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.