Wednesday, June 15, 2016

Recap, Pack up and Reload

I'm home for the first time this week. It's been a whirlwind and I'm loving it, except for the graduate class and walking pneumonia. There's no time for me to be down so...... I have two days to realign.

Here's a quick recap:

*Left last Wednesday for an AWESOME Spa day and Lumineers Concert with muh bestie.
*Hopped a plane and headed for Seattle. Hopped on another plane bound for Walla Walla.
*Enjoyed a FANTASTIC, FUN time with the soon-to-be Mrs. Buyssee and her Bride Tribe.
*Took in Walla Walla Wineries.
*Enjoyed an extra two hours circling over Denver, waiting out a storm.
*Drove home. (Leah drove, I studied).
*Slept for 4 hours.
*Went to Urgent Care and got meds that didn't work.
*Drove to Valentine to swoop up Pake.
*Drove to Omaha.
*Spent all day Tuesday at UNMC. Literally the entire day, starting at 7:45am and walking out of the hospital at 4:45pm

*Will spend today getting unpacking, repacking, doing laundry, cleaning out a nasty fridge, spending as much time as possible with my kiddos and squeezing in mega amounts of homework and hopefully be in bed before midnight (that would be a record!)

Pake's condition is stable. The MRI showed slight expansion of two tumors, nothing to be panicked about. He may have an additional tumor in his hand. This isn't all that abnormal, but it is unexpected and pretty strange for NF2. It doesn't hurt and it is not causing any neurological problems. He will go in for another check in three months. This will be his/our path for the rest of his life. He will always be tied to hospital. This is a disease and it is not curable. The plan is to stay ahead of tumor growth and to keep him functioning at as high a rate as possible.

It is a super shitty hand that he's been dealt but there's no other choice than to accept it. We don't know how things will go. We pray that the tumors are slow growing and that he can maintain his ability to hear. In the mean time, we will be "formally" learning sign language. Pake decided it would be a good idea to invent his own signs, so we spent about four hours in training with him! (I didn't get snake.... I thought it was a dolphin. I need more practice!) Pake opted for the cross hearing aids. This option is far less evasive than having another surgery for an implant. I don't blame him, he's been through A LOT. After saying for months that he doesn't want to have any devices, I think he changed his mind yesterday during the trial. For the first time in a year, he was able to hear what was being said on the left side and he didn't have to crank his head to the right. A big grin spread across his face and tears came to our eyes. Hearing is a precious gift. 

Since there's no way to know what lies ahead, our plan is to live full on, full out and enjoy everyday to the max. Pake's condition is a reminder to be grateful for EVERY moment, even if that moment is filled with tears and uncertainty. Tears dry eventually and usually this mischievous smile takes over.....

So this is the Air B n B we are hanging out at this week! (hahahahah) It's a pretty cute little spot. I love the flowers and the porch. Too bad the owner didn't have any coffee for us (I'll be leaving a note about that one). 

I do hope her washing machine is in working order because that baby is about to get a workout. 

As I came in last night and plopped my backpack on the floor, I realized how much I've lightened my load. I still have a long way to go in terms of downsizing and release, but WOW, coming home to a house that is more clutter free and less filled with "stuff" was definitely supportive. It made me glad that I spent the first few days in June getting this place in order. My only hope is that we can keep it looking that way while we are here. That is always the challenge! For those of you clearing, releasing and downsizing your spaces, I highly recommend working your asses off for as long as it takes to get to that point and then leaving for a week! You'll feel like you are walking into a new home AND you'll easily see the results of your efforts. I think this has to be one of the best ways to see progress in action.  

Alright, I'm rolling up my sleeves and preparing to dive into to the mile long list of things that have to get done before I leave again. I hope it doesn't sound like I'm stressed (well graduate classes always stress me out) but the traveling doesn't. It's very therapeutic for my soul. This is one of the things that I've always wanted to do. I appreciate having a place to call home but there's a pull to being on the go that I just can't get out of my system. I'm not trying to either, I'm just going with it. 

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