Wednesday, December 30, 2015

Prolly the suckiest Christmas break for my kids.

It really started in late October.  Zbug got sick at a pep-rally.  She got her picture in the paper (ok- it was tiny and in the corner...but you can see her...in color...I saved it...)



It turned into atypical pneumonia.  She gave it to me.  We got better...sorta.  then she got another bug right before Christmas, gave it to her grandmother, cousin and aunt.  then she started to get better and somehow gave it to her brother.  Then she got sickly again and gave it to me and Joe.

Joe has a sore throat and is losing his voice.

I have a sore throat, and I think I perforated my right eardrum.  Depending who is at work tomorrow, I'm going to have one of my friends look at it.  Lol, nurses, the ultimate health DIY-ers.

As a result, since we got home from Joe's parents...we have done nothing.  Joe and I take turns being in bed half-asleep.  the kids are going stir crazy.

I had visions of playing with Bub's croquet set in the backyard every day, reading books with the kids and going to the science museum.

Instead, I managed to clean the kitchen and vacuum yesterday.  that was our excitement of the day, being chased by the vacuum cleaner.

Today, Zbug put a bunch of purple lego squares in a shopkins basket and told me it was her baby bee sleeping.

...  no words...

Monday, December 28, 2015

make me some soup?

So, I just finished my 4 day stretch.  It was a hard one.  Singing a Christmas carol as a goodbye.

Sometimes my hard little nurse heart breaks for them.

I'm sickly and having a hard time sleeping.  Since no one cooks for me and I wanted soup, it's cooking right now.  It's kinda a stone soup kinda thing with what I have around.  ham, barley, potato, celery, carrot, onion, dill, a can of beans.

no idea if it will be good.  I just want soup that is not from a can.  

and x2 benadryl.

nubs


Wednesday, December 23, 2015

Early Christmas

Got back from Joe's parents today.  I actually unpacked and did laundry.

Usually that takes about 2 weeks to do.  yeah, I typically suck at that, but am trying to improve.

I work 12hr shifts the next four days, that's why we had early Christmas on Sunday.  I try to like holidays, but I don't like most of them.  I do them for the sake of others around me...and because it is not socially acceptable to not do holiday stuff.  I am kinda glad my job makes me work most holidays.  Then I can not do things and people feel bad for me, instead of wondering why I'm *insert bad word of choice*

My kids love Christmas.  I do it.
This is one of the few pictures I found with me smiling in them.  PFFFT!

I actually got out some Christmas cards this year.  Joe thinks the last time I got them out...as in dropped off in a post box was 2009.  I think he is right.

So Bub gained A LOT of weight when we moved here 2.5 years ago and for the past year we have been modifying his special diet in an effort to maintain his current weight- NOT to necessarily loose weight.  but he did end up losing about 10lbs.  and he grew.  however, we were still slated to go to a weight management clinic for children in Little Rock last week.  *puff*

They didn't have anything new for me to do...well, they told me to lay off the eggs for Bub b/c his cholesterol is a high normal.  I think I have read research that now indicates cholesterol from eggs as a dietary source of cholesterol does not increase cholesterol levels.  I will find my friend Donny at work in the next few weeks.  He is a dietitian and very helpful, but he works days, and I am now- it seems- permanently fixed on nite shift.  When he leaves his daily crossword in the break room after his shift, I find it and finish for him....and leave it in his box with a smiley.  :) I also get great gardening advice from him.  I sometime end up staying late after my shift to finish charting, so one of these days our paths will cross again.
Digression- yeah, the MD, Pediatric Nurse, and Pediatric Dietitian had nothing of real substance for me.  Bub overall was well mannered, the Nurse didn't think I'd be able to get Bub to participate on some of the equipment they used for testing BMI etc.  Momma can get bub to taste foods that touch- Momma can get Bub to co-operate when I really need him to.  We're still going to go back in June, bc I do want to see if we are making progress.

They do want him to be more active, his muscle mass percentage is low.  Bub has this thing see....he cocoons himself under his blankets and watches one show on his TV and another show on his Ipad.
Since he is still very much entranced by Alice in Wonderland(non-Disney/non-Depp) I got him a croquet set for Christmas.  I will introduce it by watching the croquet scene, then going outside and having him help me set it up.

I am not sure if I will attempt to teach him the rules right away, part of me just wants him to want to play...the other part knows, however he first plays, will then be the only way he plays.  I better teach him the rules straight up.  Zbug is very rules oriented right now, (even if she doesn't want them applied to her)  She will most likely help me re-enforce how to play with the Bub.

And so it goes.


Thursday, December 17, 2015

creepy Darth Vader did not captivate after all

Sometimes I don't even realize it still hits me.  I find myself just going off about Bub's autism to people I hardly know?  WHO DOES THIS?  (other than me) 

I'm just sitting in Zbug's ballet class, and there is another mom there and a grandmother, and I don't even know how, but I'm talking about Bub and autism.  again.  discussing his diagnosis, discussing how it impacts Zbug, how it impacts our family, how we can't find a babysitter, on and on.  Thank God Patty called us in for the kiddo's party and I stopped.  WTH?  I don't do that anymore.

Maybe I'm just raw right now.


After several attempts, me n Zbug snuggled down to watch Star Wars today. She had seen a poster of Darth Vader at the grocery store and wanted to know who "that creepy guy" was.  We agreed to watch the movie together in case it was too scary for her (her idea).  We didn't even get to the part where they rescue Leia.  She kept bouncing around in the bed, asking questions that had nothing to do with the movie...basically driving me nuts.

Here's the thing with me and movies.  If I actually sit down and watch a movie...don't talk.  leave me alone to be mesmerized by the story.  Bug is very much like her grandmother, if the movie doesn't instantly captivate her, (like "Adventures in LaLa Loopsey Land")  she will bounce around and talk to you.  Even though I have watched star wars many many many times, it was still really annoying how she was bouncing all over me.  I had fallen asleep and her bouncing woke me up= crabby.
So we switched to watching classic Electric Company on youtube.  She fell asleep.  I fell asleep for an hour and woke up for no reason.  I do like that she likes watching classic Electric Company with me.   We sing the cheesy songs about word sounds and punctuation.  She likes the "I wish I didn't have to wash" song.  She now knows "SH" makes a shushing sound.  :)

Fell asleep for another hour about an hour ago, and again, woke up for no reason.

Bub is up, he got out of bed about a half hour ago bringing me the Ipad and saying "paaaad, deaaaaaad?"  I told him to go back to bed, he heard me get up and came out to investigate.  He is now downstairs playing lego break-y break-y.  (he says that while breaking his creations).  eventually I will have to make him go back to bed. But right now, I don't want that fight yet.




Monday, December 14, 2015

Birthday

Today is my sister's birthday.  I haven't talked to her since July when I let her know our cousin died.  It was an awkward conversation.  When I tried to call her again to let her know the details, I went straight to voice mail.  Every call since then has gone to voice mail.  None of my emails have been answered.  I have no idea how she is, or my brother-in-law, or my two nieces.

I spent the last two weeks trying to shop for something for her birthday, but everything I saw that I thought would be cute or useful, I kept thinking, "no, she'll find this aspect of it inappropriate"  or  "she doesn't allow images of *insert random animal/picture* in her home b/c *random ideation*".  So now I'm sitting here on her birthday not knowing what to do.

My uncle called me a few weeks ago asking what I thought would happen if he just showed up on her doorstep for Thanksgiving.  I felt like an eight-ball..."outcome does not look good"  But really, what else is there to conclude?

I watch my friends and their older sisters,  it doesn't seem like it has to be this terrible, but it is.  It mostly has been my whole life.  There have been brief periods when things between us were good, but one or the other of us said or did something stupid and it all crashed down again.  I like to think I didn't do the stupid things mostly, but I'm sure she thinks the same thing. 

This whole thing is really depressing me.  I didn't really get into Thanksgiving this year, and I'm not into Christmas at all.  I keep seeing commercials of families together, re-creating pictures from childhood.  I just start crying.  I found a family picture of all of us together from my wedding 15 years ago.  That is the last time we were all together.  I don't think we ever will be again.  I don't think I will ever have another family picture with the 5 of us.  I'm crying about it as I write. 

It's like she's already dead, but she's not.  But her absence is like she is.  It's like I'm already grieving for her even though she is still alive.  But it's like she isn't. 

I don't think I'm going to call after all.  My heart can only take so much breaking right now.


Wednesday, December 09, 2015

How to write a damn "S"

Today I took my Zbug to her ballet class.  She fell down on her elbow.  Not sure how.  Then we had some shopping to do, my mistake was to take her to Books A Million.  She isn't reading well yet, BUT she likes books....and she discovered they carry Shop-kins.  And DarthVader, she is not entirely sure who he is, but she likes how he looks scary.

Anyway, we had to buy some stuff for Christmas cookies.  Last year I made the mistake of making Christmas cookies for my unit party.  They will not let me make anything else now.  While shopping we talked about family and Christmas, and I let Bug know her cousin-K broke her ankle (?) yesterday.  Bug was heartbroken and I suggested she makes her cousin a card.  Z is very into making cards right now, Grandma-Minnesota's birthday was last week and we made a card, so while I am making cookies she breaks into my stamp and ink collection from pre-child existence:

????

I helped her spell the inside message:


So here is my issue of the day.  I have much less patience with Zbug's learning curve than I do with Bub's.  I don't know why.  It really makes me sad. I try really REALLY hard to not let Zbug feel she is put second to Bub because of his autism, and lately our management of Bub's behavior with medications and behavioral reinforcements has really been good.  It's been well over 6 months since his last major meltdown, he's using the bathroom as it is INTENDED to be used, and once we switched brands of toilet paper, he has not been flooding the toilet, he's been great, and trying to verbalize more since he got his communication assistance device (CAD).  But I watch Bug make a "S" backwards and my blood-pressure goes up.  I show her again, telling her it's like a "c" on top of a backwards "c".  she makes a "3"  and giggles. 
Then she asks me questions she knows what the answer is.  And she tells me "it's too hard to do all by myself" in reference to picking up ONE piece of trash. 
And then she tells me I'm "Blue-tiful"  and "i love you too much to not miss you when you are at work"  and she does her little ballerina walk.  and I breathe, and show her how to write a damn "s" one more time.




Wednesday, November 18, 2015

Ongoing as always

Today I got a call from my daughter's MD's office.  She lad a CBC and CMP done about 2 weeks ago when she came down with pneumonia (which of course she had to share with me).  Her T4 is 13.5

We have to do a Thyroid panel now. 

This would explain many things unless it is elevated from the bacterial infection, which it could be, but her white count was normal. 

 So, bully us.  I take her for labs tomorrow afternoon.  We talked about the lab draw today on the way to ballet class.  Zbug says "I am afraid of the dark and IVs"  I reminded her it's only a lab draw, not an IV.  She calls it a shot.  She can point out what veins are good- lol.  She likes to pretend she gives me shots.  I have to show her the correct place on the arm cuz she'd get me on my wrist- that would be painful.

We finally got word from PRC that Bub's augmentive communication device should be here in 2-3 weeks.

I started the process of getting this thing on Dec 10th of last year.  I bet a bent penny we will get it on Dec 10th (a Thursday).

Both kiddos have glasses now.


(Imagine pictures of my kids until either Chrome lets me access google sites or Explorer lets me upload images)

I am back to working Nights again.

Yeah, it keeps going that way.


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