Monday, November 29, 2010

visitn'

I won't be able to be with Ken as much this week. So, f anyone could take some time to go see him or call it would be muchly appreciated. I probably won't see him at all Thursday, though he will have visitors late that afternoon.

Be well, everyone!

Sunday, November 28, 2010

Thanksgiving

This post is a bit late. It's been a busy couple of days. Ken was home for Thanksgiving and yesterday. His sister Lisa, brother-in-law Mark, niece Emily and nephew Daniel were here. His mom and dad, my dad and sister (and my dad's dog) were all here. It was great, but hectic. Lisa's family took Wyatt (Gus was getting over a stomach flu) bowling (candlepin and regular!), to a game room and to Friendly's. He is still talking about it.

On to thankfulness. I hope that I have made it very clear in my previous posts how much your support has meant to us, and me. I am generally a relatively private person, I don't have a huge circle of friends, and my life is pretty quiet. I told Ken I was only going to do the blog if I had to.

Then everything fell apart and I had this instant lifeline. And the lifeline had me. Not only was I being taken care of by my family (in this I include Ken's), and friends, but I was also being boosted up by people I didn't know, hadn't met.

I thought I would be really uncomfortable with a lot of people knowing my business. I didn't want to feel like someone's tragic reality show fix. And I think there is a bit of that in this. Not in a morbid way. I think we are all, understandably, fascinated by other peoples' lives, joys and tragedies. Seeing something like this happen to someone else helps us to think about it, how we would react, what we would do. Live through it at a safe distance. And, hopefully, reminds us to appreciate all the days we live without something like this in our lives.

So, in conclusion, to put it succinctly, I am thankful that I was made to feel less alone. Because believe me, when I could finally breathe, or do anything besides be stunned, I knew you all were there. And so did Ken.

To put it even more succinctly, in fact in list form, here are the things I am thankful for:

phone calls, comments on the blog, e-mails, cards, gifts, love, prayers, raking, food, babysitting, visits, pictures, rides to and from the bus station, housecleaning, pumpkins (FYI-smashing them? against a tree? great way to get out frustration, anger etc. you know, if you have any in your life.), offers of these things and more, Kenapallooza (more on that later), and all the things I am forgetting.

I think that's it for me. It seems so little. Ken has said he'd like to do a blog about this as well, but just in case he doesn't (he is kind of busy), I think I am safe in saying . . . him, too.

Tuesday, November 23, 2010

up and down

This week started out . . . well, as Chrisanna (OT) put it, "the word of the day yesterday was melancholy". Yesterday was a pretty hard day emotionally. Ken was feeling sad, and frustrated. I was feeling the same. Both wanting to make it better for the other person, wanting to come out of the hole. Ken said something like, "I am ready for the magic pill now". Me, too.

Then today I saw him walk with a cane. I'd seen it before, but this time he had very little help. I yelped. Ken asked if I was going to do that every time he took a step. I think I did. Then Joanie Showed me how to help him, it was wonderful. I could feel him adjusting his weight, and correcting himself. The he and Joanie tried the stairs. He did wonderfully. Up on side, down the other. Several times. It was what we needed.

Oh, and, apparently there is some sort of bacteria growing on his skull so they can't use it and are putting in a plastic prosthetic instead. Yup. He's getting a CAT scan and they are getting measurements from that and will, using those measurements, be able to mold the plastic for his skull piece. Now, you know you've been through a lot when the thought of plastic instead of skull in your husband's head doesn't really phase you. But I do have to ask, did they put it in tupperware, or ziploc? A gum wrapper? I mean this is a world renown hospital. I guess we're doing better than the woman who's skull got thrown out when she had her craniotomy in Mexico. Yup, again.

Saturday, November 20, 2010

UNUMANS

OUR LEAVES ARE RAKED! OUR LEAVES ARE RAKED! A bunch (a big bunch) of Ken's friends from UNUM came and cleared our yard of leaves. Even the driveway circle. It is gorgeous, fabulous and green (ish) now. Thank you! Thank you! Thank you! Ken and I are both moved and overwhelmed by the love and support of all of you.
Not to mention the Tony's donuts.

Then we had a very emotional good-bye. Everyone (except Gus) crying. Ken could barely talk. He just kept holding Wyatt and kissing him. I held them both. Home soon, please.

Friday, November 19, 2010

Raking

Those amazing Unumans are coming over tomorrow to rake the yard. A not un-daunting task. Ken is coming home for a visit. It should be fun. He will look down from his Evita perch (I was going to do Juliet, but Evita just felt more right somehow) and sing of injustice and raking.

He's been doing really well. Walking with assistance (a 4 footed cane and an OT or PT). Moving his leg, arm, and squeezing fingers. I've been catching up, occasionally, on Dog Whisperer. Which has been giving me some great parenting tips. Stay calm, give affection, maintain dominance, and exercise them frequently.

Thanksgiving is coming, we we're gearing up for that. Then the skull replacement after that. It's going to be busy couple of weeks.

Thanks for the visits. He really looks forward to them.

Wednesday, November 17, 2010

Singin' in the Rain

Sent Wyatt of to school with a little soft shoe in the rain. Went to PT to witness Ken walking, holding the hallway handrail and with a lot of assistance from Shelley (PT), but he was doing it. The some wheelchair slaloming, which was funny. I felt so bad for him, as he is not the best at spacial stuff and she had him weaving through these little cones on the floor while looking up to find and identify letters. Did great with the letters, but a couple of those cones got clobbered, though not many.
Tess brought Thai food. Julie brought Helen (her daughter) to visit. Then Sara and Michael brought just Wyatt for a visit. Wyatt loved it. He got some one on one time with Dada and helped Chrisanna (OT) do her therapy with him. W was so excited he told me about it again at bed time. I was telling Wyatt how Dada sounds a little different now and moves a little less, trying to coax him into a conversation about how he was feeling about all this. Wyatt interrupted me and said, patronizingly I might add, "Mama, we love the people in our family. Dada is Dada. I love him all the time".
Simple, no?

Monday, November 15, 2010

Sunday, November 14, 2010

Ramps, pizza and small bathrooms

Visit accomplished. Got him into the car without a hitch. Was having trouble getting the wheelchair into the car when (and I am not joking) a cowboy came by and folded it up and put it in the trunk for me. He even TIPPED HIS HAT! We drove home, with Ken feeling a bit carsick. He's been complaining a bit of some dizziness when he rolls over in bed, we think it's because that bit of skull is missing. It's messing with his equilibrium a bit. But we successfully got him home. Thankfully it was a nice day because we had the windows rolled all the way down to get some fresh air.

We drove into the driveway and there were Jamie and Stephanie (friends from Boston), Michael and Sara, and the kids. We got him out of the car easily. Getting him into the house was a bit harder, but fine. Ken's Aunt Ellen and Uncle Frank had a temporary ramp they loaned us (thank you!). There would have been a lot of jostling without it. We sat outside and had lunch. Ken wearing his helmet, yellow lensed aviator sunglasses (given to him at the disco party by Shane) and a baseball hat (given to him by Jamie for his B-day) that says "old as dirt". Mostly we just chatted and enjoyed it. But, boy, we have a lot of thresholds in our house and our downstairs bath suddenly gets exponentially smaller when you put a wheelchair in it. Hopefully he won't need the wheelchair in the house when he comes home.

Ken and I talked in the car on the way home. We were both feeling the same. A bit of, as Ken put it, ennui. It was very hard to bring him back. Very hard.

The thought as far as discharge is that the operation for his skull will be on 12/6, and he'll be at MGH for 3-4 days. He may go back to rehab if they feel he needs it. I guess anesthesia etc., could make him lose some ground, but my impression is that it would only be for a short stay to, as they say, get a "tune up".

All I want for Christmas . . .

Friday, November 12, 2010

Home Again, Home Again (for a day)

Ken earned himself a day pass. He's coming home tomorrow for most of the day. We are all very excited.

Had a Team Meeting today with Dr. Kazmi (head of physical medicine), Holly (casemanager), Mallory (speech), and Joni (PT), his OT was off. I am glad he is working with all of them. They all seem very invested and good at their jobs. Everyone had great things to say about his progress. They are very pleased.

We even got a date for his skull to be put back in, December 6th. Ken and I are both having some intense anxiety about that, or at least anticipating anxiously that we will have anxiety about it. It is a relatively easy procedure, they say. I giggle anxiously as they say it. It means going back to MGH, can anybody say PTSD? I can, it's Massachusetts General Hospital.

Love to you all!

Tuesday, November 09, 2010

He moved his leg, but he didn't know it

So, there we were, Ken, his OT, and I. He had just gotten into bed and was trying to get comfortable. I was looking down at his legs, trying not to help him. Then I saw his leg move. Not a tiny little move. An outward push on top of the bed. He moved it about a foot. I looked at his leg and honestly thought, "is that his weak leg? that can't be his weak leg.". I looked up at his OT. She was looking at the leg in the exact same way. I said, "did you see that?". She said she had. Ken was blabbing on about something and I kept telling him to be quiet so we could process this. Because he hadn't even noticed. Just like it would normally be. When I could finally get him to listen to what he'd done, he just gave me a shy grin. A shy, lopsided grin.

Then his head doctor came in and he did this great kick, from his knee. It was a good day. AND this was at the end of the day when he was tired. yeah.

Monday, November 08, 2010

Short Visit

Due to a hectic day: got mom to the airport, Wyatt's school got canceled, my visit with Ken was short. The boys are still BIG fans of the movable bed. Really, really, big fans. They ate lunch in Ken's room and got to meet Chrissanna, his lovely (I swear she looks just like Amanda Peet http://www.imdb.com/name/nm0001605/), and good at what she does OT. Wyatt even talked to her without doing it from behind my knees. Ken seemed to be having a very sleepy day. And threw up in the morning, but felt better during the day. His blood pressure's been low so they are going to put him on IV fluids. Don't know why they can't just remind him to drink or have me/those with him remind him to. Anyway, onward and upward.

Saturday, November 06, 2010

Today was Saturday

Ken's brother Jeff, wife Beth, and two ridiculously gorgeous and charming daughters Griffen and Samantha, came up this long weekend. Wyatt and Samantha were joined at the hip as were Griffen and Gus. Quite cute as always. They boys had a blast with them, and are incredibly happy and tired. And sad to see them go, as am I. As is Ken.

Ken had a good last couple of days. He was able to push his left leg enough to move the pedal of his therapy bike. His balance his getting better. His smile is still lopsided, but I like it. He is still amazing me with how he is coping with this.

The boys came to visit, a bit longer this time. They finally discovered they could move the bed. Instantly obsessed. But they also got some cuddle time with Dada, and got to talk and ask him questions. Which is great, but hard for Ken. He said that having Wyatt ask him makes his situation that much more real. Despite that Ken answered the questions, didn't deflect or distract. Good father and smart. He is currently watching a curious amount of HGTV.

Thursday, November 04, 2010

The Moon Walk Was Rescheduled

Tomorrow is the autoambulator. Today he pulled my hand to him. Strong like bull. I was doing some range of motion and wasn't paying much attention, was looking at the TV. Suddenly he pulled my hand into his chest. I turned to look at him and he said, with a sheepish grin, "did you feel that?". Yes. I. Did.

We spoke to his head doctor Dr. Kazmi who said we could start working toward passes to leave the rehab. We are hoping that means even if he's not home for Thanksgiving. he'll be home for the day.

Thank you to everyone for sending the cards and gift baskets, and toys, and food, and and and . . . I am, under good circumstances, a HORRIBLE thank you card sender, so I am even more horrible now. But I wanted you all to know we are getting them and appreciating them. And the ones that aren't perishable are on his wall. Oh, and the whoopie cushions are a new favorite for the boys.

Wednesday, November 03, 2010

Another Day in the Life of K to the E to the N.

It was another day. PT, OT and Speech. All good. Ken moved his whole arm with his shoulder. The OT showed me how to hold his arm to support his joints as he moved it and said we had to fight gravity for him. And suddenly I had this glorious picture of Ken bouncing around on the moon, waving and jumping. In his Superman underwear. And his red slipper socks.
I will quote him today. Today he said he was, "hopeful". I am hopeful, too. I am hopeful and grateful and determined. We are all clumsy. We are all destined to fall, have scars, be bruised. Nobody gets through life unscathed. So, I am scathed. I am scatheful, but I am less scathed than some. I still have my husband, my sons still have a father. Scathes be damned. I will cry while listening to dumb love ballads, I will be angry, but I will also remember the house full of people I just had come over to help clean my house. People who love Ken. It is all very heartening and humbling. Hopeful. I will follow his lead.
Tomorrow I'll see him on the autoambulator. But I will imagine him on the moon.

Tuesday, November 02, 2010

Salty Potatoes and a Shrug

I wasn't able to be there much today. But we were able to take a bit of a walk outside and do some range of motion work. Ken loves that. I make him walk in bed. He moves his right leg and I move his left, then we march. It's all very silly looking, but it makes me feel like I am helping him heal a bit. We both had a bit of a moment while doing it. Him saying he thinks I don't think he's trying hard enough (not true), me saying that I think if he doesn't get better it's because I didn't do enough. We talked and cried a bit, then watched Oprah interview Ricky Martin. They were both very earnest.
We had our first parent teacher conference with Wyatt's teacher (LOVE HER) who basically said he was doing great. She said he's very compassionate and caring, that he advocates for his classmate Adam who has some learning disabilities. Academically he's just where he should be. We tried to speaker phone with Ken but got cut off. I told him all about it later. We are very proud.

Reautoambulated

I wasautoabulated again this morning , with lots more padding(thank god)n BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Monday, November 01, 2010

wrong number

I think I gave out the wrong number for Ken's room, it's 662-8571. The general number is 662-8000.

Ken had a good day. I am learning to transfer him from his wheelchair to bed and vice verse by myself. It was a bit tense at first, but as he gets stronger it gets easier. He's been using the Bioness (http://www.bioness.com/Home.php) for his hand in OT, and he got a shower and did it mostly himself. PT was mostly the parallel bars and practice sitting up straight and finding his balance. His face is definitely moving more symmetrically now. He's still got a lopsided smile, but it's less lopsided.

He got a few visits today from his friends at UNUM. It's been fun meeting the people I've heard so much about. Though still hard to get the right name to the right face. There are just so many of them. The visits definitely keep up his spirits.

More tomorrow . . .