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.
Friday, November 14, 2008
Saturday, November 8, 2008
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...
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...
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