A {wanna be} post.... Happy Thanksgiving

I really really want to post something but my computer is DOWN for the count... and since we can't get a new one until we can make it to Boise, which just isn't gonna happen soon, I have to settle on this post.
It feels pretty lame to post without pictures...

We had a great Thanksgiving full of all the things that are important in life. I'm so thankful for my friends and family, happy we got to spend the weekend together.

carrot stuffing. cousins. movies. special grandma's house sleeping spots and late night stories. new baby. gluten free pumpkin pie with coconut milk. black Friday shopping until 3 AM! the story to tell of getting "assaulted". mom's picure in the star wars movie poster. ice skating. German friends. falling asleep on the couch. haircuts. 3 grandmas and grandpas. new roast recipe. oatmeal pie. angry birds. best drive home of all time.


"It's NOT a tumor"...

Remember that line from "Kindergarten Cop"? After all these years, I'm still quoting it. I smile a little, every time I say that quote in my mind - complete with Arnold Swartzenager's accent; I think it's funny that now it really does make me feel a little better.

So, no, it's not a tumor, and that's a good thing. It is, however, something. It's a Chiari 1 Malformation. (Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. Read more about it here or here )

I've had symptoms on and off since I was in Jr. High. And in 2005 I had an MRI that diagnosed me with a Chiari Malformation. The symptoms (headache, numbness and tingling in the extremities, muscle weakness, dizziness, light headedness, blurred vision, ringing in the ears) didn't seem to interfere too much with my life and they seemed to come and go with puberty, pregnancies, and breastfeeding, leading me to believe it was something that just "acted up" with my hormones.

In 2005, before I was diagnosed with this I thought I had Multiple Sclorosis - the symptoms of Chiari mimic the symptoms of MS. When my doctor called me at home to tell me my MRI results all I could focus on was that I didn't have MS. The fact I had a Chiari Malformation seemed to be no big deal. It wasn't causing symptoms, except with my babies, so I pretty much forgot I had it. In fact I even forgot the name of what it was.

This past year, though, I've noticed the symptoms returning. I'm not pregnant or breastfeeding so I began to worry a little as the dizziness and leg weakness began to affect me more and more. I've head chronic headaches forever, it seems. I was used to dealing with that. The leg weakness worried me, though. I continued to ignore it until about August. That's when I can pinpoint my headaches becoming bad enough to interfere with my life. After a month or so I saw a chiropractor. He did help some with my muscle tension but the other symptoms have continued to get worse and worse.

When I went to the Urgent Care for my headache the doctor said nothing seemed to be making sense, as to why my head would hurt so bad. He sent me in for an MRI. The MRI showed that the Chiari Malformation is definitely still there and more of my brain (the cerbral tonsils, actually) has descended into my spinal cord.

The only cure is to have surgery, making my skull bigger and cauterizing the brain so that my brain is back in my skull and there is nothing putting pressure on my nerves and arteries within my spinal cord. It's a very complicated, risky surgery. If all goes perfectly my recovery will be between 6 weeks and 6 months with most patients not feeling "100%" for up to a year. It's not something I want to do.

I've seen two doctors and plan on seeing at least one more - maybe two - to discuss the benefits of surgery. I'd rather live with chronic pain than be in a wheelchair...or worse. Only problem is that this condition can continue to get worse and I'd eventually end up in a wheelchair anyway. It's a very slow progressing condition (eventually leading to paralysis and/or hydrocephalus (water on the brain) and/or a cyst on the spinal fluid causing a backup of cerebral spinal fluid), so it's not something I have to fix immediately, unless my symptoms get worse.

I seem to be right on the line of "needing surgery" and "managing symptoms". The headache, I'm used to. It's intensity rises and falls but it's always there. I've learned to accept it and live with it. The shakiness and weakness, though scares me. There are times I'm worried about driving. There's been times that it's hard for me to hold my spoon. Even now as I type, I feel unsure that my fingers are doing what I want them to do. It's a strange, unsettling feeling, almost as if I'm shaking from the inside out.

I've been putting off seeing a surgeon because, well, surgeons cut. I didn't want to be told I need surgery just because that's what a surgeon does. It seems, though that a neurosurgeon is who I need to talk to. Chiari Malformation is a condition that isn't widely understood. There is not a lot of research on it. Because of this, I've had many different opinions from doctors as to what to do. In fact, once, before I was diagnosed, I went to a doctor and said my feet were going numb; he told me to change my shoes and socks more often! Seriously.

According to what Cameron and I have gathered from our doctors, talking to other "chiari patients" and other research, some patients symptoms can subside on their own, while other patients' symptoms continue to increase until they eventually become paralyzed (due to nerve damage). That could happen when I'm 50 or next year, or not at all. I'm hoping a surgeon will help me determine my prognosis a little more clearly.

For now my game plan is to get an appointment with a surgeon specializing in Chiari. There's one in Denver. Also, the University of Utah Hospital does these surgeries about once a week. I'm trying to decide where to go. In the meantime I am praying and using my best "mind over matter" skills to ignore these symptoms and make them go away.

My gut feeling is that I will need surgery. I'm hoping to put it off, though, until the time is right. I will need lots of help with my recovery. It's not going to be easy. But, I try not to think about it. Maybe I won't need it. Maybe it can wait until my kids are older. I hate not knowing.

One thing is certain though. This isn't a death sentence, by any means. The nerve damage can eventually cause death but that is years off. I feel blessed that I can take my time to research my options and choose a time for surgery that is most convenient for my family - my kids and my awesome parents and grandparents and parents-in-law - they will have to take care of me and my kids during the recovery time. I am blessed to have people around me to help me. It is a blessing to know they will take care of things when I can't. It's also, oh so, humbling.

I am learning much. I am appreciating my ups and downs in life. I am appreciating my children. I am appreciating my life so much more than a few weeks ago. This is a scary time for me. But, I am learning much (I know I already said that. I just don't know what else to say, I guess. If there is a reason for everything, I am determined to figure out the reason for this...) And I really am grateful that "it's not a tumor!"

Oh yeah, I just gotta mention, because I know I've come across like a flighty, crazy lady, lately: I'm not sure if it's because of the headache pain or a disturbance in the flow of the cerebral fluid but I've been doing and saying crazy things lately - I wrote 2007 on a paper today at a meeting and Landon's teacher had to correct me. I say dumb things. I've always been a little scattered but lately it's ridiculous. So when I forget your name or I seem to be "less smart" than I used to be, forgive me, okay? It's just because part of my brain is in my neck!


Halloween Weekend {2011}

It started on Friday... with classroom parties. Isaac decided to go as Spiderman - with Dracula teeth. He brought fruit and marshmellows for his party. I made a cake for Austin to take to his class and Landon brought popcorn. We hadn't even trick or treated yet and already our house was overflowing with junk food! (we still have a few pieces of cake, left...seriously, this holiday is not good on the waist line...or the teeth! Cameron's kinda going crazy about kids' brushing good at night. No cavities!)

That night we had our church party. I made Chili for the Chili Cook-Off, Cameron came in second place in the pie-eating contest, the Young Men and Young Women (and their leaders , including me since I'm still the Mia Maid Adviser) put on a little carnival, and the kids went "trunk or treating". This was Ella's first experience with people giving her piles of candy, and she LOVED it! She was so dang cute. Her, "twick oh tweet" was so clear and cute that everyone thought she was adorable. And guess what happens on Halloween when someone thinks your adorable - they give you even more candy! So, she made a haul and every now and then just sat down in the parking lot, grabbed a piece, and said, "open. open. OPEN!"

The boys took off with their friends. They made a haul too - I think Landon went around the parking lot at least twice. We ended up with so much candy that I didn't buy any for the Trick or Treater's on Halloween. I just gave out our Trunk Or Treating candy.

Saturday, we carved our pumpkins. This year ended up a little funny as far as pumpkins go. Landon got his pumpkin a few weeks ago when he went on a hay ride with a friend from school. Issac got his from his preschool pumpkin patch field trip. We just grabbed one from our garden for Ella and we got one for Austin when we went to the pumpkin patch together as a family. First year, ever, that I didn't spend a fortune just on our pumpkins.

Austin didn't want a picture of him with his pumpkin. He carved it all by himself and I LOVE the teeth he gave it. (his is the one on the left) Landon took two days to carve his because he wanted it to be perfect. He said he was waiting for inspiration. And Issac just wanted his to be the "perfect" Jack-O-Lantern, named "Jack-O-Lant".

Halloween night came and we "spookified" our dinner table. Isaac helped me set the table with the silverware set on the plates in cross-bone shape. I told him we were making witch's brew to drink (apple juice and ginger ale) and he wanted to "taste test" it. He said, "ummm, yum, Mom! This is the BEST Witch's Dungeon, EVER!" We had dinner in a pumpkin. I felt quite domestic because the pumpkins I used were from our Garden. They were planted for the purpose of making pie, but I didn't feel up to it (I still have one more pumpkin. I might still try a pie, I guess.) They worked perfect for dinner, though. And, as a note to self: Austin devoured this dinner! He LOVED it. Make it again!

For dessert we had {crock-pot} baked apples. I filled them with granola and cherry pie filling. We called them "Witch's Brains"... ooooh spooky, and seriously GOOD!

I snapped a few pics of the kids before we headed off to Trick or Treat.

Landon was RON Weasly... do not confuse him with Harry Potter, whatever you do! He insisted on the red hair so everyone would know he was Ron. He was bummed that people still thought he was Harry. The picture on the right is him fighting a dark wizard with his "wand".

And here's the ninja boy. After much much debate, Austin finally decided to be this ninja. He told me that 3 kids in his class had the same costume. Good ol' Walmart! (I had him look on three websites for a costume he liked and we found THE ONE at Walmart, ugh!)
Isaac had this AWESOME Buzz Lightyear costume. The wings and goggles light up. But he really wasn't into it. He wore it for our church party but for Halloween Night he was all about his ragedy, holey, old Spiderman costume!

I know I'm biased but seriously, is she not the cutest little kitty, ever?!

I brought Ella home from Trick or Treating a little early. She could have stayed out all night, getting candy. I wasn't feeling great, though so I made her come home with me. I went out to light our pumpkins for the Trick or Treaters and when I came back in she had her candy dumped out around her and she was ripping open everything she could, taking a bite out of each piece. She looked a little sheepish when I caught her, but when I laughed she squealed with excitement. I think it could've been the best night of her life!

Halloween is such a fun holiday. We had a great time with our family this year.
Isaac came into my room yesterday, while I was getting ready. He said, "Mom! I made up this song. Listen: Halloweeen, Halloweeeeen. Everybody dresses up. It's a scary thing! oooohh, oooohhh, ROAR!" I tried to video him singing it, but he didn't want me to. He sang it to us at dinner and we all laughed and laughed. I had one of those moments of, "my life is good!" Thank you, Halloween!