And Here We Are

I had half of a great post written out in my head before bed last night. Too bad that is the only place it was written down...

Last night was the holiday concert at the elementary school.  I have to say it was amazing.  Was it the greatest concert ever?  No.  But when you only have music for 9 weeks a year (and before that 0 weeks a year), it is not a breath of fresh air, but a blast of it.  You could pick out the kids who live to sing/perform as well as those being tortured and mouthing the words.  Some of the kids were so into every bit of it, every movement, every enunciation.  It breaks my heart for them that they won't have music again until next school year.  Under better circumstances, I could do music at the school as I have on other occasions.  That is yet another hard part of losing full use of my voice.

After the concert, I had hugs from several people. Some of them were people I don't know. Someone passed my blog along to them and they have been reading it.  One woman said I was her hero and that she prays for me.  I will take all the prayers I can get.  I'm flattered by the hero label, but I'm not really a hero.  I don't have tights or fly and my super powers are not exactly x-ray vision or deflecting bullets.  The ability to make everything fit in the trunk will not stop a bank robbery in progress...

Today was a long/short day.  It seemed like there wasn't much to do, yet time flew.  Karina and I did some shopping in her eternal quest for jeans that fit.  Who knew a 6 long was so hard to find?  6 short and regular are everywhere.  We also went to try on Bogs.  I thought this would be a great solution to her eternally cold feet.  Too bad they only come in two ugly colors in an 11-- solid black and a hideous solid green.  No cute patterns or colors.  Another good idea bites the dust.  We only went to a couple of shops at Oakway, yet time just went.

Kelly was home this morning for Hap to come and figure out why we are having hot water and water pressure issues.  Not enough of the former and too much of the latter.  He fixed the hot water heater today (YAY!) and will be back next week to put in a pressure regulator.  We might be able to use warm water in the washing machine without blowing a hose.  Another YAY!

Karissa was at school enjoying pajama day and a movie and being wound up about the holiday.  Better at school than at home.

I dropped Karina off at home on my way to meet my new Physical Therapist.  She was good and took a lot of time checking things out.  I am hardly the run of the mill case. Hopefully with her help I will be able to gain back my strength and mobility despite being cut up, again.

Lesley is fixing my purse so it is no longer a black hole.  She is adding a key hook, and pockets for my cell phone, etc.  If she could make my purse so I always knew where it was, that would be even better.

Beth stopped by on her way to pick up her daughter at the air port. She brought more food for the freezer, all blender friendly.  She got green salsa in return, but I know we got the better end of this deal by far.  We had some time to visit.  Unfortunately my voice gets more tired by the evening, so it is harder for me to speak clearly.

My Dynavox arrived today!  Kelly is still working on configuring it because it seems the default settings are for someone with very different capabilities than mine.  Some of the stock phrases are very interesting.  "The bathroom is crowded."  "Church was boring."  I can't really imagine saying either of those phrases so often they would need to be instantly available.  None of the voices are great, but there are a couple that are fine. It will be nice, once I get the hang of it, especially in situations where clarity is more important than speed.

The nutrition company that provides my feeding supplies called this morning at 8 am.  She left a message before Kelly could get to the phone.  He called back immediately and twice more and only gets sent to voice mail.  No, she did not return his calls.  Last month a different woman called and took down our order and told us all the great stuff she was sending.  Too bad she didn't send any of it.  We finally had to call the emergency contact number and they sent five syringes through Fed Ex.  When they were sending cases of formula, they were Johnny on the Spot.  Now that all I need are better syringes and some gauze, not so much.

Speaking of eating, I've been pondering.  Swallowing has been a challenge, especially now because when I put my head back stuff comes up instead of going down.  However, I am optimistic that at some point I will be able to swallow.  I realized today that I have been comparing this to when I had radiation, but it won't be exactly like radiation.  I had absolutely no taste anywhere in my mouth during radiation.  I could feel the food in my mouth, it just tasted like nothing.  Now I have taste in the back part of my throat, but my flongue doesn't feel anything at all, so textures won't matter.  Also during radiation I had second degree burns in my mouth and throat, so swallowing felt like drinking shards of glass.  At least it won't feel like that this time.

My teeth feel weird and I am wondering if it is because I haven't been chewing.  They feel loose and wobbly almost.  They felt like that after surgery, but I chalked that up to all the digging around in there they did.  It got better, but now they feel like that again.  It is worse at the end of the day than in the morning.  Yet another special symptom.

On a happy note, I have had three nights of sleeping through the night with no reflux and no suctioning.  It really helps improve your demeanor when you get good sleep!  It helps everyone in the house when I don't have to turn the boat motor on in the middle of the night.  Now if I could figure out why the reflux is so awful during the day, I'd be set up.

Happy Winter Break to all the parents!

Until tomorrow...