The next step over the peak

Oh the fun we had this weekend in Ellijay!  Guess what there is water in our pond! Max even zip lined through it and fell into the water like eight times. We saw two turtles, my mom thinks there’s fish, tadpoles and a big old beaver or groundhog!  Oh and a turkey and actually no snakes!!! I sat there all day didn’t have to cook got served and enjoyed the day. Oh and of course my kids wouldn’t go outside and play so I didn’t see them all day and that seem to occupy them quite nicely. I got to play with Isla and all was right with the world.

Until my doctor called me late Sunday night. Im glad I didn’t book our travels yet because it seems like things might be up in the air. I think this is where the apartment stay came in when he spoke to my father. They think I have necrosis in my brain which just means dying tissues and a dying brain, but they need to make sure it’s not swelling, but the only way to stop it seems to be brain surgery, and that isn’t even a for sure.

He said “I can’t promise I can cure her but we will damn near try.”

Then we went to the doctor to have labs this morning and they haven’t quite given up on us but they’re just out of options.  Oh and perfect CBCs of course! “Let’s all say it together, the healthiest sick person we know!” We have to wait till probably Wednesday until we get this the tumor markers and chemistry back. Until then we go onto high dose dexamethasone and wait to see what happens with that. It didn’t sound like he was going to wait around for very long. Like he could want us out there next week.

 I am your God I will strengthen you. I will help you. I will uphold you with my righteous right hand. do not fear.

Isaiah 41:10

it’s crazy how sometimes you’ll get a card in the mail and it says something like this where your entire right side being held up by God’s strength. I’m ‘trying to let go and let God’ something I’ve heard mike preach 100 times.  Unfortunately no one can make these decisions for me. I want to see my kids graduate drive get a car have babies (but not too early) and be Godly woman and men. That is most of all what I want for them is to just grow up in their faith.  Be strong and courageous young ladies with respect for all people alike. Most of all let there be a light that shines so bright everyone knows that she’s the most positive person on the planet.

Unicorn power!

I'll never forget

As I walked by my daughters room or as skip brought me by her room, plop to me into the elevator chair, and I couldn’t help but notice the first picture hanging in her room.  I noticed some red around it and couldn’t figure it out until I saw a heart. I wondered what it would look like without me.

My tumor markers rose again in a weeks time. One rose 80 and one climbed about 50.

I and trying to get in touch with my doctors all week and it’s just seems hopeless. They don’t respond and we’ve been waiting.  I chose not to tell skip until he got home because I didn’t want him stressing more. He’s already been so stressed with his job.

On a brighter note my dad brought bagels and cream cheese for breakfast and we laughed and giggled and had a great time. I didn’t know his extensive knowledge in memory for old commercials!  Then my mother-in-law came and had a good old time.  She babysat me I’ll skip went into the office and at 4 o’clock we pray for as Lana would say that daddy to be happy.  For daddy to have a smile when he walked in. we played sorry and chutes and ladders and just enjoyed the afternoon. A friend asked if we wanted them to grill stuff for us and it was amazing. I don’t know what rub he uses but it’s awesome. Then the girls talked us into Brewster’s and I think jax licked his little tongue Raw.  And all while that was going on I got my house clean!!  I mean I didn’t clean it or anything but this awesome rockstar named Stephanie did!

We started planning our trip out to California and it was a lot of fun.  Prices seem to be fair and if we jump on it I think we’ll get a really good deal. We just need to know if Dr. Kesari is going to be there before we make any arrangements.  Hopefully that is today!

Until then thank you for all the prayers, love, hope, and kind words. All you who have brought meals and clean my house and did my laundry. Run errands and just being there to cry on someone shoulder. I love you all dearly and wait with anticipation for what is next. I hope to find out today…      

It's been a long time...

My, my it has been a long time.

There’s so much to tell you about and I don’t even know where to start. This is kind of funny

because it’s dictating every word I say and not all are heard.

Let’s see if that works for you… (Skip is editing, but just a little. J)

No, not really but we’ll go with it.  I threw up this morning - that was joyful. I had two seizures in a day it - I love this but it is going to be harder than I thought. I had a lapse in memory and I have no idea what to say. You can fill a boy with whatever you want. (Skip decided to leave that line in just because it sounded funny. Not sure what she was trying to say) Oh!!! Several falls… because I’m just a stubborn little brat and I want to go where I want to go. I hate sitting on the couch all day long.

My seizure meds are maxed out and make me very dizzy. I find it hard to even function during the day when I’m on them so we’re lowering them a bit. Skip had to carry me to the bed (this morning) and I’m not the lightest person on the planet but I am now lighter than I was!

We are struggling to find balance in our home and with the kids. Would like to go to San Francisco and drive the coast down like we did last time. This is harder than last time. Gee whiz… The thought of doing this - I thought it would be good but hmm, I am I’m struggling to get the words out.

I’m going to take a break and nap a little. I have to do what I have to do. My eyes are doing my eyes are doing healing and feeling dealing Giling (edit: jiggling) yay. I have a midline shift of my brain and that’s not good. So we’re just going day by day...

I’ll be back in a little bit. (yes, skip is making me eat graham crackers.)

Oh, oh me and the girls tried to hide a fall (from Skip) and it was so substantial that he busted us. We said we were exercising on the floor and he knew we were lying. Seven falls in the in the last eight months. Some were more substantial and some not as much. We just never know.

There were two… I have sat here for 15 minutes trying to figure out what I’m supposed to write next. So frustrating.

There are three doctors who have basically given up on me. I hadn’t heard of that before but have now and they would’ve given up on me a long time ago had it not been for Dr. Kesari. And I’m not say that is the one that will cure me - we don’t know anything. 

I don’t expect to be here much longer. I don’t expect to be here through the summer. Lots of tears and lots of emotion. But lots of family time. And who is to say that I won’t my get another year or 5 years - only God will know and I trust in Him.