How we celebrate the Season

Michael making the Christmas calls with Sara.

I have a love-hate relationship with the holiday season. I love the season itself, but hate the commercialization and how crazy it makes most people. It is supposed to be a time of family, of joy, of peace. I run around singing christmas carols, happy to be singing. I walk through the store as harried people grab ingredients on the run and I take my time and smile. I enjoy seeing the sweet things of Christmas out and around.

But how we celebrate the season has slowly evolved away from the conspicious consumption and pressure-laden crush of the calendar. We've always celebrated the different parts of our heritage (Swedish, German, Jewish) as components, but never as a whole. Since I got custody of Michael and Sara, however, we have incorporated more of the elements of our heritage as complete parts. For example, we celebrate Christmas as the Kolliners did at Sunnycrest, incorporating the Swedish elements brought from the Blomquists, and we also celebrate Chanukah. The last couple of years, however, we have taken the time to learn what the Christmas season is really supposed to be - a season. And, we found that it does not end on Christmas Day - it actually starts on Christmas Day.

While researching the "Twelve Days of Christmas" I found that it runs from Christmas Day to January 6th when the 12th Night Feast would be held. It would encompass the celebration of the birth of Christ with the coming of the new year and the passing of the Winter Solstice and end in a feast on the 12th Night. So, I thought that was more appropriate then starting our Christmas season after Thanksgiving. Nobody knew Jesus was going to be born until he actually was. The celebrations of which started that night. Seems to make more sense to me. So, we as a family adopted it and have made it a tradition.

We've never really done any preparation before Christmas Eve. We have for years gotten the tree on Christmas Eve, decorated it that night, and kept it up into early January. In reading about Christmas with the Kolliners at Sunnycrest that is basically what they would do. But they would cut down the tree a week or two ahead of time, stash in the basement, and bring upstairs on Christmas Eve. This year I was the last person at a tree lot in Graton before they closed for the season. I cut down a 15' tree, picked juniper branches from a huge pile of cuttings and found Mistletoe on a tree. They guys were so nice. Amazed that I cut that tree down myself and managed to drag it through the grove myself, they gave me the entire order for $45. I couldn't believe it. You should see this tree. So beautiful.

Sara wanted us to put up every decoration we have, and wanted a big tree. Well, we have the biggest tree we've ever had and every ornament is on it. The living room is just beautiful. I hand-made all the juniper garland for the stairs and front door. And I made a mistletoe ball for above the door. Her face lit up when she saw the tree, bare of ornaments still, but huge. Just what she wanted. We didn't have any presents under the tree this year, but we had a tree. A beautiful tree. Makes me smile just to walk in the living room. She loves being in there with it.

So, during this season we will keep up our tree, welcome friends into our home (like we always do anyway) and I will bake and tell stories about family memories from Christmases past. On Christmas morning I made the traditional breakfast from Sunnycrest. On Christmas night I made a jewish dinner of braised brisket, latkas, apple sauce, creamed peas and we talked about what Chanukah means. On Christmas eve we trimmed the tree, ate hamburger helper and I gave the kids each a small present and talked about what Christmas means. The night after Christmas I gave the kids each a jar of Nutella and we talked about what chocolate means. :) (Sara can't smell right now, but she can taste...so she got a little off my finger.) I normally do a Christmas ham for the Swedish tradition and stick a knitting needle in it with a red ribbon and write Glad Jul on it in mustard - serve with red potatoes and white sauce, the day after Christmas. Finances are too tight to keep up with too much celebrating, so I'll just bake some more of the Christmas breads and cookies from Germany, Sweden, and Norway like my Grandmother used to do. The kids love it when I bake and would rather that I baked something new each day during the season then all at once. So, that's what I'm doing. It certainly takes the pressure off (financially and otherwise) and gives us a chance to share the experience and enjoy the time together.

The rest of our family will be seeing Christmas cards coming what most consider to be late. Its not an oversight from us, but a sincere desire to share our best wishes while we celebrate peace, joy and hope together.

And now, for some pictures!

Nice big open space. (Sara's piano is out being repaired. More on that later.)

Wow that is tall. Taking the netting off of the tree.

Net is off. Look at the beauty!

Sara wanted to come out to the living room after the tree was up so she could watch us decorate...we didn't want her peeking.

She was so happy she was giggling when she saw the tree and saw how big it was. I asked her if it was what she was wanting and she answered "yes" with eye blinks.

Here's the floor around Sara after the tree fell on my head. No pix of me under the tree. But I felt a lot like the wicked witch under the house in the Wizard of Oz... We lost about half of the ornaments to breakage - but they were old glass balls. We only lost a couple of special ornaments.

But...we didn't lose the Christmas Gherkin!!! (Swedes rejoice!)

Share with us how you celebrate the season and I'll read it to Sara.

Glad Jul!

What a difference a year makes...

During the holiday time it is natural to sit back and reflect on the past year. As you all know, it has been focused on Sara and her recovery.

I found myself sitting in her room the other night and marveling at this girl. She's so beautiful and smart and her eyes are just as bright and knowing as they've always been. She was teasing me with her eye and facial expressions, trying to get a rise out of me when she crossed her eyes. When she did, she'd burst into silent laughs and contorted happy faces.

I put my hands on her every day (except when sick - which I have been lately.) I like to feel the softness of her skin, warmth, and the strength of her limbs, despite the current quadriplegia. I was telling her how incredible it is that she still has the muscle mass and tone that she does, given the 14 months now in the bed. Then I really started thinking about how far she's come in that time and it really came home to me when I realized just what she could do on Christmas Day last year, compared to this year.

Last year she was 61 days since her accident and stroke. She was healing from another brain surgery, was on the ventilator, and someone had to be within a few feet from her 24 hours a day to care for her quickly enough. She was on constant IV medication and pain killers. She and I were working on perfecting her letter board, but communication with anyone but me or Daniel for more than one or two words relating to her care needs were too much. She had very little facial movement at all and she didn't move her eyes laterally yet. Her face was mostly expressionless, and looked like she was wearing a mask of her own face. She smile she started on Christmas day looked pained and twisted, but she was smiling.
Kitty visit for Christmas. She had no movement except for the start of smiling and her up and down eye movements. She was still in the neck collar and on the ventilator.
But now...this year...

No ventilator. Moving her head. Smiling. Laughing. Lifting her head. Moving it side to side. Sticking her tongue out. Lifting her shoulders. Very strong cough that causes her to lift her legs and arms. Full facial expressions and eye movements.

'Twas the Night Before Christmas...

What an eventful day.

It started off with one of the nurses, Robin, calling in and informing us that she had a family emergency to deal with. I was promptly awoken at just about 8am, started taking care of her, yadda yadda (I'll spare you the details).

The day was pretty smooth and normal until about 5pm... when mom came home with a veritably huge christmas tree (15'... no joke) and we pulled all the decorations out of the garage. We wheeled Sara into the living room so she could watch us decorate it... Me, Mom and Paulette all decorated the tree while sara watched and chatted away on her talk-box.

Well, it was pretty commonplace until the tree fell over.

Sara was fine, but not more than a foot or two to her right was Mom, who was organizing ornaments, which happened to be right where the tree fell... ornaments and all. A few ornaments survived the ordeal, but most of the ones on the tree were smashed (good thing most of them were just run-of-the-mill colored sphere ornaments, and those that weren't didn't get damaged). One of the ornaments actually landed, completely intact, on top of Sara. Again, she was completely fine. In fact, not only was she completely uninjured, but she was laughing so hard at it all that we had to rush to get the tree up so we could suction her so her sats would come back up.

Well, we got the tree vertical again then tied it to the railing for the stairs with a few guy wires. Hopefully it'll stay.

All in all, though, today was pretty calm, and I have to admit, I'm glad that she's home for christmas this year, because I know that's something she didn't get last year. It's a hell of a lot better with her here. Crazy falling christmas trees and all.

-Mike (The Brother)

Dusty

Dusty is a pretty incredible animal. He has started watching over her at night and is quick to start yelling when she is in distress.

Not many people know the full story about Dusty. Sara got him when she was 5 years old. My mother said that it is important for a child to grow up with an animal and 5 years old is a good age to start caring for one. So, at age 5 I took Sara to a friend of mine who had a new litter of Maine Coon kittens. Her first inclination was to chase around the room trying to catch a kitten. I told her to stop that and sit in the middle of the room. Her cat would come to her. After a few minutes, the smallest of the bunch ventured out from beneath a piece of furniture. He strode to Sara as if he knew where he was going. He crawled in her lap and curled up. Starting to purr I told her that her cat had just chosen her. We wrapped the tiny cat in a wash cloth (yes, he was that small) and took him home.

Once in the house and released the ball of fur took off for the nearest dark space under furniture. Several minutes of peeking and hunting for the little fluff yielded nothing, until from beneath my husbands desk came a faint meow. Sara walked over and squatted next to his computer chair to find the little kitten staring back at her. He had tangled himself in the computer cords and was afraid to move. His big gold eyes almost hovering in the dark mass of wires and dust bunnies that frequented the breeding ground below Tracy's desk. We extracated the small cat and, shaking the dust off of him, one of us commented he looked like a dust ball. That immediatly became his name, as did many variations...dust ball, dusty ball, duster, dust buster, dustaroo, duster kitty, mister kitty, old man and bitch face. The last one was given to him by Michael while Sara was in the hospital. Seems that every time i'd come in the house and he could smell her on my clothes and she wasn't there he'd read me the riot act and bitch at me.

This cat took to Sara like no other animal i've ever seen. She could put him on his back, carry him around by his forepaws, carry him like a baby, cuddle him under covers, wrap him in a baby blanket and put him in a stroller. She'd sleep with him like a teddy bear at night, and a rag doll during the day. The cat's favorite place to sleep has always been ON Sara.

He has traveled from California to Texas and back, San Diego, and many locations in the bay area. He has gone for long car rides and acted as navigator, driving coach, and lap warmer. He's flown back and forth on the airlines, always calm and never medicated. As long as he was with Sara nothing seemed to phase him.

When we got Michael's dog (when was 10) Dusty took it upon himself to school the puppy on the heirarchy of the household. Despite being declawed on the front, he handily nipped at the dogs nose and ears until he showed the correct amount of respect for the cat. I don't think the got along, per se, but they do live together well.

Then came my puppy. Dusty has never shown a maternal/paternal instinct before, but he cared for Gracie as if she were a kitten. He washed her face and ears. He'd stay close when she was cold. He'd go outside with her when she was potty training. He'd play with her until she got rough then get cat on her and she'd settle down. Gracie came to us unweaned, well below 9 weeks, and in danger of failing to thrive. When she was not tucked in my shirt for warmth, she was curled up with Dusty for warmth. The puppy spent several months on gentle formula, cat milk (canned), and baby cereal while her stomach matured and she started to thrive. The whole time the cat watched over her. he'd back the other dog off of her if he was bugging her too much.

This cat has been as large as 21 pounds at one point - not fat - just a large Maine Coon. He hovers between 12 and 16 these days, depending on how healthy he is at the time. At one time during Sara's hospitalization he stopped eating (actually, did a couple of times) and lost a third of his body weight in just a few weeks. His fur got dull. He didn't clean himself as well. he didn't seem to really care about much. When we would take him to the hospital he'd perk up and start eating, grooming, and talking again.

Well, since she's been home the cat has done incredibly well. he is up to 16-17 pounds, eyes bright, coat shiny, and a happy, purposeful stride about him. It took him a few weeks, but he has taken in about Sara and doesn't spend much time away from her. Nightly he is in her room, taking the night shift and cat naps and watches over her. When I come in for her 2am breathing treatment he gives me report, meows at me a few words, goes to the box (in the other room) and catches a big drink of water. He then comes back and takes his place on the chair in her room, facing her.

During the day, when nurses are around, he can be found sleeping on her bed - getting his rest for the day - so that he can be awake for his night shift.

I am amazed at the love this animal shows for her. Her condition is hard for us humans to understand and we have the benefit of information and discussion. He has had to come to terms and find his own way without anything other than his love for Sara to guide him. It means so much to her to see him walk over her, come check her face, and curl up around her feet. She knows he loves her and he is going to help her in any way he can. That equates to "fur therapy". He lays down next to her and she can feel him - his warmth, his purr, and it makes her truly happy. It always has.

I'm just amazed at what an amazing animal he turned out to be. From that scraggly little kitten being drug around by his tail by a 5 year old, to a gorgeous large cat with a chatty disposition and a large heart walking all over the girl he loves just because he can.

Finding our rhythm

Sara's been home a couple of months now and we seem to finally be finding our rhythm. It has helped so much to have the three nurses. We are still way short of her entitled nursing hours, but it is very manageable.

We've been able to start adding back in the range of motion exercises, speech therapy exercises, and work with her more on communication. Before we had the three nurses all the nursing items were handled by either a single nurse or me - and that left no time or energy for anything else. It worked out fine, though, as Sara just needed some nice rest time and to settle into her home environment.

So, now, the load is shared among the three nurses, Mike, Michael (as needed), Don (as needed) and myself. And, due to her breathing getting so much better and maintaining her oxygen saturations better she has longer periods of not needing suctioning. I don't know if you remember, but the number of suctionings per hour was a deciding factor for whether she could go to Vallejo, when she could move to Rossmoor, if she could come out of ICU, and when they felt she could come home. So, I do watch that frequency as an indicator of her progress or current status.

I do think I need to get her into Kaiser for a little check up - get a good listen to her lungs and make sure we're all clear. Her secretions are good and she coughs out any junk she accumulates, so I'm sure she's ok. I just like to make sure, as respiratory issues are her greatest risk.

She remains in good spirits, although she hasn't had any visitors. I told her that it is just going to have to come down to her reaching back out to them, communicating with her computer, and helping people start to figure out how to relate to her again. That and we will have to start really getting her out of the house and going places. Let people see her out living. Its still quite an event to try and get out of the house. We don't yet have any appropriate wheelchair-accessible vehicle and she's still in a manual chair. Last time we took her to the hospital we howled laughing at the jury-rigging job we had to do to get all the required oxygen and equipment to hang off the chair. It took us two hours to get her packaged and transported and back into the chair, was at the hospital only 45 minutes, then another hour and a half getting her back the other way and to home and bed. Luckily we were all laughing at how completely inept we looked man handling a laughing quadriplegic in and out of a volvo.

I love how she laughs at everything. We struggle, she laughs. We mess up, she laughs. We curl up our noses at something in her care, she laughs. She has told me that since she was forced to slow down she can better see how comical everyone else's toiling really is. She has stated that its easier when its slower.. She may have something there...

I finally got through the mountain of paperwork, mail, and related junk that has accumulated around the house for months. I get mail from the box and it gets tossed onto yet another pile or box. Well, I finally got it all opened and organized. Now I can start to get the filing, and bill paying organized and done. I'm real bad at paying bills. I just can't seem to either remember to or discipline myself to stop everything and sit down, balance everything, and write checks. Before Sara's accident I was doing it. Had come a long way on dealing with finances and getting disciplined - I was doing it with her as she did her stuff, too. So, anyway, I've asked another friend of mine who is real good about it to help kick me back into rhythm with it all. I can't keep waiting until something is either shut off or my phone is ringing incessently for me to sit down and handle the household items. Ironically, i'm like clockwork for the items related to Sara and her care. Bills for her stuff and taken care of as soon as I get them. I guess I'm kind of thinking i'll get to the rest of the stuff soon, then time gets away from me.

So, having more help around here with her is making it possible for me to get back to the business of taking care of the whole family, not just her. And, getting back to the business of doing work stuff at night and weekends, which keeps them happy.

So, I'm going to get back to it. Just finished the piles, started dinner and now will start getting the piles to their respective correct area. I have two major ones - Current Bills and Sara Action Items. I have several applications and supporting documentation to submit for different services - new and ongoing. And getting the current bills all in one pile (the first time since we've moved into this house) will allow me to but them into my budget spreadsheet and start handling things a bit neater and quicker. It does feel good to look across the room, from my office to the kitchen, and see a lot less things sitting there, waiting for me to get time or energy to handle. Little by little, in our own areas in our own ways, we get there day by day.

Right now Sara is sitting up in the wheelchair in the living room watching Sunday football. Yes, Sara likes to watch football. She and I used to lay around on the couch on Sunday afternoons and do it, too. The team really doesn't matter. It's just nice to watch good looking, in shape men, do what they love and ooze testasterone. Then we'd watch Extreme Makeover Home Edition. She's on me to put in an application for her and all the paperwork. Week after week we watch other people and families with huge challenges get help to change their lives and make things easier.

One reason for my hesitation is that you can't be actively involved in a lawsuit when you apply. Well, that kind of holds us off until our legal actions are settled. There are people responsible for parts of what happened to Sara, and certainly for how bad it got. The neurosurgeon at Santa Rosa Memorial who missed the vertebral dissections in her neck and let her have a stroke, then delayed sending her to another hospital because he didn't think she had insurance. He wasn't qualified in Trauma, but yet was the person standing there making decisions based on his limited understanding of Trauma or experience as a Neurosurgeon (only been one for 6 years.) And he barely examined her and just went home. Yeah...we need to get this settled before applying for an Extreme Makeover. Maybe we'd be able to get what we need for her ourselves and let ABC/Sears help others who can't find another way. She wants to look in his face - let him see what he missed and let happen to her - through his complacence/negligence/limitation - and be held accountable the only way he can. Too bad you can't have a doctor change places with you so they can REALLY know...

Ok. enough on that. have to check on dinner and keep going with the piles of paperwork.

More soon...

Article - Sara Baker continues to improve

Sara Baker wanted to tell the doctors, "I am here," when they thought she was in a coma.

http://www.theoakleafonline.com/2008/11/20/sara-baker-continues-to-improve/

I'm so sorry

it seems that i've left so many people hanging regarding Sara, and at the same time stopped the slow of support and nice comments for her. I've gotten entrenched in trying to be all things to all people and do all things instantaneously that I am finding that I am getting nothign done for anyone regardless of the time involved.

So, anyway. Enough of that. I'm just pretty depressed at everything - not with Sara. She's fine. Well, a little with Sara's condition. I want her better and its hard sometimes seeing her this way. Don't hate me for honesty. Stand at the foot of her bed day by day and not have the memory of her flying through the air, beautiful and strong, executing a perfect Tae Kwon Do movement quick to memory while the site of her lying there fills your eyes...

I have a lot of update on her to post up here. There have been some very neat things happen for her. (got to find out about part of the family she's never met and that they know about her and think about her - and have sent a little help her way.) Some changes to her condition - little things - more time on room air - some more trace movements. An update on the legal front. An update on the home front about Michael. And some holiday notes.

So, I will sit down and get back to blogging. I think I need the outlet and to focus on the positives again, too.

I do wish her friends would come around again. we're trying to get her out to see you guys, but I can't do that very easily. I know its hard to see her like this, but its still Sara. She has just as hard a time relating to you with life moving on, but please don't forget her. She misses her friends so much. And I miss you guys coming around, too.

Ok. enough sad sack crap.

What a week...

Sara's been fine - great actually. I have been working my tail off. Not a bad thing, since I still have plenty of tail to spare.

On the nursing front we have some good news - Nurse Martha is going to expand her hours so I can go to work at my regularly scheduled time each day. She will come in at 7am daily, but work until 0930 Monday, Wednesday and Friday and until 4:30 Tuesday and Thursday. Nurse Stacy is going to be joining our schedule. She will work Monday, Wednesday and Friday from 5:30 to 11pm. Nurse Robin will continue to anchor our schedule with Monday, Wednesday, Friday from 9:30 to 5:30 and Saturday from 5:00 to 10:00am.

This is great for many reasons: more nursing care for Sara; with more nursing care covering afternoon hours I can work on rehab items with her and still have someone to help and to cover her basic care items (which is too much to do solo at the same time); more rest for me (because I am exhausted constantly); more time to handle the regular running of the household. But mainly its best for Sara because we'll have more help to move her, exercise her, help her socialize, etc. I know she worries about me being so tired all the time. She thanks me almost every day for bringing her home, even though it is hard sometimes or I never sleep. I tell her that I wouldn't think of doing anything different - she's the best reason I know of for everything.

On the Team Sara front - her Dad is going to take over Sundays all day. He had deferred Sunday to Daniel and he doesn't participate in her care anymore, so Mike is going to take the day. That will be good for Mike and Sara, as they will get more time together, as well. And Mike also volunteers on Saturdays (and sometimes works) so his time with Sara won't be impinged upon.

Kellie continues to be my grounding angel. She checks in with me every few days to make sure i haven't gone giggling around the bend. I can always count on her to come fold laundry, bring the girls by to visit Sara, or just come over and make a pan of Pasta while I catch a quick nap.

But I have to say that my boyfriend Don has turned out to be my rock lately. It doesn't matter when or what he will show up and take care of things for me. He knows that asking is something I have a real hard time with, so he manages to put himself right in front of me whenever I might need help. He came down from Sacramento early this week so that I could go to work for a major meeting the last two days. He's taken care of Sara when the nurses weren't here, let me work on my presentations and the mountain of stuff to prep for the meetings. He's doing everything he can to help me keep my job. He has been working behind the scenes with me (and so has my son Michael) helping me work on my backlog of support tickets and projects. They're not getting paid, but helping me anyway, as losing my job would be devistating to this family.

Anyway those are the major highlights...ooh...ALMOST FORGOT THE NEATEST PART!!

Sakky and the Deviant Art community started a fundraiser to help us buy a different computer interface for Sara. It uses brainwaves, facial movements and eye movements to give her complete control of her computer. It should allow her to start slowly working on her artwork again. Well, in only a few short days they have reached the dollar goal and raised over $2000 for the Cyberlink Brainfingers interface. I haven't even told Sara yet. I plan on getting her onto Deviant Art (somehow) tomorrow and reading posts and messages, well wishes to her, and the story about her, then the news of the goal reached. She can't browse the site herself yet, but she will get such a thrill reading it herself with a little help from Mom. Sakky - you are such a sweet woman and a great friend to Sara. I can't express enough appreciation to you for remaining her friend through all this.

On that note I am going to close this post. I have a nice bed with clean sheets, a warm fluffy dog and some old comfy pillows calling my name. I think they saying something about some sleep...
And after everything is settled in the house my boyfriend will come in and wrap his arms around me while I sleep.

Happy Smiles

Sara has had quite an eventful couple of days. All in a good way, mind you.

Her high school robotics team had a fundraiser pasta feed last night and I asked her earlier in the week if she was ready to get out and see people again. She gave me an emphatic yes blink and when I asked her if she was sure she gave me a very long yes blink. I think the girl was truly ready.

So yesterday I raced home from working late, wrestled her into actual clothes, packed her and her gear into the truck and off we went. I have to say, that it was not the most organized move, and certainly not graceful, but I got her there (and back.) Note to self: must look into wheelchair van...

She looked great. Her face was beaming, her eyes sparkling. She smiled and laughed at seeing familiar and happy faces. The first face she shined for was Dr. Immel. As soon as she saw him she started moving her head and laughing. Then she saw Mr. Weaver and soon many faces, known and new, were coming to greet her. We tried to stay as low key as possible, but that's hardly possible after everything that has gone on and wheeling a giggling quadriplegic around the room.

We took up a place near one of the walls, so I could plug in her speech computer. That turned out to be a lost cause, as she had to focus on it to communicate anything and could barely hear anyone talking to her due to the ambient noise in the room. I soon abandoned her even worrying about it and went back to straight blinks and being able to look around and take it all in.

I know it was a lot for her to take in and process. It was even a lot for me. People I didn't even know were coming up and telling her how they've been following her progress, how well she looks, and offering best wishes. Of course, everyone we do know came by and were thrilled to see her out and looking so well and happy. She truly was sparkling and joyous to be there.

And then she got a surprise. Walking up to her was Daniel. He was so surprised to see her out and there. They talked for a few minutes and despite being right there I tried to tune myself into the goings on around the room. It is obvious there continues to be a deep connection between the two of them and I have to trust that they will navigate it however needed. She was genuinely happy to see him and told me later she was surprised when he walked up.

After a little over an hour there I could see that the event (and everything it took to get her there) was starting to show to me. So I grabbed her brother and we hauled her back into the truck. He rode his bike home and helped me get her back out and into bed. She was exhausted and, quite frankly, so was I after all that. But I felt so good that I could do that for her, get her out among friends and things familiar, comforting. It has been over a year since she saw most of those people, or worn actual clothes for that matter, or participated in something other than her own care. It was a very nice time for her and me both.

When I put her to bed I asked her if she was glad we went. A big smile came across her face and then a yes blink. Me, too, I told her. It was so nice to see her so happy.

I kissed her goodnight and closed the door to her room and felt the warm flow of recognition go through me - she has come so far and she's doing alright. She's ready to be back out in the world as she is, and as she continues to fight to overcome this. And she needs that socialization and exposure. And, although there are going to be people who stare, and people who she knows who find it difficult to look at her or find ways to relate to her past her current condition, it is more important that she work towards her goals while still living her life. She's ready. And taking her first step, er, outing, among those who have supported her and grown up with her, witnessed her grow, educated her, and stood with her family and held good thoughts when she was so damaged and sick, was perfect. She was able to be there to help support her brother and robotics and see people she cares about, and they could all see her.

And the pasta wasn't that bad either...

She's having a hard time dealing...

Sara is having a real hard time dealing with the breakup. She's so sad. What makes things worse is that she can't cry - can't do the physical act of crying - so she has no outlet other than talking. Since her friends have not really been coming around that means she is talking to her nurses and me over and over about it. Somehow it isn't the same.

Then today I realized something that just makes me ache for her (besides the obvious)...she seems to be having trouble with short-term memory. Kind of like Groundhog Day. Every day has been like Monday to her. She has started off the day sad telling the nurse or me that Daniel broke up with her yesterday. I didn't realize until today that she has kind of lost track of days and when things have happened. So, all week she's gone through the event over and over as if it just happened, and is not able to cry. She has not shown any other signs of memory issues (quite to the contrary). Her head nurse and I were discussing today that the magnitude of the loss to her of Daniel could have been trauma enough to bring this on.

So we've discussed a few things to try and help her through this - memory exercises, putting up a white board with the day and date on it, encouraging a blog entry daily, and giving her friends calls to see if they can stop by and give her a chance to talk here and there.

I understand that her condition is a lot for anybody to get their head around. Nobody more than Sara understands that. But its still the same Sara inside - goofy, smart, loving. She's getting better very, very slowly. But she needs something that I can't buy, medicine can't prescribe, and only her friends can provide.

Pix from a quiet, birthday at home...

Nom nom nom...cake cat Michael and the amazing balloon tongue...of DOOM...

Yo Yo...I'm so clown gangsta....

I am PROPELLERHEAD...

With my magic sword and shield I will slay you from my bed... get closer...ok...now swing your neck over my sword...

so Daniel broke up with me today Hurts a lot but I will live I am not worried that some other girl will snag him but I can only hope

One year ago today

At approximately 11:20am on October 24, 2007, Sara's entire life changed on Highway 101. She left work at the veterinary hospital with plenty of time to spare before class in Santa Rosa. She changed clothes, grabbed her bag and left in her beloved metalic baby blue Cruiser affectionately named "Maria". She drove on Rohnert Park expressway crossing over 101 and went to her bank. She pulled out a crisp, new $20 bill so she could catch some lunch after class. Then, folding it in quarters put it and her ATM receipt in her little white wallet, snapping it closed.

Back in her car she headed to the Rohnert Park Expressway on ramp to 101N, a drive she's made a hundred times, with me and alone. Traveling up the long ramp she gained speed and passed where the carpool lane and regular lane merge before meeting 101. Now she's at the long merge on 101, where the ramp slowly melts into the lane. Looking over her shoulder to the left she is picking her spot to take the lane. Traffic is light. Then she feels it - the hit. Somebody has hit her from the right. Suddenly pushed into the traffic lane and moving towards the fast lane she swerves to get back - squealing tires signal she's out of control - countersteer and fishtail right, then left. Knowing she's in trouble she does what she's been taught to do, what she's practiced with me to do - get off the road. She points Maria towards the shoulder to exit the roadway and get under control. She hits the dry grass and dirt while braking and the car rotates to face a bit left. Its ok - speed is coming down and she's off the road, the car will come to a stop and she can catch her breath and take in what just happened.

But in an instant everything is changing - the back of the car is up in the air and the ground is rushing towards her. She sees the ditch while she's already flipping in it. Then as the top of the car hits the ground it all goes black. She's spared the sound of glass breaking, the wrenching metal, the flash of pain as her neck and head take the entire force of the accident. She's suspended, upside down by her seatbelt, in a velvet blackness of unconsciousness, that is sparing her from knowledge of the car on fire or the hot fluid that has dripped onto her head and burned her, or of the frantic people trying to break windows to get to her, or of the man who threw handfuls of wet mud on the fire to keep it from growing. She didn't hear the sirens or the people calling her, trying to help her. She was spared the horrible pictures and memories, but awoke after being extracted to excruciating pain and not being able to communicate - hearing words in her head and moans out of her mouth, desperately trying to let them know she was hurt and in pain. The pain shook her and threw her in and out of consciousness. Snapshots of memories litter her mind between the accident and later that night. Little islands of awake where she was taking in everything she could hear and trying to tell us what she felt.

She hears me there off and on, and is comforted by it. I am there off and on, and comforted by it. The doctor said she was a "very lucky girl". No major injuries, no internal bleeding. She should wake up in a few hours with "a hell of a headache". She'll spend a couple of days in the hospital then come home. She has a minor fracture of the side of a vertebrae in her neck...but other than that no broken anything. Seatbelt bruise, some cuts, minor chest contusions, a little aspirate in her lungs.

The neurosurgeon comes on and is going to do an MRI to make sure they didn't miss anything. I'm letting her friends come write silly notes on her arms for when she wakes up. We take sharpie and write love yous and get wells for her to enjoy when she wakes up. The doc comes back and says the MRI is clear and he's going to send her to ICU for the night to observe, but she'll wake up in a few hours.

But she never really does. She becomes conscious after she's off the medication used to paralyze and keep her calm with the ventilator, but she doesn'st really "awaken" as in eyes open, etc. But she's there. She hears me, the nurse, the sounds of the equipment. And she also hears her heart, her blood pumping through her veins and arteries. She hears it loud and then painfully loud as an incredible pain grows in her head. She wants to scream and grab her head, but her limbs are failing her, her voice is silent. Her body is not her own as the sword of a stroke slowly slices into her brainstem. She's screaming inside, screaming for help, praying somebody hears her.

I do. I don't hear her, but I feel her. I feel her fear and agitation. I feel something is wrong and start desperately trying to get the nurse to listen, to get the doctor. She must have thought I was crazy, until she finally did and found that they had missed something, something major and devistating. Knowing the force of the accident went to her head and neck they still managed to miss the major injuries to the arteries of her neck. They missed the dissections, the tearing open of the arteries and the clots they produced. They missed the reduced circulation to her brain and the risk that those clots would break loose and travel into her brain. They didn't see it. They didn't look for it. They didn't recognize it when it was happening. These trusted hands, the doctors and nurses of the so-called Trauma Center, gave her no better care than a regular Emergency Room, but with the same complacence and lack of attention.

She should have been safe. I worked so hard to prepare her for driving, driving emergencies, every conceivable thing I could prepare her for. We practiced, over and over, maintaining control in different circumstances. She knew the mantra about "if things get out of hand get off the road". She had the presence of mind to keep from hurting anyone else. But a ditch that should not have been there changed all that. And doctors who should have been qualified for a higher level of care, but weren't, changed all that. And them not registering the mechanism of injury and doing just ONE MORE TEST, even a cheap duplex ultrasound, changed all that.

In an instant, on October 24, 2007, Sara's life, and the lives of everyone around her, changed forever. One year ago today.

Long Lost Update

First, I must apologize for my lack of recent updates. It is due only to lack of time and excess of fatigue. I've gotten to the point that when i'm not working or taking care of her I am trying to catch a nap here and there.

As you have seen on the blog, Sara is using her communication device more. She is more apt to request it thank make us try and figure out what she wants or is thinking from her eye movements. And, even those have improved and become clearer. Her face is so expressive these days. She can now move all parts of her face that should move. Her facial expressions are very close to pre-stroke. She is doing better on her pucker, but can't quite get the fish lips all pursed up. Fun to watch her trying.

Sara's therapies have been going well. PT has stopped, so that we can pick up and go forward. OT has a few more sessions. But SLP (speech therapy) is still going. She is able to push her tongue out both sides of her mouth, open and close her lips completely, move both upper and lower lips, mouth more words (recognizably). We've started putting in a fenistrated canula (one with a hole) so air can pass into her mouth. She is vibrating those vocal cords. The pathologist says it sounds like she's currently able to close her cords about half way. It is enough for sound, but very whispery. Any sound makes her laugh this awful sound, which makes her laugh more until she coughs...its all good for her.

Her breathing is doing very well. She is taking deeper breaths and has better control. Her secretions are still up there, but i'm thinking that's just normal for her - and having a foreign body stuck in your airway. Certainly making sure the "balloon" [the part of the traech that holds it in place in her airway] is not over inflated has helped her secretions and comfort. [the last one got over inflated and blew out the balloon on her...yuck]

Somebody has to remind this girl that she's a quadriplegic.... LOL. She's moving everything, just most of it not on purpose yet. I watch her sleep and she moves in her sleep, arms, legs, head, face. When she coughs or stretches the arms move, legs stretch. her shoulders move a LOT now. She is consistently getting her head up off the bed against gravity (and when she's in the wheelchair moving it off the headrest to upright), moving stronger left and right. Her cough is down-right forceful - lifting shoulders clear up off the bed - and in most cases, legs and arms, too. (like Coughing Crunches. girl is going to have abs of steel...)

Didn't have any help this weekend..(boo hoo), but she and I had a good day on Saturday. I put her on the floor in the living room, on top of a deflated air bed. Then I inflated it and we started laughing so hard when it folded her up like a taco. Then I got the bright idea to step on one side...which made her roll over to the opposite direction...and we laughed some more. Then I stepped on the opposite side, too and she rolled back. Everything was fine until the air mattress lifted me up off the floor and we ended up in a laughing heap in the middle of the air mattress, tangled limbs and lines. The dogs were going nuts thinking I was hurting her... We LOLd so hard. Then I curled up next to her and we just cuddled and watched TV. well, not JUST TV...Lifetime, Television for Women...hahaha That and some silly teenager show she likes called Degrassi...

She's spending about 3 to 5 hours up daily in the wheelchair. Her main complaint is her tailbone. We have a Roho cushion for her, but with no meat on your tail even the best cushion isn't enough. That girl told me this morning I had serious ba dunk a dunk (that's big butt for the rest of you white people) and then laughed. Then said she used to. I told her not to worry...she'll get her big butt back again someday. Just not on her Nestle Vanilla tube feeding fluid...

Its good for her to be upright. Better for circulation, joints, breathing, everything. After a while she gets real tired and wants to go back to bed. But as soon as I figure out how to attach oxygen and suction to her chair we will start going out for walks in the evening. That will help my fitness, and get her outside and seeing something other than the inside of the house.

She thanked me today for bringing her home. It was nice. She knows its hard - especially with the nursing situation and my job. But, it is still so very worth it - for her and for us all.

Every night I put her to bed. I carefully position her and put on her hand and foot braces. Do her treatment before bed. Grab a charged iPod and put in the earbuds, start up the R&B playlist from my iTunes. (so nice to fall asleep to...) Then I grab a warm wash cloth and wipe down her face and lips. Put carmex on her lips as she puckers. Then I pull out the laundry and trash, fill up her tube feed for the night, check the humidifier water level and once everything seems in order I am ready to say goodnight. I lean down and kiss her on the forehead. Then take a finger and draw a line from the kiss to the end of her nose, then poke her nose. Then kiss my finger and put it in front of her lips, within pucker distance, and she kisses my finger. Then she mouths "Mom" as I touch her cheek and we look into each others eyes. Its a special, quiet time for just her and I. Sometimes I tell her how very glad I am that she's here. Other times I say nothing at all. But when I stand at the door and with sign language ask her if she wants it closed, and she says "yes" with her blink, I close the door with a sense of peace that only having my baby girl at home can bring...

being home is much better

thank you

hello world

Breif Update

I felt I should update this just so that everybody isn't wondering if something has gone horribly wrong. Quite the opposite. Sara is doing well. She is getting up in her wheelchair for several hours a day, and spending increased amounts of time without any additional oxygen flow. She is Healthy, Stable, and happy.

Her Birthday was on the 11th. We didn't do much. I came over, crawled into bed with her for about 5 hours while we watched stuff on the TV. Pretty low key.

~Daniel H.

Time flies...

when you are having fun. Is that the saying? LOL

Well, we are having fun here. Its hard work taking care of her - well, more time consuming and never ending, but well worth it.

Sara is doing GREAT! Her lungs have been improving, she breathes easier. She has been getting more movement and is participating fully in her therapies.

On the movement front - she is now able to move her head side to side, nod up and down, pick her head up when she flops forward to the right side, still working on the left. When she picks her head up off the pillow she is also getting her shoulders off and moving, and that is moving her arms slightly. She also is able to extend her fingers from neutral. Involuntarily, she is yawning and stretching and shifts her own position in bed when sleeping. Those involuntary movements are normally absent in locked-in patients. Her range of motion exercises are going very well. She has improved quite a lot even in the three weeks she's been home.

On the voice front - her speech therapy is going well. We have been working with her taking deep breaths, then we plug her traech so air will move through her throat, and she is trying to say "ah". It comes out a little cracky, but she's definately moving across those vocal cords. Her neck strength will help that, and she gets so excited when she hears any of her voice come through. We do that a couple of times a day.

On the occupational therapy front - she has a wheelchair with a great cushion in it. She's been getting up (ok, we get her up in a hoyer lift and put her in the chair) and spending between 2 to 5 hours in the chair a day. We'll be working up to twice a day for the same periods. The goal being that she does not fatigue and is reasonably comfortable in the chair.
Also, due to her amount of head, neck and mouth movement available, the OT is going to add a mouth wand to her therapy. That is basically a Y that she bites in her mouth with a long pointer on the end so that she can touch the computer or hit a sensor or actuate a buzzer. Either way, she's getting function back, slowly but surely. She gets so excited when she is able to do something for the first time, and even more excited when she is able to repeat it. She works it and works it until she can't anymore. Just wait until we get that head and neck all stabilized...we'll start working down the body (like the nerves do).

She and I are going to watch Heroes. She's up in the chair now. Its good for her circulation and heart. Basically part of her daily workout. And, sitting next to her i'll flop her head off to the left and push her to pick it back up.

Since she's home and stable we're going to go ahead and open it up for friends to come by and start visiting her. Up to now its been family and Sara's closest circle of friends. But anyone who knows her and would like to visit can give me a call to schedule. We have a big white board calendar we put all that stuff up on so we won't overwhelm her. But, truly, she is doing well and would love to start seeing other people she cares about.


I've taken her outside to the yard at night and we've just looked up at the stars. She gets

Please play

Has it been a week already?

Time certainly does fly when you're having fun. And, despite the challenges and frustrations, it has been fun. I love to see her laugh. And, it turns out, all the laughter seems to be helping her.

I interviewed nurses over the weekend. There are two I am requesting scheduling with - Dawn and Robin. If I can get the two of them (maybe a third), I can resume full-time (at my desk) work and still have time to take care of other things and have help moving her for therapies and bathing before I'm on an overnight care shift for Sara.

She got her first sunshine in 11 months yesterday. I got her up and into the wheelchair and we rolled out onto the deck portion of the ramp. She loved it. Couldn't see, but loved it. She finally spelled out "sunglasses". So there she was, sitting on the front porch, breeze blowing, wearing her shades, enjoying being outside. She even laughed when she got her first "stare". I told her that unfortunately it would be the first of many. She said OK. So we sat out there for about 45 minutes, soaking up the day. Then went back inside and sat next to each other and held hands, watching TV. She tolerated the chair for 2 hours before I decided to put her back to bed. She wanted to stay up, but her face was starting to get pale and she looked tired.

I can't even get my head around everything that has happened this week. I have gone nonstop since her discharge. Once the nurses are here and working I should have more time to keep the world up on this amazing girl.

Oh...and she's ready to start receiving emails. I'll help her navigate her computer for responses.

Everything's fine...

She's doing ok. We're doing ok. Still waiting for nurses, so handling everything ourselves and with Team SARA.

Sara is just plain happy. She said she has slept so good since coming home. She's stable, no major issues, and settling into a routine for the day. Just like a teenager, she does not like to get up in the morning and gets all grumpy faced when I have to give her meds, treatment and move her and suction. Kind of a lot first thing. But, today she got to go back to sleep... Ah...that would be nice. LOL

Dusty curled up on the end of her bed and used her foot as a pillow. That is, until she got a muscle spasm and kicked him off the bed. Fly kitty! That'll keep him young...

Well, i'm going to go call the nursing service and yell - then go take a nap. Michael stayed home today to help take care of her so I could rest and work. Both of which I needed to do desperately. I need to do a lot more of both.

My babies are together watching movies in her room. So nice.

Breaking Point.

Third day home and the stress around the house is so prominent it's almost palpable. Mom has been taking care of Sara almost exclusively since Sara came home. We had some help yesterday and lots monday night, but none today.

Mom's behind on work and needs to get stuff done so tomorrow (Thursday) I will be home, taking care of Sara, so mom can get work done and keep her job.

Today really has been stressful, though. Sara's oxygen sats have been sitting low most of the day (dipping under the 85% mark, setting off the alarm... god I hate that alarm) and her mucus has been really thick and hard to suction out. she got into a real bad fit of coughing where her sats actually dropped down to about 70%... I got pretty scared there. But anywho, Sara's doing well now, her sats are good, and it's time to go to sleep.

...I forget what else I was going to write. Whatever. I'll update tomorrow. As for now, goodnight.

Homecoming Pix

Ambulance at the house! OMG...she's RIGHT there...

She burst into a silent laugh as soon as the wheels of the gurney hit the driveway...

Settled into her room, hours later, with her beloved next to her. This is about 4 hours after she got home. It took us that long to get everything all right and hooked up and cleaned up and changed over, etc. Six people flailing (ok, I was the only one flailing), overcoming equipment issues, supply finding, first medications, breathing treatment, etc...just to get her to this point...

Kitty Kitty on his girl. Kind of says it all right there...

Sara getting a breathing treatment while Kenai gets to give her a hug. The dogs have been great. They look in and want to go see her, but they wait for us (for the most part) to tell them its ok.

During the day they pop up in her window to say "Hi".

Happy brother. His world seems right with his sister home. Her world seems right being near her brother, too.

Even with sibling rivalry (and sometimes outright war) I guess a lot of parents might not see just how much their children love each other, until something like this happens.

I'm just grateful that Sara and Mike got past the rivalry stage and started hanging out and talking on long drives before all this happened. It helped make them both stronger to get through this.

The nurses haven't shown up in two days. I've been taking the brunt of the care as we get coverage worked out. It is exhausting at this point. But I remember this from actually having the baby...no sleep for new parents...feedings every two hours...diapers...responding to cries or sounds. The biggest difference is its feedings and medication every 2 hours and listening for the muffled cough in a traech tube...

well, that and the baby is about 200 pounds heavier... :P

HOME!

That's right. I'm in my bedroom on the second story typing this post and Sara is in her bedroom downstairs talking to people with the computer and the Apria Healthcare guy is fixing our oxygen machine thing.

But the important thing is she's home. We had to kick some asses getting her here (getting the doctors and discharge planner to clear everything), but she's here. The ambulance people showed up at about 6pm to the hospital, we left at 7pm, and we were in the house before 9pm. She's been stable and very, very happy for the past two hours. She's glad to be home around the people she loves, the sights and sounds she misses, and the animals. I let Kenai (our border collie) into her room and her face lit up like a christmas tree.

I'm so glad she's home. No more hospital bureaucracies, no more cross-contamination, no more bullshit. Just Sara, the nurses during the day, and her family and friends. It's going to be wonderful for her state of mind to be around the people and places she loves and remembers.

And to think, it was almost 11 months in hospitals (next week, the 24th, would have marked 11 months). Eleven months of bleak white walls, alarms going off in other rooms, a plethora of nurses and medical equipment, people telling her she can or can't do something. Now it's different... medical equipment is still around her as we need it to ensure her well being, but it's the reassurance that we will help her and push her to do anything she wants, the bright colorful walls and personality that resonates throughout the house, the ability to hear her family going about their lives in the other rooms, knowing that we're not more than a minute away from her.

If home isn't what's best for her, I don't know what is.

Still, though, she's home, and now we can begin a life anew for Sara. I'm excited and ready to see what the future will hold.

Twenty Questions.

God damnit.

It appears as if those in power are questioning our ability to care for Sara at home and are delaying her discharge. Mom is working feverishly to kick some asses into shape and get Sara home, and I am sitting in the corner of the room typing this blog post and readying myself for action. Mom can be scary when she's mad, but I'm the real heavy artillery. Hopefully I won't need to spring in to action, but I should always be ready.

Mom is really working hard with the discharge planner right now to get all the medications we need for tonight and tomorrow so we can get her out of the hospital. Mom's got her eyes on the prize and I don't think anything will get in her way.

Sara is coming home. Today. Or else. There's no two ways about it.

-Michael

Cleared for Takeoff

So... the doctor signed the discharge order, it's approved, we have most of (but not all of) the equipment we need, our house is almost completely ready, and everybody is ready for her to come home.

We're sitting in the hospital sending out text messages and making a blog post, talking to Sara and just killing time.

She seems really happy and excited, and she keeps saying silly stuff like "badger badger badger" and "the game" and I can only imagine how glad she is to be coming home.

We decorated (well, not me or the family, but her friends) her room last night, and I am sure she will love it. There's posters and stuffed animals and stuff everywhere, her room has so much character it's astonishing. I'm sure she will love it. It's such a huge contrast to the bleak white walls of a hospital or the hospital equipment all around her.

Pictures from Sara's final day as well as pictures of her at home and more information will be forthcoming.

-Michael

Passed our inspection - cleared for discharge

Today the Kaiser Santa Rosa home health people came by to inspect the house, check the equipment and assess whether we were ready for Sara to come home. I am happy to report that they have signed off on our preparation and are recommending her discharge for Monday.

Its a little surreal now. She's really that close to coming home. I'm not going to believe it until the ambulance backs up to the house and I see her face appear in the sunlight.

The bathroom is not done, but it is not going to hold her up. I told them that she will be bed bathed like she has been in the hospital until it is done. They liked the roll-in shower design and said she'll really enjoy it when its done. The contractor that was helping had to drop out to work on his normal work. Thanks for the help out that he was able to give. It made a big difference in prep. I'll be resuming on that tomorrow.

Sara's room is ready to decorate. So, any of her friends who would like to come over and start putting things up in her room, you are more than welcome to. We still have to put outlet covers and a switch in, her lights, and the shades, but that won't interfere with putting up her artwork and collections. We'll be home all weekend. Anybody is welcome all day saturday and late afternoon sunday.

On the Michael front - he's doing well. He and I have both been sick all week. I'm still feeling about half cruddy, but I have to be nearing the end of it. He seems fine now.

I'm still half believing she's actually going to be in this house on Monday. I know its going to be a different type of tough, but just having her here seems to make it feel a lot more possible to get through.

I can't thank enough the people who, directly and indirectly, helped us along the way. There is absolutely NO way we could have made it through this horrid first chapter, the first 10+ months since her accident, were it not for those close to us, to her, and the unending stream of loving thoughts that come our way daily. There are so many times I've caved in thinking I couldn't handle another second, and then i'll see a friend of Sara's in Target, or get a phone call from someone asking to help, or see that the blog has been read, and its not so bad. Seeing her always makes it worth it. What an amazing woman... Hard to believe she's my baby girl.

Getting Sara home is by no means the end of the road for us. It is the start of a new chapter for Sara. One where she is able to be a part of her own life, participate in the lives of her friends, continue her love affair with Daniel, witness her brother's final year of high school and his launch from the nest, and her continue to heal and grow. Its a chapter where we will see her start to move, push herself, work to breath in life - deep and full, and where we will start to hear her voice. She is communicating more each day via computer and it will only expand once she's home and I can work with her on it and programming along side her. She will also be working to get clear of the traech and start to work her own vocal cords. Once she truly gets her own voice back...watch out. But even before then, there are going to be things she and I are going to share that we have to do together, so that people understand what was really going on. Some things got held from the blog, other things only recently discovered, and still others that we were slow to explore out of fear and pain.

But, that aside for the moment...the plan is to discharge from Walnut Creek on Monday. Michael is going to come with me to help make sure we get everything and hopefully he can ride in the ambulance with her. That's going to be a long trip. Her Dad, Mike, will be here at the house to make sure that the nurse has everything they need to setup to receive her and get started, and run to Kaiser Santa Rosa if we are missing anything critical. Daniel is at school on Monday so he has to do that. He is the very first person she wants to see at home, in her own space. I suspect that Nanci and Kelly will want to come by and see her and the setup we've all worked so hard on - and Sara finally in it. Team Sara - please remind me to give you each keys to the house. You will always have access to her for emergencies and if you just want to fly by in the middle of the day to say hi and check on Sara and the nurse...or as we rotate some of her care times.

As for visitors - give us a couple of days to get her settled in the house and we'll start opening it up. Don't want to overwhelm the girl.

I can't wait to see that sweet face around the house...right where it belongs.

another day with Sara...

Yesterday... I had the chance to hangout with Sara... and this time we were working on a puzzle... lots of smiling laughing and just if you get to see it you too will be laughing like her... I just can't believe that she is one day closer to coming home...

Updated schedule

Well, back and forth continues...

We have nurses so I called Kaiser and they said she can move anytime. Asked me if Kaiser Santa Rosa home health had contacted me yet. Well, no, I replied. They were supposed to have come out already. Apparently they didn't get the word about that. Sara can't come home until they come "inspect" my house. Now that is scheduled for Friday morning.

That means the soonest she can come home is Monday. So we are pushing for Monday.

It happens to work out ok as of today, anyway. Michael kind of had the sniffles on Sunday when he got home. By last night he was really sick. Well, I got the flu from him, so we've both been home achy, coughing, stuffed up, sleepy, and other expressions of yuckiness. What a way to spend the day. I could hear him. He could hear me. Neither of us could muster the strength to go take care of the other. This afternoon we propped each other up and went and got flu meds, juice, soup, crackers. We're going to curl up under a blanket with some soup cups and watch some TV together in a little while.

Don offered to change up his schedule and come take care of me and the boy. I told him no, just come tomorrow like planned and me and the boy would tough it out. We'll both go to school and work tomorrow. Michael can't miss much school, and I can't miss much work. Both get a little sideways.

Sara is in great spirits. I saw her last night. I am really, REALLY hoping that I didn't get her sick. I was very careful with contact, but didn't wear a mask. (big dummy..) I'll know probably tomorrow, as it seemed to take about two days to set in.

In any case, while I feel halfway ok right now i'm going to get a little cleaning done. I put an e-collar on Gracie so she'd stop shredding her fur all over the house and I have to vacuum up the puppy fur balls she's tracked around.

OK...so it didn't happen today...

but we knew it wouldn't when the nursing service had the other nurse drop out. We still keep moving forward, because it is close, regardless.

SO...here's the latest:

WE HAVE NURSES!! They've signed the second nurse (and an additional one) and we now have staff available to cover the 6a-10p shifts.

That means she's one step closer to home. OMG...just the thought of it...home. my daughter at home.

All day long i've been up and down and back and forth. almost as bad as anticipation of labor. when is it going to happen? feels like now... nope, not now. false alarm. ooh...a twinge. now? ooh, another twinge...pace back and forth...fret fret fret... The funny thing...I was almost 30 days overdue with Sara... its taken longer to get her home this time...but not by much.

SO...I have to get a home health inspection by Santa Rosa Kaiser and then they back the ambulance up to the hospital, roll her out and drive her home.

OMG...now i'm having a panic attack. My house isn't clean (hey, we've been working! and the dogs been shedding), i have to get gloves, bed pads, sterile water...ack! I did order the pulse oximeter/heartrate monitor. It will be here Thursday, so that will have to be the soonest she's home.
My head is spinning. I think I need a nap. No time! Got stuff to do.

I'm about to have a baby girl!!

We just have way too much fun…

I'm at the hospital today hanging out with Sara... Michael, Sara's brother has decided to get a cold and pass it along to his mother... so she was not able to come out... since she was feeling under the weather... since I made some free time from studying... it's always a pleasure to see her...

Today I was presently surprised to see that she was out of the bed and in the famous cardiac chair... and when I walked in the room... she gave me one of the biggest smiles... since she knows that we're going to be laughing, smiling and just being silly... and today was no different...

here is another photo of Sara in the chair...

It was nice to see that she has been spending time in the chair... so it helped us to work on some new physical movements like sticking out her tongue...


also, I had her laughing for almost an hour telling bad jokes and stories about her cat ( Dusty) walking all over me when I'm sleeping...

One of the things that is so amazing about Sara is that she has her sense of humor... and she knows how to get me to have one of my belly laughs... working her eyes into being crossed and I always tell her if she keeps doing that they will get stuck...


From all the laughter that we were having she blew the cover off of her tube... I decided that I couldn't take it anymore... I had to cover her eyes so I could stop laughing... this is all I had to deflect her powers...




As you can see... we still have way too much fun...

Amazing progress

I am talking about on the home front. Saturday friends showed up to keep working on the house, and we even saw some new faces pitching in.

Kelly has a contractor friend, Nate, who has come in and relieved me of the bathroom...at least the "heavy lifting" parts. What a godsend. He got far in prepping the floor, and I will finish that prep this week. I'll also install the plumbing fixtures and overhead vent. He'll come back next saturday and a mortar floor will be put down.

Kelly and her children made a huge pile of green clippings (from the trees) into several loads of smaller clippings. The back yard is starting to look actually pretty good. The view from Sara's room is much less opressive (with the two mulberry trees blocking the sun and everything between...

Mark put up the shelves in Sara's room. She's really going to enjoy having her stuff visible. Her room is such a bright, happy place. Good place to heal and be safe.

Sabrina, Daniel C., Susan and Scott finished the ramp. The siding is on, its painted and the non-skid applied. It looks like it belongs to the house, which is perfect.

We've been whittling down the notes on the "to do" wall and the "done" wall is really full. I've started going around making notes about stuff that I missed the first time. There's not that much.

I remain grateful to the kindness of friends and strangers, alike. I am constantly amazed at how many people love Sara. I know i'm not the only one, just the first one. But it makes a mother feel so good to see that her daughter is loved by so many people...

sitting up is scary but I am usually okay once i am up

Getting buffetted around pretty good...

Sara is doing great. She's stable and all smiles. I went there yesterday and all she wanted me to do was talk. I talked straight for almost 3 hours until I couldn't anymore. I told her about the weekend, the people, the activities, the plans, work, her brother, everything. She says it all sounds "interesting" and wants to see it. She said Dusty's paw prints in the cement will be "funny".

So she knows we are shooting for rolling her out of there on the 10th...but we just had a setback. The second nurse for her team has decided not to do it and go another direction. So we only have the one nurse. She wants to meet Sara before she starts - so i'm going to have to pay her and drive her to Walnut Creek to meet Sara before she'll officially take the case. The nursing recruiter says he has someone else that he thinks would be an excellent nurse for Sara, but she is relocating to her and he doesn't know when she can start. I asked him if we were going to have nursing available for a bring-home on the 10th and he said likely no.

I feel like i've kind of been kicked in the stomach. First i'm not getting the bathroom done fast enough that we may have to bring in a contractor (even though its something I really want to do myself..for her) and now we are only 50% staffed on nursing for next week. So it looks unlikely that she'll be home on Tuesday...now it just floats until the nurse is staffed. I'll still finish the bathroom ok... obviously with help.

So i'm still going to move like its Tuesday, but my shoulders aren't up as far as they were...

The love and support of friends

I have to say that today goes down as one of the truly memorable positives in my book. I should actually say the combined today and Saturday.

Saturday only saw a few people come out to help. It was short notice for that day and many people already had plans. And, truly, I wasn't totally ready.

Scott and Susan have been tireless in getting the ramp ready to bring Sara home. They got the ramp reinforced and the concrete busted out and the beginning of the ramp poured and set. We even had Sara's cat, Dusty, do the honors and put some pawprints in the goo. Had him walk over it a few times just for good measure. The pawprints are so cute and I know will be very special to Sara. (Scott and Susan came Saturday and Sunday, in addition to a couple of other weekends they, and Sabrina, have been here getting the framing in and ramp all perfect.)

Nanci came and helped me get myself organized and really thinking about what actually needed to be done. She calmly unknotted Sara's favorite beaded curtain while we talked and I made notes.

Daniel brought muscle to the party and got started with the hauling process. I wasn't going to call and ask him to help, because he has been doing so much, but we needed the muscle.

Sunday we rested. If I don't go down one day a week I am useless for everything. I still don't think I napped enough...

Today was just incredible. Kelly and her youngest daughter Natalie showed up. Kelly is an absolute angel and tireless powerhouse. She is go-go-go and that's what she did all day. I don't know everything she did, but the notes on the wall whittled down and were re-organized several times, based on importance for today and the next week. Her father and mother came, as did Michael Jordan (ours and Kelly's former landlord and family friend), Jerry (handiest man and his sidekick son), Kim (landscaper doll who really perked up the front for Sara's homecoming...and her australian shepherd to hang out with our dogs). Dave Hattem, Daniel's father, came and jumped in anywhere he was needed. He skinned the ramp and did all the cutting jobs for me today, so I could concentrate on finding things for people and getting the drain and layout done for the bathroom (and the subfloor all closed up.) Dave also grilled me (in jest, of course) to see if I REALLY knew how to float a mortar base for an entire bathroom and what the next step would be...(40mil barrier, up from floor, 4mil plastic down walls to inside 40mil barrier, in case you'd like to know... :)

Kelly's mom, Edie, went right to the sewing projects. Before the end of the day she had beautiful material, had created a pattern for the house/hospital gowns, had removed the elastic from what is going to become draw sheets (half sheets we put under Sara's butt, under waterproof pads in case she soils, that helps us reposition her in the bed or wherever she is.) She took a pile of material and notes home to sew throughout the week.

Don's mother, Deborah, is also doing some hospital gowns at her house in Sacramento. (silly stuff, like Sponge Bob...)

Michael Jordan and Kelly's Dad (forgive me not remembering your name) made short work of the trees in the backyard. Michael joined them in taking down this silly barrier fence that served no purpose in the middle of the yard. The backyard looks so large and inviting now. And, we have a nice large shaded area under the trees to take Sara if the house is just way too hot. Kelly's dad also hung her favorite wind things in the tree just outside her window. It will delight her to see.

Jerry took care of fixing what I munched up in Sara's room with the paint. I have never done a sucky cut-in job before. Well, I did this time and never had the time to get back and fix it. He covered my tracks and the room looks awesome. We can finally put the shelves up so her friends can decorate.

Don came up with a great idea as we were getting ready to get the shelf material. Use wire shelves instead of solid shelves, and put plexiglass on top so she can see through it to her stuff. She loves being able to see her collections. Everything Sara has in her room has a special meaning to her...and the accumulation of her stuff tells her story. I didn't used to understand that (although she told me countless times)...until after her accident and I sat in her room. Then it was crystal clear to me...

A few of Kelly's and her mothers friends popped in and jumped in wherever they could. Post-it notes with all manner of jobs came down off the to-do wall and found their way to the Done wall.

JJ, a dear friend of mine and Don's, came and brought food and snacks, drinks and went back and forth shopping for us. This sweet woman is recovering from surgery herself, but wanted to be here for us, for Sara. JJ, you are a love and I feel bad that I haven't been able to be there to take care of you. Your heart is as big as your beautiful voice.

I am sure I am missing people and for that I beg forgiveness. I am truly overwhelmed by the generosity of people. Giving their time to come help us get ready to bring her home is very special to me. Time is so very precious. I sit here on the verge of tears of gratitude - the only kind of tears I have left.

Our family is truly blessed with the love and support of friends, near and far.

Thank You, Thank You, Thank You.