June 26-29

We are sleeping like babies here!! Up every few hours, needing things changed, not falling back asleep.....We are so ridiculously tired. Tired, and irritable, and on edge. I’m hoping this next week feels different, as it’s not at all easy to be part of a household that’s cranky, not for any of us! We’ve been working hard getting into a routine, but our house is not only cranky, it’s EVER changing. It probably doesn't sound too bad, to have people here and then not here, certain equipment to help Shannon, and then new stuff arriving; constantly changing therapists, appointment times that are scheduled the night before....(I can go on) but it's pretty much insane. There is no normal, and there is no outlook of normal for a while, because there are too many changes in our near future. The constant changes are really disruptive to the flow of things, and cause a lot of stress.

We have a weekly meeting with the family where we discuss what's on the calendar for the week. Then, each night we talk about the next day, what's going on, who is taking what shift, and when people are coming and going. We have shared calendars on our phones-plus several texts and/or conversations throughout the day about the MANY changes that happen, so we can all be on track. There are lots of alarms set for...everything. Meds, cathing, lunchtime, lunch pick up, therapy, screen time for littles, phone calls for medical stuff, work calls, naptime, weigh shifts, dinner, bedtime.....and we STILL forget-- a lot.

There isn’t a single night that I don’t have to count who is actually at our home to know how many plates we need for dinner (thank you, lovely friends, for the dinners that make is so I only have to count plates, not portions of food to make). I’ve gotten used to leaving Krisha out of the count recently, there are days when it's *just* our family (which is actually extended family), and other nights when we've had super fantastic people who are helping us in the count, sometimes extra family members, or Rachael and her girls are not here. PLUS** we just added another person to the mix.

Enter: Boyfriend. 

Shannon’s man Scott arrived on the 26th. He was here for a few brief days the first week after the car crash. When we got Shannon to Philly and realized there was no way they were going to let US in the hospital, let alone her boyfriend; he went back home. He’s wanted to come back to help and to be with Shannon as soon as she was discharged from rehab, but we had him wait until we felt at least a little sane. I don’t know that we do, but this is when we planned to feel sane. So here he is. 

Scott’s mom and brother drove out with him so he could have his car here and be able to work and spend as much time with Shannon as possible. I, for one, am so extremely grateful he’s in PA.  I can’t do this alone, and Rachael will need to get back to her real life soon. Our plan is to have Scott help out during the day, and work evenings. Hopefully, with this plan, I can take care of my house and other kids (remember them?), and myself.....a little; but that's currently a dream.

It was nice to spend a little time with Scott's fam and get to know them a bit. We really like them. I mean, his mom dumped him off in a foreign land (they are from Vegas...so....no trees) and left him for dead in our capable hands, BUT he's an adult; so we won't hold that against her. Actually- I happen to know how hard it was for her to leave knowing the challenges in store for her son whose girlfriend is going through so much! (He's gonna be okay SP, I promise. We will take good care of him)

Lancer likens people being forced choosing to spend a lot of time with our family to baptism by fire. With like--- real flames. It's sink or swim. Survival of the fittest. You can't really beat us, so you just have to join us. Within a few months of thinking of joining our family, our now son-in-law Ray suddenly had all kinds of things in common with my husband. Coincidence? Or survival skills.....you decide.

As of this writing, Scott's fam is back at home, and Scott is....alive. Actually, he doing great. It's a lot under normal circumstances, this family of ours. He gets so many brownie points for uprooting and moving cross country to this crazy situation we are now officially calling Home {it started as an omelet but we screwed it up and now its scrambled eggs} Skillet. Kudos Scott!! Welcome to the crazy.

Today was a hot-mess-everything-was-off-day. So crazy fire, for sure. Shannon was supposed to have therapy at 10 so I planned to get her up at 9, but I forgot that the alarm company was coming and he showed up at 8:45...and needed to work on the lock in Shannon's room. She woke up to two men in her bedroom (one was her dad) and then banging, and other noise. We couldn't get her up and dressed because they had to be in the room, so we canceled therapy, I had an appointment at 11, which, when I arrived was apparently at their OTHER location, then Shan's nurse called to see if she could come over in an hour, and speech therapy came at 11:30. Rachael was holding down the fort, but it was a lot of FORT...which involved issues with the alarm stuff that she didn't know about, and her own kids needing her attention, and a work meeting. Shannon ended up staying in her bed until 1:30 when I got her out so she could meet up with another appointment. Then we had a telemedical that apparently wasn't today after all-.....so Scott now knows we DO NOT have our crap together. Not. At. All.

In other news:

Some exciting things happened this weekend- I can now TALK ABOUT IT.

**IT**....being THE BATHROOM. (the heavens are open, the angels are singing!!!!)

I think it's absolutely fantastic!

{Takes the microphone}
I'd like to thank my SIL Tyler, my brother Steve, Lancer, LBJ, Nathan, Kristian, Mike, Stephanie, Tim, Bridget, Jimbo, Milan, Rachael, (and I'm sure I'm missing someone in here. Feel free to call me out on it) for making this dream a reality. Without their support and especially their help, I would be forever hauling pitchers of water into the bedroom to wash Shannon's hair on her bed over an empty polymeric sand bucket, and a shower liner, with water going everywhere; shaving legs on a towel, refilling pitchers when the water cools off too much, while sitting under a heat lamp, wondering why *I* already showered because now I need another one. (and listening to Shannon tell me she's gonna die) Score: 8/10 Happily- it's not gonna go on much longer.

Do you want to see what it looks like? Of course you do!!! And if you don't, well. Scroll quickly.

Hallway to bathroom :) 

 I had another idea originally for the room, but then decided it wasn’t ‘her’ enough. Shannon LOVES pineapples (Psych). So. Pineapples! Also...check out that sweet toilet and bidet....(never have I ever imagined I would say 'sweet toilet', so that was weird)

Heat lamps, two hand-held shower heads, a rain shower head, and plenty of space for her shower chair and one to two ladies helping her get cleaned up. (Life as a quadriplegic)

We did a custom vanity so she could roll under it and still have drawers that are accessible, and a tilt mirror so she can see herself while seated. The shallow sink (for leg room) made the faucet situation fun. This is the fourth faucet. I've got the insider scoop on what faucet's DON'T work with that kind of sink, or don't work in general. 

Low cabinets so she can reach her things. And Alexa....more on that in a moment.

And I fell in love with this shade of blue for the barn doors on her room and bathroom and HAD to paint them that color. Love. I need them in my room, only they won't work. So I'm living my dream via Shannon. 

And this is the BEST PART. U by Moen. Lancer did some research online and found it :D

Wanna see it in action? I highly recommend you move away from any amazon devices that happen to answer to the name: Alexa


Pretty Fantastic? I think so.

We have a smallish water heater, and we don't turn down the temperature on it because we have a lot of bathrooms, and are constantly doing laundry- so we run out of hot water quickly. With the temp up, we just add more cold to get the temperature right, and there is plenty of hot water to go around.  Knowing that Shannon can't feel when the water changes from warm to too hot on most of her body has been a concern. The selling feature on shower device beyond the hands-free aspect is that you can preset temperatures. So when it turns on, it will heat the water to the set temperature and then maintain it. It even shows you on the display that your shower is ready at your perfect temperature. (FYI- 110 degrees is Shannon's current favorite temperature - it's also a great temp if you need to activate yeast for bread. Not that I recommend doing that while you shower ;)

And.....that's not all kids!! Because LOOK WHAT ARRIVED TODAY!! (I am more excited than Shannon) THIS. This is why those pitchers and that awful temporary commode chair are OFFICIALLY a thing of the past. Long gone. Don't let the bathroom door hit you on the way out! (Bye, Felicia)

THIS, my friends, is her shower commode chair. It's bigger than her wheel chair. It's why the shower had to be so spacious. When you can't sit up on your own because you don't have the core strength required, you need to keep your skin from breaking down and getting sores, you can't control your body temperature, and you're blood pressure is all out of whack-- this is the answer. All I worry about when I hop in the shower is if there is enough conditioner left and if Lancer's razor is still sharp (haha...just kidding Lancer- maybe.). But it's a whole different story with Miss Shannon. 

Everything is a whole different story these days. It's kind of a Choose-Your-Own-Adventure. Most of the options don't end well, though. But. This is a happy ending. Saturday we chose to skip going rafting and instead worked on the bathroom (plus it was raining), and today I got a call from a dreamy guy named.....Kyle(?) who said in the most heart pounding way "Hi Kim, I wanted to let you know Shannon's chair is ready. Can I come by this afternoon and drop it off and show you guys how to adjust it?" I said "YES!! A THOUSAND TIMES, YES!" Actually, I told him he'd have to wait until 2pm, but that would be great. So now we have a working bathroom, AND a working chair. Blessings. 

I would be remiss if I didn't mention that Shannon's shower chair is brought to us by the generosity of the Adam Taliaferro Foundation. She received an award that provided her with this chair and also her smart drive for her wheel chair. We are so grateful for the blessings of having them both provided for her. Go read Adam's story and about his foundation. He's a local and went to Magee for rehab. He was paralyzed playing football and now he can walk again. :) 

Shannon has been having a lot of pain in her shoulders, back and neck, We would appreciate prayers to alleviate that pain, as well as continued improvement in her mental and physical strength, her spinal cord to continue it's healing and her feeling and function to return to normal. Thank you friends, for all that you do for us, and for your love. 

{favor, please: if you are gong to go back to my Facebook page and leave a comment, please don’t  leave a detailed list of  what I said here on the blog. It kind of spoils it for people who haven’t read the post yet :) You can leave those comments here. }

"The FUUUUNNNN has ARIIIIVED!"

Turk, Disney's Tarzan