A Better Day

Today was a better day.  Perhaps being busy is the key -- no time to worry or fret.

I managed to get my breakfast in without spraying it all over myself (I sprayed myself twice yesterday morning; I should have known it would be a rough day.)  Karissa skipped Sunday school to go to a birthday party for a dear friend at the gymnastics place.  I don't know what part she was more excited about; the party, the gymnastics, or getting to wear her pink leotard.  It was like a party for Kelly and I because we got two solid hours to ourselves (that we weren't being all sobby...).  Whoo hoo!

I've never been one for making a list and going out and buying all the presents at once.  Typically I put things away in my stash all year long.  Unfortunately, since I started feeling cruddy in August already, there wasn't as much in my stash as usual, and most of what was there got sucked up by the early Hanukkah hot on the heels of my discharge from the hospital.  So, uncharacteristically, Kelly and I spent our two free hours trying to finish as much of the shopping as we could.  We got most of it!  Searching for a couple of things, but the last box to ship is packed up on the table to go.  I got baskets for the teacher gifts on Friday, so we are good to go there as long as I get them all assembled this week.  EEEKKK!

After the birthday party, we came home and cleared the spot where the tree goes.  This is made more challenging every year by the increasing number of toys to be moved, but this year was even worse because of all the medical equipment.  I have three cases of formula I'm not really sure what to do with at this point.  I don't want to use it unless I absolutely have to (lengthy power outage is the only reason I can think of), but I'm not sure who I could donate the bulk of it to.  I'm sure there are several groups.  I can't put it in the garage because it will freeze and I just don't have that kind of cupboard space in the house.  No good place for the IV pole and feeding pump have presented themselves either.  It may just get wrapped in lights or garland or something.

Karina and Nathan put up the outdoor lights.  There was a lot of sorting through lights and comparing brightness, colors, etc.  I'm pretty sure I never put this much effort into lights.  Ironically the colored lights they chose are older than Karina and survived several winters outside in Reno.  Nice to see them in service again.

We are really starting to get the hang of the eating at home.  It isn't that we didn't cook at home before.  We often ate at home, but there was usually a restaurant or even two during a typical week.  Also, we weren't always that diligent about using up leftovers.  Now since I am sort of tied to the blender, we spend more time planning meals that work for me and use up what is in the fridge.  I cooked down our Cinderella pumpkin that we grew.  What an amazing deep orange color it is.  It will become some sort of squash soup for me since no one else here is likely to eat that.  Half a batch for me, half for the freezer.  When you cook this much at home, though, you go through a lot more groceries.  I know, duh.

I would be really excited if I could figure out the reflux issue.  There doesn't seem to be a rhyme or reason to when it is worse/better.  I know it was horrid last night because crying not only makes my face hurt, it backs everything up.  I have tried adding papaya enzyme, Beano, more free water, less free water, and I am taking Pepcid once a day.  Tonight the reflux is terrible and I am still sitting up.  I can't imagine what will happen at bed time.  Lots of reflux means lots of suctioning, which affects everyone's sleep.  I don't even want to think about what it is doing to my esophagus. The prescription Pepcid seemed to work better, but no luck getting it refilled.  I may have to have Kelly call my doctor here.  What a pain not being able to make my own appointments, etc.

I do have the information to set up the email phone system but I haven't gotten it done yet.  I'm not sure why I haven't.  Maybe all the holiday stuff?  Maybe hoping on some level I won't need it eventually (denial is so fun).  Who knows.  I have gotten email addresses for some of my regular places so I can schedule that way instead.

Speaking of addresses, there are still holiday cards to do, as well.  We never managed to get them out last year.  With Facebook they seem almost quaint, but we do still have many contacts who are not on Facebook.  Also, it is nice to see the pictures of the kids that often come with cards.  I will have to shovel off the mountainous pile of get well cards I have received (and continue to receive- THANK YOU!) to make space to display cards.

When we are being objective, none of my issues seem to be that huge.  I am able to take in enough nutrition.  I am able to communicate well enough to get through most situations.  A huge debt of gratitude to the checker at the Fred Meyer today who kindly handed me paper towel when the drool attack hit, and neither stared nor looked away in disgust.  She will probably never know what that tiny action meant to me.  There is still hope that communication will improve and swallowing may come.  We have to keep focusing on those positives and try to keep the depression inferi from pulling us under.  Keeping everyone fed, watered, and adequately rested will go a long way towards that goal.  Back to basics for us, apparently.

Until tomorrow...