Tuesday, April 22, 2014

One Year

Today (Earth Day, of all days) marks one year from that first Grand-Mal seizure and the diagnosis of the tumor. Although we still have struggles we have come a long way since then. So today we celebrate not the first seizure, but all the progress since then and the many angels (on earth and in Heaven) that have aided us this year; the hardest year of my life.

I am so grateful for Keith who always made me feel like we were in this together. He gave me a shoulder to cry on every time I needed it (which was a lot). I am thankful for my two wonderful children who gave me a reason to keep going. Especially for Charlie who, although he was scared each time I had a seizure, would hold my hand during it and was always helpful and caring after it.


I also want to thank my extended family who supported me by long visits when I needed them most and gave their support and encouragement. Also, thanks to my many wonderful doctors who gave me wonderful care all along the way and those who are still caring for me. My ward was great with arranging play-dates, bringing meals, offering rides and just encouraging me. I have dear friends that have come and stayed with me, taken me to get pedicures (quite the treat), driven me places, and gave me the best birthday week ever.

I also thank my Heavenly Father who sent me little blessing when I needed them, to show me He cared. For instance, when I came home from the hospital and was really discouraged and overwhelmed at the diagnosis, I saw three new birds come to my feeder in less than a week. It is really strange that in such a short time three new birds would visit my feeder after having it up for two years. I haven't seen them anywhere else since then. That may not seem like a big deal to most, but to me it was a tender mercy showing that He was aware of what I was facing and He loves me personally. I am really overwhelmed with gratitude for all the love that has been shown to me.

This past year I have gone from having an average of 16 seizures every day to now one every week or so. That is a huge relief and serious progress. This past year I have had eight Gran-Mal seizures, one sweet baby, several MRIs, tried four different anti-covulsant medications (without much success) and one brain surgery. That is a lot for one year and I desperately hope that it will never be repeated.

Here's to a better year and a brighter future.

Monday, April 14, 2014

If I Can't Control My Hair, How Can I Control My Life?

Right after a bath it is looking pretty cute and nice. (Pictured here with cousin Grant who is only a week older than her and doesn't have her same hair issues.) A post about that delightful visit is hopefully coming soon... Anyway, back to the hair.

She is pretty excited about it too.

It slowly but steadily gets crazier from there.



We try a bow now and again as a desperate attempt to improve it a bit. Does it work?

Don't answer that.

 
 

 

 
Even though her hair is a bit (or a lot) unmanageable, she is still a cutie.

Thursday, March 20, 2014

Playing Catch-Up

A ton has happened since I last blogged. So I am going to just give a summary. There are a lot of pictures. Here we go...
The 3-generation pixie cut picture and Charlie helping Ama sing to Jane.
My mom stayed with us for two months while I recovered from surgery and tried to figure out the whole seizure thing. I am still having them but hopefully this new med will do the trick. Hopefully?


It snowed!


Mom helped Charlie (or is it the other way around?) build a snowman right outside our window so he could watch it get small, small, small.
Mom went home. :(


We did a little bit of yoga and went on few walks.

 
Aunt Liz and Ben came!

I love the picture on the left. It looks like they are deep in conversation.
So Jane got to meet her cousin Ben for the first time.



Ben likes to put his mouth on every cup or water bottle that his mommy does.
Charlie shared his cars and trucks with Ben, which means love.


Jane discovered her feet, which I think is super cute.


Charlie got a big boy bed (we just took one of the sides off his crib until we move the big bed that our multitude of guests have been sleeping on into his room), and is potty training! He can now keep his pants dry all day but has yet to poop in the potty. We have tried a lot of things but any advice is welcomed.


Charlie learned the hard way that you shouldn't run with your hands in your pockets.


Charlie also parked his cars on the piano (which he has done for quite some time I just have never been sneaky enough to get a picture of it), discovered basket ball (the hoops are high), and "helped" me make pie for pi-day (okay, so that picture is more recent, I just wanted to put it in).


Charlie did tummy time with Jane, Jane is learning to sit up (which she is very excited about until she does a face plant), and Jane discovered rain.



Keith got a few job offers and after narrowing it down to two (Fargo, ND and Kinston, NC) the company in Fargo flew us all out to check out the area. Charlie's first words after exiting the small airport in Fargo were "My face is cold." Yep, cold (very, very cold), windy, flat, with very few trees. Also has great people, good schools, and stores that carry a lot of Charlie's low-pro foods. But did I mention that it is cold and flat?

So we went back home and Keith accepted the job in Kinston, NC. But as soon as he did we both felt unsure about the decision. I just kept on thinking about it being incredibly cold in North Dakota.
Keith, who had a field site in Kinston, suggested that we take a drive there to see the area. So we did, and it was sad and scary. There were these big southern houses that were abandoned and falling apart. Crime was high and schools were terrible.


We did stop at a bar-b-que place that had very southern food. I got collards, fried okra (classic southern food) and carolina bar-b-que (of course). They also advertised fried chicken livers and fried chicken gizzards. I passed on those.

Then we hit Winterville which is a very small community outside of Greenville that was very nice. We kept on thinking of ways we could make living there work (the stores didn't carry any of Charlie's food so we could make trips to Raleigh once a month, etc). I realized on the drive back that if I lived in Winterville I would never want to venture outside of it due to how terrible the rest of the area is.
I reminded myself again of how cold it gets in Fargo and so when we picked Charlie up from our friends place we told them that we were pretty sure we were sticking with North Carolina.

That night, after the kids were asleep, Keith and I sat on the couch and thought things over. In the end we came to the conclusion that we should move to Fargo. Immediately we felt at peace. So Fargo here we come! (In September). Keith and I made a deal that every January/February, when I start going stir crazy I can fly to some place warmer.

Which isn't hard to do when the high with windchill is sometimes below -30 degrees Fahrenheit.

Tuesday, January 28, 2014

Sweet Baby Jane

It is crazy to think that, as of this week, Jane is three months old! I had to do the math on that one several times before I could believe it myself. Time flies when you are having fun (and not getting much sleep). It also doesn't help that most of December is a blur to me. Good thing I have pictures!
Chillin' with her Uncle Joe.

Examining her newly discovered right hand.
Enjoying her newly discovered right thumb. Oh yum!
Sorry for the fuzzy picture. I just had to capture this moment when we found Jane sleeping like Charlie used to. Almost always she prefers to be swaddled.
Speaking of Charlie, he is becoming a fantastic big brother. His favorite part about being a big brother is definitely anything to do with cars and trucks (which is one of his favorite things in general). He loves "helping" to give Jane a bath, as you can tell. Today he told me he wanted to share his cars with Jane, which is Charlie's way of saying that he loves her.

We all do.




Saturday, January 25, 2014

Three!

Yet again I couldn't get him to smile. Food is serious stuff apparently.
Charlie had his birthday earlier this month! Whenever someone would tell him happy birthday he would reply "Happy Birthday (Mommy, Daddy, Ama, Papa, Uncle Joe, etc)." For his birthday we went to dinner at Sweet Tomatoes (a very PKU friendly restaurant) and then came home to have cake and open a couple presents. It was pretty great.

video


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He looks so very grown up to me! Here is a bit of what he is up to these days:

He LOVES Veggie Tales (can't blame him, I do too). We got all of them for Christmas. :) He especially loves any that feature Larry Boy. After getting really tired of watching the two movies that feature Larry Boy, Keith had the genius idea to call any Veggie Tales movie "Larry Boy and..." Thankfully it worked. Now he just wants to watch the one with the hairbrush song over and over again.

He still loves to sing and learn new songs. The only problem is with this is when he requests a song that we don't know. It isn't uncommon for whomever is putting him to bed to call out for backup because he/she doesn't know the words to a particular song that has been requested. This has been a frequent situation with all the grandparents that have been staying here lately.

He likes to sing to Jane when she takes her naps.

He likes to "help" whenever Jane takes a bath. Often his brand of helping includes driving his cars over her face.

Ever since Papa introduced him to pipes and downspouts he watches for them everywhere. While in his highchair recently he noticed two downspouts on the building we can see through our window. He mentions them almost every time he is in his highchair now.

The other morning Keith went in to Charlies room to get him out of bed and the first thing Charlie says is: "I hear the magical sound of things out there."
Keith: "Oh yeah?"
Charlie: "It's amazing!"
(One of his favorite songs these days is My Heavenly Father Loves Me).

He likes to fold Jane's hands for her during family prayer.

He is full of energy and likes to test us sometimes, but we love him so much! We are so glad he is ours!

Thursday, December 26, 2013

Brain Surgery

These probes helped make a 3D image of my head (via MRI) to help the surgeon know more precisely where he was cutting.
It has been three weeks since came home from the hospital. So much has happened in those three weeks!

Wednesday (Dec 04), after a full morning at the hospital doing an EKG, x-ray, functional MRI, blood work, learning what to expect for the surgery, and getting my last decent lunch, I checked into the hospital. The functional MRI (where I did various tasks while having the MRI) showed that there was good separation between the functional parts of my brain and the tumor. A little miracle unto itself. That evening I had another MRI (the one where I got the probes on my head) and tried to get some sleep.

The following morning (Dec 05), I went into surgery, and the next thing I remember I woke up under a blue tent unable to move my head. It kind of felt like having tunnel vision. There were two people that I could see. I had seen both before, which helped put me at ease. One was the anesthesiologist, and the other was the brain surgeon's PA. I could hear others in the background but those two were the only ones I saw. The PA kept showing me flash cards and would occasionally peek behind the curtain to where the surgeon was. I was aware of pressure sensations in my head, which can only be described as weird. I can't know for certain but I think I felt the screws being placed in my head and being sewn back up.

Notice how I am holding my spoon in the second picture? It went downhill from there but only stayed that way for a couple of days. Even now I have difficulty with things like typing and texting, but I am noticing improvements each day.
My coordination and speech (as expected) were fine for the first little while and then got much worse before improving again.
I kind of wish I kept track of all the fingers I squeezed while at the hospital. Another discharge requirement was walking on my own. Keith and I would take strolls around the unit. A route which goes right by the hot chocolate machine.
Another thing that surprised me was all of the medications was put on and slowly taken off of during the following weeks. At different points I had IV lines in both arms, with medications almost constantly flowing through them, and received two painful injections into my abdomen, not to mention the pills I was taking regularly. At some point post-surgery I was visited by the surgeon who showed us with his hands the size of the part of the tumor he removed. I was kind of surprised at how big it was (about the size of a tennis ball), because I knew he hadn't been able to remove it all.
My gnarly scar, before and after staples (47, in case you were wondering).
How I spent the first week.
The grandmas and Charlie decorating the tree.
My parents taking care of my kids. I am so thankful for them!
I want to thank every single person who has fasted or prayed for me and my swift recovery. They have made a huge difference. There have been individuals from literally around the world and all types of religions fasting and praying for me and I can't even express how humbling it has been. Every time I hear about someone who is fasting and/or praying for me I am deeply touched beyond words. Thank you!

Another little miracle that has occurred over the last few weeks is that Jane has returned to nursing without missing a beat. While I was taking steroids to reduce swelling in my brain I couldn't nurse so my sweet sisters pumped and sent out frozen milk with my mom. Once I was safely off the steroids Jane went back to nursing as if she had never stopped.

Perhaps the biggest miracle, aside from my quick recovery in general, is my complete lack of seizures since the surgery. That is right. I haven't had a single seizure since the surgery. That was not at all expected by the doctors. They told me that the most likely scenario would be that I would remain on anti-seizure drugs indefinitely. At this point I am slowly weaning off one of the two medications and plan on doing the same with the second soon. I feel like I have my life back.

Monday, December 2, 2013

Update on Katie's Surgery Date

We just received a phone call from the neurosurgeons office to reschedule Katie's brain surgery. They have moved the surgery from Friday to Thursday. All of the pre-op appointments have subsequently been moved from Thursday to Wednesday. We do not yet have an exact time for the surgery, only that it will be happening on Thursday.