Good afternoon,

Well so far the new oxy approach is working.  And I'm getting used to fielding the oh-you-poor-baby-questions.    I am dealing with the reality of it being Rainees all-day-life not just her night time life.  I have another puter graphic to show that I did.  It sums up my feelings for Rainee.    I may turn into an artist after all.  *weg*

Okay, gonna go surf boards and play catch-up, and make-work for others.  *grin*

Oh and thanks for the comments on the moon.  I'm glad others liked it too. 

Good morning.

Well so last night I just held Rainee.  I held her hands so she couldn't pull the oxy out, and her feet so she couldn't kick me. 

And it went over about as well as can be expected.  Of course it doesn't help that I made this decision at 1 or 2 am or so.  NOt even sure what time it was.  And she screamed, and screamed and screamed.  And finally I just nursed her for the rest of the night.

Of course this means I didn't sleep.  But hey the oxy stayed in. 

Sooooooooooooooo that plan didn't work.

Plan 556 coming up. 

Soooooooooooo now what?  Well I think we're gonna try just having her wear the wretched thing 24/7.  My friend the respitory therapist says if you can keep them wearing it the first 3 hours it will just become part of them.   I hate to do this 'cause of the oh-you-poor-baby-looks.  BUT I also need sleep, she needs sleep, my kids need us sleeping, nevermind my hubby.  Soooooooooo I'll let you know how plan 556 flops shortly.  *snigger*

I have something to share.  I did this completely on my own.  Its computer art.  But I kinda like it.  I'm oh-so-not an artist.  But my hubby said it was good.  So be merciful k?  Its sort-a what the sky looked like last night. 

Opnions welcome, as long as they don't start with it sucks.

Okay time to get this day going.  hehehehehe I can do this. Yes I can.  If I can't do it....well  hmmm don't know what then.

morning.

I'd like to say that I woke up with a whole new perspective.

But I'd be lying.

Good news is however at least DH is talking to me now.    We loaded kids up at 6:45 this morning and went for doughnuts at Safeway.   It seemed like a good idea at the time.  ROFL

I came home and took a almost 3 hour nap.  This helped some.   I also just point blank told hubbie that until further notice,  I can school the kiddos,  take care of the kiddos, do Rainee's night duty,  and cook meals.  The rest will get done some time, but I'm not gonna feel guilty if it doesn't.    We may be fishing for our laundry out of the great pile of clean unfolded clothes for a LONG while.  Or I may find the energy to tackle it...

HA

HA

HA

HA

HA

HA

At the moment my extreme saint of a hubby is mopping floors.  I personally wouldn't have considered it a priority.  But hey. whose complaining.  *snicker*

Tonight is my sister's birthday party...the one at college she came home for the weekend with friends.   It means nobody has to cook dinner.    Mom can do it.  hehehehehehehehhhhe

HMM....can't think of a single thing to say.

I read everybody's blogs...but my commenting ability when my cloud of pity party is hanging over my shoulder isn't great.  I'll try later.

And well its been a day.

I just spent two hours trying to redesign Rainee's oxy hat.  And didn't succeed.

And the second set of arm restraints I bought are too big.  So I juryrigged them.

And I'm fried.

They are a reminder a constant reminder of the frailty of my youngest daughters life.   They are a reminder of how close I came to loosing her before I ever got to hold her.  They are a reminder of how I could still looose her.  And I have to be reminded every night. 

And every night I lay her in bed and listen to her breathe.  And then sneak out to pretend I'm not worrying.

And every night I creep back into my bedroom to stare at the numbers of the pulse ox.  96, 94, 92, 90.  Down they spiral and I know I have to get up and wake her and reposition the wretched oxy.

And every night I have to find the brain inspite of sleep deprivation to come up with a new scheme to get the wretched oxy to stay in.   And I do this 2, 3, 4, 5x a night.

And every night my husband sleeps through it.

He gets up in the day time and does the housework.  HE takes care of the kids,  he distributes Rainee's daytime meds.  He works hard.

But the fear, the fear is mine.  And I can't seem to get him to say he's afraid.   And would it make me feel better if he did admit it?

Probably not.

And each morning I look at this vibrant seemingly incredibly healthy child who todders a long and stops long enough to nurse.   And I hear the comments of people, "But she looks so healthy."  And their evaluating..."Oh, but she's doing so well."  And over 90% of the time I let them live in their delusion.  Why should I fret them with my fear, my anxiety, over the daughter who suffers at night.

Of the hat that makes my daughter shake and scream when she sees it coming towards her face.  Of the sleepy hand that pushes my hand away in the middle of the night when I try to get the oxy near her nose once again.   Of the ugliness of the hat, and the bandaids and everything that I smother her poor little body with in order to keep her breathing one more night.

And then I think...maybe I can just pretend she's normal.  I'll abandon the hat, call the health care company and say TAKE this stuff away.  But I know, that will not work, and think of the guilt when more stuff went wrong with her body 'cause I couldn't win the battle of the oxy.

And well the circle goes on & on & on.  

A week ago I asked my husband to call about home health care.  He still hasn't.

Maybe he's in denial too.

Maybe we both want to be.  But then the alarm goes off and the pulse ox reads 85 and well up I get to fix it.   He rolls over and stares at me blankly.  I say "Go back to sleep, its just Rainee."   He rolls over and snores.  And I resent he did what I asked him to.

But one of us has to be able to keep the house and the kids in order.  And life, life just keeps going around and up and over.  And my heart revolves around that machine.  The one that says.  96, 95, 94, 92.  

I really, really, really need a life.   

Well actually I have a life.  *giggles*  It just is rather pukey this morning.  *snicker*

So I'm sitting here hitting refresh.  *snicker*  Playing online computer games, and being generally way too lazy.

Bible Study's in an hour so at least that will inspire me to get dressed.   It is almost noon after all.  (roll eyes)

Its raining tons and I'm soooooooooooooooo glad to see it!  Though if it rains from now to December remind me of that k?

Rainee actually *gasp* slept in until 6:15 this morning.  (trust me that's sleeping in) 

And then when Rob got home from work I went back to bed and slept 'til 9:30.  AF hits me hard.  It makes me throw up, cramp, etc.  So, I'm grabbing every minute of a break I can.

Sam is struggling at game time in Awana.  I'm not sure what to do about it.  Partly its his leader as she doesn't give clear directions and partly its his failure to pay attention.  And the biggest part is the fact that he absolutely HATES to loose.   Anyhow he melted down big time 'cause he forgot to run around a cone and the Game director yelled at him.   The tone of voice *twas* a bit harsh, but the complete meltdown a tinge extreme.  Its just really late for him I guess.  *shrugs*  I even made him nap. 

And then Kaylin bawls for a good 20 minutes AFTER we get home from Awana EVERY night.  And I'm doing this why?

Cause my kids keep saying they love it.  (roll eyes big time)

Rainee is currently finger painting her face in ketchup.  If I was a good mom I'd tell her no wouldn't I.  she liiiiiiiiikes ketchup.

Though probably not as much as this munchkin did back a long time ago. 

Anyone remember this picy?

Sorry I needed a giggle, and this one does it to me every time! 

Good morning,

     Well for a few minutes anyway.  I currently deserve a worlds-best-parenting prize.  Or the worlds-ummm-smartest-parent.  *giggles*  I have ALL five laying down for a "nap" at the same time.  Now what exactly are the odds of that?  Trust me not very good.  Rainee does oh so not LIKE napping.  *snicker*

But its Awana tonight and so their all taking a time-out.  Big two are sleeping, but their quiet, and wow does it sound nice. 

Rainee did very well in p/t today.  She is still dragging her foot/kinda walking with a limp.  But the therapist said to give it time and see if she can correct it on her own.  I WILL ask about it at the neural-development apointment Rainee has next Tuesday however.  I would actually like her hips/spine MRI'd just to make sure.  There are several things that could be causing it, and 'cause she's Rainee caution is always a very good thing. 

I really like this font! btw.  WOO HOO!  new fonts

I have an apointment at Childrens this coming Tuesday, the Tuesday after that...skip a week and then on Thursday.  *sigh*  And the second Tuesday apointment is going to generate another appointment as it is Rainee's evaluation for the tonsilectomy.   And the Thursday apt will quite probably generate another one as it is Samuels evaluation for his umbelical hernia surgery.  (roll eyes)  I love doctors. 

Good news is it means a lovely trip to Barnes and Nobles and it is a very fun store.    Oh and the Kids Club store is there too, and its becoming a rapid favorite of mine. 

I'm sliding into a routine without the housekeeper being here.  But I have to say here and now its ONLY due to my very very very good, nice, loving, awesome hubby.    He has picked up way too much slack for me, and I'm soooooooooooo greatful!

Tomorrow I will have to fold all the laundry he's kept moving, but at least he's kept it moving, and with the kids helping the 9 loads piled up shouldn't be too overwhelming.  

And today I think *giggles*  I'm going to teach Zeria how to clean toilets.  ROFL   I learned about that age...and its not too difficult of a job. 

Having a tich of difficulty with someone online who fortunately has NO idea I xanga.  ROFL.   I developed a charrie quite a while back just to interact with him, and some days he gets a little umm forgetful.  Well I finally wrote him a e-mail about it, and he didn't take it well.      It was a very nice e-mail too LOL  even had Dee proof-read it.  So, trying to ignore his hurt feelings and keep writing with him, but gonna pull Barb a little farther away from him I think. 

Oh well, always gonna be a few hurt feelings.  Its just life, the trick is to work around them and move on.    Oh and to try very very hard NOT to take things personally. 

Edit;  Took this 'cause I guess I've joined the sucker-for-a-test-club. 

Tonia, your subconscious mind is driven most by Imagination

You have a deep desire to use ideas to change the world around you. This drive influences you far more than you may realize on a conscious level.

You love to brainstorm and imagine new possibilities. The world is a fuller, richer place because you can contribute new ideas to any experience. Your natural curiosity inspires those around you and encourages them to come up with ideas they wouldn't have discovered without your help.

Your psyche is very rich; the more you learn about it, the more you will understand who you really are.

Deep sigh of relief.

She's 6 days late.  But Aunt Flo showed up.  And I'm sooooooooo glad to see her!

Just wasn't ready for her not to show up.  *snicker* 

Morning,

Had this lovely sleep.  Was quite amazed when I woke at 4:30 to realize Rainee hadn't woke us.

Now...I knew one of the reasons was the pulse ox wasn't on.  It wasn't on 'cause the probe is rather dying, and I can't get it to read...so Rob usually does it when he gets home from work, and he forgot.  But, was still amazed she'd slept so well.

Until Rob got her up and says..."I don't hear her oxygen."  I forgot to turn the wretched thing on.  She slept good 'cause the nasty old air wasn't irritating her.

*sigh*

Oh well live and learn, and re-check things twice!!!

Awwwwwwwwwwww aren't they cute?   These are the costumes I scored at Goodwill last week.  The girls think they are very, very cool. 

Okay well I'm gonna be online a lot I have a feeling, so I'll probably update later.  *snicker*

At least its sunny today this is a very very good thing. 

And its almost over.  I survived my first full day without the housekeeper.  WOO HOO.

Actually it was mostly a successful day too.   

With a couple minor exceptions *snicker*  One of them being right now.  *sigh*

Had all the monkeys ready for bed, and they decided to play dress up and undo diapers etc.  #@#*@(#&*$@(#&*@(#$&@(*  I just love doing jobs twice.

Okay got that out of my system.  *snicker*

Boards are entirely too quiet.  *sniff*  I might have to find something to do offline.  *snicker*

managed to figure out how to get Rainee to both p/t thingys without a housekeepr to babysit.  So that was a bit of finegelling I'm proud of.  LOL

And now just to figure out how to keep the house clean.  *sigh*

Update;

The day went well.  Mostly because everystep was prayerfully made.  And I don't say that to brag,  I say it 'cause its the only way I would have survived.

And instead of crying...we all ended up laughing hysterically hard in Sunday School.  Some days laughter is best. 

We were having great fun at the the expense of my house keeper who said "When I have kids,  I'll never do (fill in the blank)  We all shared goofy things that we said we'd never do and ate the words big time.  *snicker*

I told DH we would come home after SS.  But I was doing well and RAinee was sleeping (go figure)  So we stayed.

Came home instead of staying for potluck however, and I crashed for about 40 minutes will Rob served kiddos lunch.  And then we went to the bday party my kiddos had been invited to.

It worked, I didn't cry, or crash, and God is good!