story - Originally on Caringbridge March 28, 2006

Those of you that know William Christopher know that he is a bright loving child who has been healthy and happy over the last 6 years. The first part of March 2006 he was standing perfectly still talking to me in mid sentence and fell over, his eyes deviated to the right, and he stared right through me for abut a minute. When he finally "snapped out of it" he looked at me like I was crazy when I asked him if he was ok. He had no recollection of the event. He complained of a mild headache in his forhead for approx. an hour and then when asked about it said that it didn't hurt anymore. He had another episode much like this almost a week later. I scheduled an exam with our pediatrician and we lucked out and were able to see the pediatric neurologist that day also. The doctor feels that there is at least a 1 year history after our discussion. He has had "staring spells" at school and trouble concentrating, but his teacher felt that he was bored in class. He also has had a couple of episodes where he has had incontinance or vomitted and when asked about it said "I didn't know I needed to." He is an extremely bright child who is reading at a 3rd grade level and the teacher and councelors were chalking his spells up to him being a smart child who wasen't being challenged enough. The doctor feels like these were probably during seizures that we were not noticing.
Tests and more tests, questions and no answers, then answers, but not answers we wanted to hear. William has been diagnosed with a Venous Angioma in the left frontal region of his brain, Epilepsy, and Aytpical Autism. But nothing in the medical world is cut and dry, and there are typically more questions than answers. Please feel free to read through the journal entries and follow our roller coaster to the present, or join in now and follow along as we continue to love, learn, and live life.
I used to go home every day and hug my child and thank God that he was healthy and say a prayer for the unfortunate children and thier families that I care for at the hospital that had encountered medical difficulties. Now we are that child and that family.


(Lots has gone on with Will since this orignal post was wrote in 2006, if you would like to read more about his journey from then until the start of this blog, feel free to message me for information on his Caringbridge site.)