Morning.

Good news is my kids slept in.  Until 7:40.  It was actually rather terrifying.  The bigger ones who share two bedrooms are typically awake at oh 6:00 am, not allowed out of their rooms until 7, but its rather hard to sleep through their shenanigans.  (Picture 4 Alcarins in a room).  *sniggers*

The bad news....Rainee had a bad, bad night.

I have to set up a reverse baby monitor.  I will do that today.  If I can find the cords for my other one I'll use it, if not I WILL be going and buying another one.  I have a monitor for the upstairs kids, but I need one for Rainee's room.  I had her oxy set up and her monitor, but was out functioning in the other part of the house.   Typically at night she's been doing ok.  Reasonably stable on the oxygen.

So as I headed to the bedroom for the night I heard the alarm going off.  I just shrugged and thought "Oh, Rainee's taken the probe off again."  (she doesn't like red lights on her toes.  )  I walked in my bedroom to realize that it wasn't no probe it was a bad read.  I stared at it consistently reading 88.   I've talked to EMT/Paramedics.  88 equals a quick run to the hospital for a patient.  Panic.      Now Rainee will dip to 88 and lower, but she doesn't usually stay there.

I stared at it.  I went and triple checked the oxygen was still turned on and plugged in.  (technical things are always goin funky).   They were.  I stared at the numbers again. 

I finally snuck into her room and rolled her over onto her back.  Because of her birth defects she doesn't breathe well on her stomache.  Actually she goes into ummm "accute respitory distress"  according to the pulminologist.

I stared at the numbers.  They went up to 90....still NOT good.

Then I called my husband.   He's at work, and really can't do anything, but their are just moments you need a spouse.   We talked about possibly waking Rainee.  And I was trying not to cry.   It sucks to know theirs something wrong with your child you know???  

And as I'm talking to him it occured to me I hadn't checked her cannula IN her nose.  She's been leaving it so alone that I forgot and I'd seen it taped to her face when I flipped her over.

I snuck into her room again leaving the phone ON on the bed DH waiting.   She had bumped one of the cannula prongs out of her nose.  I put it back in and the numbers went up.

I cheered.  And then cried.

Mommys shouldn't have to do this.  And I had some how deluded myself for a couple days that Rainee was gettin' better.

The numbers however didn't go up to where she should be.  They went into the "ok" range, but not the "totally safe range."

Zeria was in the hospital for four days because of the range that Rainee was at last night.  You know its the range that kills brain cells 'cause of lack of oxygen, but doesn't hurt the rest of your body...........

93-94.  on 1.5 liters of oxygen.  

Apparently she isn't getting better....

I knew that.

But I always hate to be slapped in the face with another reminder.

Life goes on.  And I take a deep breathe and try to move with it. 

So I survived the new dentist.  Actually he was incredibly gentle and a keeper. 

And as long as extreme pain doesn't happen with the tooth I get to avoid the root canal  (happy dance inserted here)

As the novacaine wore off I was in PAIN big red letter stuff.  Crying and so on.   I was afraid I was in serious doodoo.  But it disappeared as quickly as hit, so I'm praying that I've avoided it...

And now I have an apointment to get my teeth cleaned and 'evaluated' as they call it at this dentists office.  And know I will be facing two more fillings...and two more appointments sometime soon.  As one has a split in it.....and one has fallen out.  My teeth are really soft, and for whatever reason the fillings don't adhere as nicely as they should.

So greatful for this new office getting me in so quickly.  And they were PROUD they could help me.  And friendly.  And polite.   So pbbbbbbbbbbbbbbt to the old dentist. 

and its a day.

Went to the dentist this morning for an "emergency" apointment.  Had spent the weekend with a toothache.  Its a new dentist.  When I called my old one they informed me I was a inactive patient, and they didn't have space for me...My last apointment was just before Rainee.    They weren't polite about it.  Basically they told me I didn't return calls, so they didn't like me.

Well I DID return calls.  And told them I couldn't do a cleaning 'cause I had a daughter with extreme health challenges and just didn't have time.    I repeated this to the receptionist.  And she was to put it politely RUDE.  We will NEVER go back to them.    I can understand them needing to schedule the apointment in a month.   But "we don't want you 'cause you wouldn't get your teeth cleaned."  is all a bit too weird for me. 

So Rob inquired around work and found a new dentist.  They were polite and would have gotten me in the same day.    Rob knew we couldn't swing it yesterday, so I went this morning.  They said yup you got a cavity (knew that)  And scheduled a second appointment this afternoon to get it fixed.  *sigh*  A old filling broke and is stuck in my gums...he *thinks*  I'm gonna get away with a filling, but said be aware you *might* have to have a root canal.  Prays HARD that I don't.  Soooooooooo spendy, and painful.  *sigh*

So, in an hour the kids go to my moms and I go back to the dentist.    He'll fix the "big" one and a wee one next to it.    If he does a good job,  I'll schedule my cleaning and Robs.  And to get another filling that is cracked fixed.   The fact that they got me in this quickly was awesome.  And he was polite and friendly as well as the receptionist.  Here's hoping.

I HATE the dentists.  I have a small mouth, and they just have a hard time getting stuff in my mouth and I always come back with a migraine.    YUCKY YUCKY.   

So, thats my day don't you wanta change places with me??????

Some days you take a picture and when you get to see it you just say Wow.  This is one of my WOW pictures.  Kaylin played dress-up last night, and she was just so cute.   I handed her the roses and wa-la. 

In the past hour and a half....

Sam has;   washed the windows with a hose spraying down Rainee in the process after being told NOT to play with the water.

Scooped 3/4's of a cup of jam into a bowl and had a jam party with Rainee.

Slapped Zeria in the face.

Pushed Zeria off the bouncing horse.

Opened up a 10 pound tupperware container of whole wheat flour and covered he and his brother in it.

And taken a hatchet out to a rock and seen if he could split the rock with it.

Is it a personal record?????   

Good morning. 

Had fun last night surfing the web and finding cool picture tubes.....and then put them to use by redecorating xanga and improving Justin's siggy.  

Having issues with Jamari at the moment.  He's decided that he doesn't need to do what he's asked.  And rather then saying no, he just acts like he's deaf and walks away.  Its actually quite clever in a household of 5.  Because over half the time I forget to see if he's done it....I'm wise now...his days are numbered.    Or mine are.

Rainee has been hysterically happy the last couple days.  Rob and I were discussing whether this is more work then cranky.  We decided its at least the same amount of work 'cause she's still a demanding toddler.  But at least she's funny to laugh at right now. 

For those intrested my "visitor"  came yesterday.  I cheered ecstatically.    And had rather an inane conversation with my husband.  He grew up in a household of boys.  He was quite convinced that one should only pms for about two hours.   Of course he said this while I was pms'ing.  It didn't go over well.       But I gotta give the guy a break.  I had exactly 3 periods after we got married then was preggy with Kaylin.  3 periods after Kaylin and preggy with RAinee....its not like he's had a lot of experience with my grumps.........pats nice Rob man.  And covers TBK's eyes so he doesn't get embarassed.

I actually found the energy to do laundry yesterday in spite of my visitor.  I just haven't been doing house work,   Rob has.   It feels so good when I can.    And of course Rob is ecstatic too. 

Rainee has been sleeping in until 7:15.   I think this is why I have energy.  Oh yeah and Zeria has actually stayed in her own bed for four whole nights.  Its amazing what sleep does to your system.

Okies gonna surf the boards,  and then stare at Bob the Builder or something equally exciting. 

Not sure if I'm willing to post the before picture of my closet.  *sigh*  So, so, so bad.

But I cleaned it.  And when your sending 90% of it to Goodwill its amazing how fast cleaning goes.  *snigger*.   Two huge bags of stuff in the van.   Not too much garbage amazingly.   And I can open my drawers and my clothes are actually all on hangers again.....  

Oh and just so you know my closet is actually just a 1/8th of my room thats curtained off.  Its really nice to have that much space, so I can even hide my dresser.  But it can also be a deterrant for keeping it tidy. 

And ta'da!   I also as a bonus...*snigger*  Put my laundry away.....I hate putting my clothes away.  And tend to put it off as LONG as possible.   Mostly cause I've just been too busy and too tired for so long.    It feels good to actually be getting on top of a few things.    And don't worry Tracie.  When Rainee was that age...housework was just so NOT a priority.  Thats why I'm so excited about actually getting it done now. 

And there we have it.  One shelf is gone (the one that was hanging on the right)   And the other shelf (the one on the left is empty).  DH will be taking it for his stuffys as he has need for some extra storage.  Simplify!  Its wonderful. 

Evening

I did a major cleaning binge yesterday.  *grin*

And *gasp*   I can open my junk drawer in the kitchen again....

I only have two spaces left to tackle.  The corner of the laundry room,  and my closet in the bedroom.    I've figured out how to get the laundry room corner neat and stay that way......

I'm still working on the closet thing.  *grin*  I think some more of my stuffies that I've hung onto because of my mouse collection are going going gone.....

Shoulda really taken a before and after of the junk drawer.  But here's the after....

     I know I've flipped...but look theirs so little in it, and it opens and closes without me banging it 3x.  *giggles*

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Craktpot....I have moved on from the initial shock of Rainee's life.   But you know its as if I move on screaming silently.  When somebody says.  "Wow, she's looking better..."  I want to scream.  "WE just gave her a treatment 10 minutes ago.  She's on a liter of oxygen she's not better."   Instead I smile and crack a joke.  Or keep walking.  Or say quietly.  "She's not."  and keep walking.  

Only to a couple friends will I say more.  Because the rest their just talking....at least thats the way it seems. 

My thought for the day.  NEVER ask somebody how their doing, or how their children or doing unless you actually want to know.     And not when you know their on the fly.......you may have just ruined the rest of their day.

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The play we went to yesterday was lovely.  Well except for Rainee.    She was very happy.  (translated LOUD!)   And kept wanting boo-boo boo-boo.   Kaylin when she learned to talk asked for nursing by whispering she wanted moilky.   It was cute.   Rainee shouts boob.  Blush icon inserted here!

Oh and this blog is not open for comments about weaning her.  It just isn't.    It wouldn't be a pretty conversation.  *weg*

Rainee has been intensely happy for the last two days.   INTENSELY.  LOUD.   Its hysterical.  And so much fun.  

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Okies gonna go clean that bedroom.........

Wow.....

I've put up Living in Holland.  I've put up a couple other things from varying writers about living with a child with a disability.  Being a special needs mom.  But this one,   this is me.  This is the first one that expresses everything I've tried and couldn't.   It was sent to me via a chd board I belong to....

Most parents who have kids with disabilities usually seem to be fairly normal people. Others, who don't have children with disabilities, sometimes tell us what saints we must be to do all the things we do. Those of us who have been at this for several years know we're not saints. We know how long it took us to get to this place. This place where we appear to be capable and normal. Each of us deals with the disability issue in different ways. Some accept it as God's way. Others accept it as a challenge to grow. Some are angry. Some are sad. Most of us bounce back and forth between. We each cope in different ways too. Some advocate. Some scream. Some hide behind humor. Some silently accept. Some use their spouses as whipping boards. (As well as any other person who happens to be close.) It's a mixed up, jumbled up mess whenever you try to figure out what or how you are handling this. Most of us never actually figure it out. We just continue to plod along, hurdling each new obstacle as it arises. Never fully understanding exactly what it is that drives us. Perhaps it's better that we don't know. Sometimes I have moments of startling clarity. The other night while talking to a bunch of friends, someone said that it was okay to scream. Most did their best jungle scream, but I couldn't. The conversation had been about kids and Christmas. I shared with this group that Christmas was the worst for me because my youngest couldn't see all the lights. Somehow her blindness always seems worse during this season when the full impact of blindness and all it entails really tears at my heart. Suddenly I knew there is a silent, constant scream within me. I do my best to muffle its vibrations. I keep busy. I do what has to be done. I advocate. I write. I try to keep the scream buried. Sometimes I think I fear that if I do scream, I will never be able to stop. Some people may say that I still haven't totally accepted my child's disability. Maybe I haven't. Maybe I never will. Maybe the scream is my way of not accepting. Who knows? Many of you will understand what I am trying to convey here. I'm sure many adults with disabilities also have the silent scream within. It's caused by all the unfairness and frustration that always tags along with disabilities. It's the force, the adrenaline, the vibration that keeps us moving, whether it be in mind or in body. It can be channeled into constructive areas or it can lead straight to destruction. The person who feels it must make the choice--whether to scream aloud or to continue to scream silently.