Home Sweet Hospital

So, it begins again. I'm in Progressive Care Unit at KU Med Center, room 6213. Current thought is that I'm having a recurrence of the GBS or I have CIDP, Chronic Inflammatory Demyelinating Polyneuropathy, basically chronic GBS. Neither is positive. Nothings really happening tonight, just IV fluids, start IVIG again either tonight or in the morning, and then Lumbar Puncture in the morning. We'll hopefully know more tomorrow after tests and such. It may be that I transfer to a different hospital. We'll see.

AAAAAAHHHHHHHH!

All I can think, is this is crap. I'm headed back to KU Med tomorrow to try and figure out what is going on. I'm relapsing and my numbness is again ascending, it's at my mid thigh. I guess it's back to the blog. :(

Things:)

ARE GOING GREAT!!!! Just today I found that my kick out is at about 80% !!!!!! I'm flipping out! OMG! I actually teared up because I hadn't measured it or my progress in a while so when one of my docs asked me this morning, I surprised myself and everyone else. I can just about straighten both legs, with the right one a little better than the left. This means that the next time we go to KC for an appointment(in two weeks), I get to walk in with my braces and give everyone cookies!! I would also like to say that the amount of weight I've lost now surpasses the amount I now weigh. I was 275, I am now 134. i win:)

NEW CHAIR!!! and other things that happened this past week

Oh man, so much has been going on, but every time I get home and get ready to blog, I'm too tired and just fall asleep. I'll start with therapy and work my way through the last week. Therapy has been especially amazing lately. When I first started at Kansas Rehab, I wasn't really impressed or comfortable, but I got to know the therapists there quickly and now I love it. I've been working super hard on walking, doing all sorts of therapies and using all sorts of machines to relearn what I forgot and get my muscles to listen. A couple of days ago, I walked by myself in the pool while holding onto the rail(my knees still like to do funky things, like lock, go backwards, and collapse out in front of me). I was so happy with myself. My therapist, Gus, walked next to me, but he didn't have to hold on to my gate belt and the few times my knees collapsed, I was able to pull them back up under me. I'm sooo close to walking it almost hurts! I still have altered sensation from the bottom lip down, but I feel heat and cold and pain where I could not before. My lower legs are regaining muscle strength and they have stopped hurting all the time. I think the lowered sensitivity and pain is due partly to PT and OT.

I Did It!!!!!

So this past week has been all about making amazing strides in my mobility and ability(and being sick). First off, I'm doing about 75% of my transfers without my slide board. I'm able to hop from my chair to the car and back as well as to and from the bed and commode. It rocks!!! Also, I figured out how to get back out of the recliner in the living room without any help. But I have to say tonight's triumph was the biggest. I was able to use the bathtub in my parents bathroom:) Before I got sick, I would spend hours in the tub. I read in there and just hang out. So when I lost the use of my legs, this loss of the tub was very upsetting. I was determined to find ways to do things like use the tub and stairs while still having extremely limited use of my legs. So I did what any internet savvy person does and went on both google and youtube. After a while of searching, I finally found a video of a lady demonstrating how to get in and out of the tub without leg mobility. I tried it and it was AMAZING!!!! I got in and out just to make sure I could do it, and then I got back in and had what has to have been the most amazing bath EVER!! It was most excellent and I'm so glad I'll now be able to use the bath because the hot water makes my tight leg muscles feel so much better and it helps with my angry tummy too! About the stairs though, I think going up and down stairs in my chair is not something I'm going to try, the videos look WAY too scary and intense. I think I'll stick to going up and down on my butt, which I still haven't tried, but I plan to too, since my wii is upstairs. There is a long staircase, but since it's carpeted, I think I'll be able to do it safely. I'm still waiting for my wheelchair, but it should be here any day now. Life is good:)

Home Life

So I've been home for awhile now, and it doesn't suck as hard as it did at first, things are getting a little easier. This morning my dad and I went to KC to an appointment at KUMC with a psychiatrist who specializes in Aspergers. We saw Dr. Hellings and did another assessment. I go back in 10 weeks to see what she thinks. While there, we stopped by PT and I got to see Claude and Alicia and everyone!!! It made me really happy and I was glad I got to show everyone my progress and how I can do a wheelchair push up. We also talked to Claude about starting an Etsy shop that sells custom transfer boards, she too thinks it would be a great idea and said she would let patients know about it if we brought her cards. I thought it would be really hard or weird seeing everyone again, but actually it really brightened my spirits. On another note, my shoulder muscles are really getting soar these days, I suppose I should really start to stretch every morning again. Today I feel hopeful, I just hope I stay that way. OH! I wanted to say that for lunch we stopped at Local Burger in Lawrence and it was most delicious!! I would definitely go again. :)

Home

Well, I'm home, and first it sucked. But now I think I'm getting better adjusted. Still, it's gonna take a little longer to truly feel at home.

Last day of rehab and tomorrow I go home!!!!

Today has been bittersweet. While I'm super excited to get home and to resume my life, it's almost like this has become my life. I'm scared and sad to leave the hospital. I've met so many amazing people who have helped me through some tough and scary situations. I've been inspired by my time in PT, where people relearn how to move, to get around, to live independently. I'm in debt to the nurses, doctors, and therapists who have pushed me to get where I am today. If any of you are reading this, thank you. This hospital has become my home, and I'm frightened by the challenges I'm bound to encounter as I return to my home,my life, and my friends and family in Topeka. Thursday I start a day program at Kansas Rehab. I'm hoping that things continue to progress and that my numbness continues to recede. I now have a patch of skin on my right upper arm that has normal sensation. We took down everything that was on my bulletin board(which was completely filled up) and mostly cleared off my bedside table. We also popped the second balloon bouquet and breathed in a little Helium:) Mom came after work from Topeka, and we went out for Mongolian grill. It was super yummy delicious and when i was done, my plate still looked like no one had touched it. I gots to go to bed, big day tommorrow:)

Going stir crazy

I am so ready to leave this place. Two days seems like forever, and packing up my room seems daunting. We are slowly emptying it out, but it still feels like there is so much left. This is more than I ever thought I would have to deal with. I have been diagnosed with Asperger's Syndrome. This explains a lot. When they first told me I couldn't stop crying. Then I got angry. I had been seeing pychologists and therapists since I was 8! How could they miss something as big as Autism!!! I wanted to hit someone, but dad calmed me down. On the plus side I'm able to do more for myself and getting a little stronger each day. Last day of therapy here tomorrow, makes me a little sad. But I want to be home more than I want to stay here to work with these therapists. g'night...

Erin's Shower!!

Today didn't start great, and there were quite a few bumps in the road, but it ended well.
OT- Worked with Caitlin on slide board transfers and wheelchair positioning.
PT- Got on the mat and worked on bridging, which is where you put your knees up, push through your feet and lift your bottom. We also worked on knee control.
ST- Divided Attn., Auditory Memory(puppies), deduction puzzle(reasoning)
Then I got a pass to go to my cousin Erin's baby shower!!!! It was AWESOME!!! I was so excited to see a bunch of family and also to celebrate the upcoming birth of a new cousin:) It all went well and we got back to the hospital and I slept really good.

Day 53 and 5 days left!

Man, am I making progress! I got my new rental wheelchair and it is SO much more comfortable than the old one. Plus it weighs like 10 or 15 pounds less than the one I was in before and it fits me like a glove. Also, they are letting me wheel myself to therapies by myself! That means remembering what time therapy is and where the heck I go for it. Around lunch time today they let me wheel myself off the floor, which was a little dangerous because my memory is still not so good. I managed make it to the gift shop, but I got lost on the way back. I ended up asking someone and they pointed me in the right direction. I made it back, but that is the last time I go anywhere alone. My physical therapist, Claude, introduced me to a new kind of slide board, a wooden one that works so much better then the white plastic one. She is letting me borrow it for now and I went online and found one for home. I stood in the standing frame for 40 minutes! It was awesome!!! First I was in it for PT, but then Caitlin, my occupational therapist, came in to the PT Gym to do therapy. We did arm weights, and although my left is still weaker, it is getting better. Mom came back after lunch with all my clean laundry. Dad came back from Topeka after working on my new wheel chair ramp at home. In addition, they took the carpet and the tile under it up and are refinishing my wood floor to make it easier to negotiate with my wheelchair. My new wheel chair is ordered and it will be electric blue with sparkles. I get to come home on Wednesday!!!!! My hospital bed and supplies are being delivered on Tuesday. Conan, Lori, Tessa, and Etta came to see me here at the hospital. It was amazing!!! Oh, and another amazing thing. I got my PIC line removed. No more I.V.s. I am going to my cousin, Erin's, baby shower tomorrow. (The afternoon away from the hospital.) I plan to be at Fellowship on Sunday, March 28th. I'm so excited to get home, but I'm definitely going to miss the awesome nurses here. Once I can walk again, I'm coming back to thank them with cookies and cupcakes:) Well, I'm off to bed, more tomorrow.

PT and Exercise Group

1:00pm PT- I had Kara instead of Claude today. We did mat exercises and then trunk control exercises, which I'm totally getting better at. Kara gave me a stretchy strap that I can use in my room to help strengthen my thighs. My left is still weaker(and my hand still shaking), but it's improving.
2:00pm Exercise Group-

3:30 Dr. Jeremy Stevenson- Neuro-Rehab-pych Did cognitive screening test

4:00 Dr. Knolla, Dr. Hardin came in. They were just doing rounds, but they did say that my potassium level is still good, so we are sticking with the pills, no I.V.

PT and ST

9:03 PT- Nu Step for 15 minutes. 857 steps and my right knee is now cooperating and staying straight instead of bowing out.
9:32 ST- We played Lumosity and showed the new student how it works. Need to ask her name though because I have totally forgotten.
10:37 Successfully used slide board to transfer from and back to wheelchair.

Morning

First off, I need to thank everyone who has stood by me throughout this whole mess, the people who have visited me and kept me company, brought gifts and balloons and flowers. Thank you everyone for your support. I want to especially thank those of you who have supported my parents. I know that although this has been hard on me, it's been even harder on them. From the very bottom of my heart, thank you.

You know things are looking up when you can finally get dressed all by yourself. I slept well last night, still not able to remember my dreams again. Hands are a little less shaky this morning, which is awesome. PT at 9 so I gotta run for now.