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...