And I dedicate this blog to alarms.  And who needs birth control.  Warning this is not for the timid, or the easily embarassed.

Okay, so it was supposed to be cuddle time with DH last night.  But, you all know how that goes.

We started out watching a Star Trek re-run, but decided it was too nice outside, so rigged the baby monitor so we could hear Rainee's alarms, and headed outside.

First interruption~~Stinky.  He decided sitting in his pen while we were in the yard was UNACCEPTABLE.  squeeak, whine, squeeak whine,  So I let the puppy out.  He runs around the yard, and groses us out doing some grose puppy things.  And we laugh at the mood being ruined.

We start to hold hands.  Its quiet, it feels nice to have quiet.  And guess what?  The septic system alarm which is RIGHT beside us starts ringing.  bwahahahaha.   Its broken, we can't get it to shut up.  After 5  minutes of messing with it it goes off.

We sit outside for a few more minutes, but its cold and the mood has left us completely.  snicker.

We go back inside.  We're waiting for Apria to deliver oxygen, and its almost 8pm.  Goodness their late.  All of a sudden we hear Rainee's alarm.  Its not something wrong with Rainee alarm, its a probe fell off.  *sigh* 

We both go into deal with it.  The Apnea monitor will NOT shut off.  You have to push two buttons down at the same time, let go of one and then the other.  The Blue button will NOT push down.  We fuss with this for over five minutes finally get it to shut up.  Of course this has woke Rainee, I nurse her and she's back asleep.

Rob decides to go to bed.  I'll wait up for Apria.  I did.  Its quiet.  Of course its quiet, we're not trying to do anything.  *snicker*

At 9pm I give up on Apria and head to bed.  Rob wakes up.  We start talking and snuggling.  Rainee must have heard us.  *snicker*  Her pulse ox goes off, she's desatted (mildly)  She of course wakes up, and I have to nurse her.  Rob groans, as well this is getting REALLY OLD!

I get her back to sleep.  *snicker*  And we are wondering if mommy & daddy time is highly overrated.  ROFL.   We cuddle a bit more.  Its almost 10 pm.  And guess what????????

Yep, the Apria truck came to deliver oxygen.

Life is just too insane some days.  And why in the heck did he come at 10 pm??  I'm still trying to figure that out, and desperately wishing there was another Health Care Company who would deliver to us in the hinter-lands.

Note to self.  TURN ALL ALARMS OFF next time.

I'm here.  Just really busy today.

My sisters baby has had a hard go of it.  Her blood sugars would not come up.  They finally released her this afternoon. 

I'm having a harder and harder time getting any time online.  Hopefully as time goes on and the new scheme of things (dealing with Rainee's oxygen)  will get a little bit easier and we'll fall into a routine.

Today Rob and I folded laundry together.    It was actually kinda fun.  I also wandered around putting things away, so the house looks considerably less cluttered.

And this afternoon I took a 3.5 hour nap compliments of a very loving dh. 

Tomorrow my sis will come to play with the kids, and maybe I can get a bit more laundry and some more sleep.   And in the afternoon my other sister is turning 11, and we are gonna go have a pool party for her.    I LOVE swimming its my favorite thing to do, and I haven't done it in months and months and months.  So, I'm looking forward to that.  Although I'm NOT looking forward to getting 5 kiddos into swim suits and water wings.  BWAHAHAHAHAHAHAHAHA

Okay gonna go stare at the tv and enjoy my dh, just didn't want anybody worrying that I disappeared again.

so i could whine, and complain about life, theres lots to complain about, but I got this in e-mail and it made me forget life for a bit, shoot I had tears streaming down my face I was laughing so hard

The following came from an anonymous Mother in Austin, Texas: 
Things I've learned from my Children (honest &no kidding):
 1. A king-size waterbed holds enough water to fill a 2000 sq. ft. house 4 
inches deep.
 2. If you spray hairspray on dust bunnies and run over them with roller 
blades, they can ignite.
 3. A 3-year old's voice is louder than 200 adults in a crowded restaurant.
 4. If you hook a dog leash over a ceiling fan, the motor is not strong 
enough to rotate a 42 pound boy wearing Batman underwear and a Superman 
cape. It is strong enough, however, if tied to a paint can, to spread paint 
on all four walls of a 20x20 ft. room.
 5. You should not throw baseballs up when the ceiling fan is on. When 
using a ceiling fan as a bat, you have to throw the ball up a few times
before you get a hit. A ceiling fan can hit a baseball a long way. 
6. The glass in windows (even double-pane) doesn't stop a baseball hit by a 
ceiling fan.
 7. When you hear the toilet flush and the words "uh oh," it's already too 
late.
  8. Brake fluid mixed with Clorox makes smoke, and lots of it.
 9. A six-year old can start a fire with a flint rock even though a 
36-year old man says they can only do it in the movies.
 10. Certain Legos will pass through the digestive tract of a 4-year-old.
 11. PlayDough and microwave should not be used in the same sentence.
 12. Super glue is forever.
 13. No matter how much Jell-O you put in a swimming pool you still can't 
walk on water.
 14. Pool filters do not like Jell-O. 
15. VCR's do not eject PB&J sandwiches even though TV commercials show they 
do. 
16. Garbage bags do not make good parachutes. 
17. Marbles in gas tanks make lots of noise when driving. 
18. You probably do not want to know what that odor is. 
19. Always look in the oven before you turn it on. Plastic toys do not like 
ovens. 
20. The fire department in Austin, TX has a 5-minute response time. 
21. The spin cycle on the washing machine does not make earthworms dizzy.
22. It will, however, make cats dizzy.
 23. Cats throw up twice their body weight when dizzy.
 

   Grandchildren are the reward you get for not killing your children.

Its a ZOOOOO!!!  Its my first day of kiddo care all by myself.  AAAAAAACK EEEEEEK  OOOOOH  Its been over a week since I've done this on my own will I remember how?

Snicker, and that being said, I'm taking my 4 big kiddos to a babysitter in about a half hour.  I have a Bible study luncheon, and then P/T for Rainee.  *sigh*  The good news is she's responding to it EXTREMELY well.   

She pulled herself to a stand from a small chair multiple times this morning something she REFUSED to do yesterday.  So the little chair thingy they sent home is marvelous.

Oh, I forgot yesterday Rainee got a P/T evaluation and a couple tips.  And she'll be going to a Infants group once a week for awhile put on by the school system.  Today is our first day.  I don't anticipate her needing it forever, but she was set at a 8 month level for development, so I decided to give her a couple little pushes.  The ladies were awesome, and not super concerned, so things should be kinda fun.

Except of course this means ditching the big kids once again.  I keep reminding myself they still see MUCH more of me then they would if I worked.  Mostly it assauges the guilt.

(mostly)

Good news~~we got the doctors okay to up the oxygen as needed up to 3 liters.  We upped to 1.5 liters last night and she didn't desat once, or have a apnea event.    She even slept.  I only got up with her twice. WOO HOO

BETTER NEWS:  My sister had her baby at 3 am this morning.  Katie Amanda.  She delivered over in Seattle due to wanting a VBAC and they don't do them here.  I hope to get to see her in the next couple days.  The baby didn't want to start breathing right after she was born.  (Does this sound familiar)  But is pink and fine now, and all the tests they've run on her say she's fine.   My sis being the get-out-of-the-hospital kinda person wants to go home today.  I was BEGGING her to stay one more day and MAKE sure that baby's ok. 

In hind-sight I sure wish I could have insisted they check Rainee's breathing when we were still at Childrens the first time rather then waiting so long.  So, was trying to share some of my hind-sight wisdom.  I doubt she listened.    We're sisters of course we don't listen to each other.

snicker.

She was so excited though, its the first birth where she got to hold the baby before anybody else.  With her son, he was COATED in meconium and in a bit of distress.  So they had to clean him up first.  With her daughter she had a c-section.  So, this is her first semi-normal delivery.  Other then the blue baby scare AFTER she was born.

My mom is praying so hard that we girls are done having babies, she HATES the worry it gives her.  BWAHAHA

DH has a Vasectomy scheduled, but we were gonna cancel it, and now we're thinking on keeping it, I don't know what to do.  It seems like a REALLY crappy time to make the decision.  I'm considering just going and getting a IUD put in as a temporary stop-gap.  I've researched them, and I believe that their probably not an abortifacient, and would be a heck of a lot better then what we're doing right now.  I know over-sharing. 

I'm typing with Princess on my lap.  And we're examining her mini-boo-boos.  LOL  Gotta love kids

Have a great day all.

Oh yeah, today's my first day of wiring Rainee for bed all by myself.  It could be intresting,  I almost managed last night, but couldn't get the pulse-ox set.  I sure hope I can do it. 

Morning...

Skipping the good part 'cause I'm NOT awake yet. 

Well Rainee's apnea monitor went off about 6 times last night.  The scariest one being 42 seconds.  I interrupted that one and massaged her gently until she started breathing.  I don't like this new life. 

She's also continuing to desat even though she's on a liter of oxygen.  Not as low, but still desats, and she wakes up when she desats.    Poor thing I would too, its scarey to not be breathing. 

I got all my errands done yesterday, and we found time to let the kiddos play at a park, and go for a drive.  Got home tired, took a nap while dh watched kids, and then our date night.  Our date night was low key, and quite relaxing.  We ended up going and visiting at my parents for awhile.  And for once in a million years there were no kids there.  So we had a nice uninterupted visit. 

DH is doing a extra shift today (I think)  we unfortunately desperately need the money.  Our hospital bills are accumulating.  We could theoretically pay them, but then I would have no help, and right now I have to have some relief or things could get ugly. 

Oh, did I mention we have a new family member?  We have had for almost 2 weeks.  His name is stinky, and he's a 8 week old border-collie look alike puppy.  He's actually lab, terrier, blue heeler, and something else.    (MUTT in other words)  He's quite gentle with our kids, and yep I'm nuts.

Things were semi-sane when we brought him home, but oh well.  Princess is a year older, and taking good care of him, so that is making it work. 

Currently I have FOUR kids with Big wheels driving around my house.  (YIKES)  We bought one for Kaylin for her birthday with money Grandma S just sent.  And last night we found a $3 one at Goodwill for Mari.  Their to be used outside, but well 'cause their new we let them have them inside for a bit.

Kaylin is currently MAD 'cause Mari got a new bike and its not his birthday.  Princess is mad 'cause her bike is old, and she wants to know why we couldn't get her a new one.  And mommy just threatened to take ALL the bikes away and put them in the closet.

We tried to satisfy them. 

But we are like that huh?  God gives us something new, and we say,  "You know God, I like this, but I'd rather have that."  UGH  Gotta learn some contentment.

Well, I'm waiting for phone calls today, so won't be online much. 

Have a great day.

Tonia

Good morning

I think I'm in love with daylight savings.  My kiddos are still sleeping and its 7 am.    Woo HOO

I surfed the boards, not much trouble I could 'cause. 

And today I have about 1000 errands/phone calls to make in regards to loose ends from Rainee's hospital stay.

I have to call,

Early Intervention,

Apria~~need more nasul canules

My doctor~~need my blood work done

Depossit checks

Get back up nebulizer fixed

Call ped and look for genetic records in regards to my brother who died.

Deliver letters of notice of a apnea monitor to PUD, Fire department, Phone company.

And get duoderm for Rainee's face.  (maybe)

And in the midst of that I have 5 kiddos to take care of.  snicker.  DH is home, so we'll parcel out the mundane between us, and see how it goes.  Tonight we have a date night, and can remember how it is to talk to each other as all we've done the last couple days is take turns getting caught up on sleep, etc.

Life moves on.

Oh, Oh, guess what.  RAinee only woke up 2.5 times last night.  Thats a record for the last 3 months.  Now impossible would be her just plain not waking up all night long.  snicker.  But I'll settle for this much sleep.  the .5 btw is she woke up at 5:30.  But I'm not gonna count that one 'cause that's practically morning right?

I've sunk to a new low if 2.5 half wake ups is a cool thing.  snicker

Okay, in regards to my mood.  I have a couple things to share.

A dear friend who long ago was my youth group leader, but now is just a friend stopped by gave me a hug, and dropped off 2 Papa Murphy's pizzas.    They btw were greatfully appreciated, we will have them for dinner tonight.  Last night we had frozen lasagna from the grocery store.  BTW its a purdy decent meal, and cheaper then eating out.  If people ask today how they can help~~I will tell them food is always appreciated.  Snicker. 

Oh also btw if you have friends dealing with life imo meals are always a bonus, if you don't need them right now, you can always freeze them and rescue them when you do NEED food. 

Okay back to my friend.  She only stayed a couple minutes~~perfect amount of time~~gave me a hug, and shared 2 mini-miracles in her life.  She was headed to work this morning, they are currently closing their business (a driving range)  and are doing a garage sell to get rid of extra stuff.  Anyhow as she pulled out of the driveway she saw a little two year old walking down the road.  (OOPS)  She knew who he was and drove him back to his home.  She was a angel in disguise.    Then later in the day somebody had given them a $50 to pay for stuff.  They went to find it and couldn't.  He had put it in his pocket and figured when he took his keys out it fell out and somebody stole it.  They were of course extremely bumbed.  Her dh wanted a phone number, and she said oh, I think thats in the garbage.   Let me go look.  She started rifling through the garbage for the phone number~~and found the $50.

God IS in control!

I read this in devotions.  Its the David & Goliath Battle. 

⁴⁵ David said to the Philistine, "You come against me with sword and spear and javelin, but I come against you in the name of the LORD Almighty, the God of the armies of Israel, whom you have defied. ⁴⁶ This day the LORD will hand you over to me, and I'll strike you down and cut off your head. Today I will give the carcasses of the Philistine army to the birds of the air and the beasts of the earth, and the whole world will know that there is a God in Israel. ⁴⁷ All those gathered here will know that it is not by sword or spear that the LORD saves; for the battle is the LORD's, and he will give all of you into our hands."

I am doing a bit better in the denial department.  I'm slowly moving towards the fighting part.  God IS in control.

I prayed this morning for a life verse for Rainee.  If your not a Christian I don't know how to explain this to you.  But God gave me MY life verse for her.   I wish I could give it to you my friends.

2 Timothy 1:12  ...."For I KNOW whom I have believed and am persuaded that he IS able to keep that which I've committed unto Him against that day." 

God IS in control.

Tracie, I'm still taking my paxil.  So, the doctors are kinda involved.  Mind you I forgot to bring it with me to Seattle, so was off it for 4 days.  *sigh*  But, I'm back on, and life will work.

I'm not into praising God quite yet, but I am working on it.  I'm almost to acceptance, so this is better then nothing.

Finding a sickening diagnosis for your child is just like a death of a dream. 

I've read this a couple times,  I thought I'd share it. 

WELCOME TO HOLLAND

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And that sums up things right now.

Evening.

I slept a lot today.  And snuggled with my kiddos, and tried to process my information overload.  Too many words from too many doctors.  They couldn't even keep the information straight after awhile.    Shoot the diagnosis they came up with for all of her seemingly unrelated issues didn't fit in the diagnosis box on their check-out paper.  The nurse had to write in cramped writing on the top, and the side, and finally got out a second page.  bwahahahahaha.

We will be doing a Reflux test soon.  I'm not sure when, hopefully we can get the scheduling for that soon.

It will be a 24 hour study which she will take after having been off her zantac for a week or so.  It will test to see how substantial her reflux is, and if that could be contributing to the lung disease/and or central apnea.   I don't know when it will be scheduled.

We have a follow up in regards to the 3 night stay on the 17th of April.  (During our so-called "vacation" time.)  We've decided not to go to Pocatello (my 'ils home) this year after all.  It is just too much right now.

We will however return to Seaside where we stayed for 2 nights as a mini-vacation.  We will stay like 3 nights there with the 'ils and a couple nights on our own.  I'm not sure exactly where the money for it is coming, but we're gonna do it anyhoo.  We need a mini-break from reality.

I'm over-stressed, and kinda in denial right now.  The phrases this can't be happening, is this real, and Why God are repeated a lot.

I'm holding on by a thread.  And I'm not being dramatic about it either.  I just want to know whats going on.  And it doesn't appear that there are any answers.

God is in Control....

the case of the missing person

I'm back.  And yep I disappeared again.

My one night stay in the hospital with Rainee turned into three.  She has central Apnea and stops breathing for upwards of 30 seconds MULTIPLE times a night.  Guess that explains the desaturations. 

She also has several other new diagnosis.  Her lung disease being changed to Obstructional Lung Disease.  (Like that official sounding term?)  It means she doesn't push all the carbon dioxide out of her lungs.

She also has mild hypertonia.  And mild gross motor skill delays, and UMM, lets see there were at least two more.  Thinking,  Oh yeah, ummm several congenital anomalies.  Hows that for nice and specific.  BWAHAHAHA

Because of her 4 main problems.  The PDA, the bronchial malacia, the trachea stenosis, and the central apnea.  OOPS that would be 5 main problems.  And the GERD  OOPS sorry 6, the Obstructional lung disease.  Okay did I miss any of the "main" ones.  I think I got them all.  Anyhoo because of all of these seemingly unrelated but quite serious problems they did some serious evaluation of her developoment, and genetics.  And are trying to come up with a syndrome or something that fits all of the seemingly unrelated problems. 

Blood work and more results to be in some time. 

She did a anesthesized MRI.  Showed nothing.  X-rays of lungs, and hips, and spine.  (because of her not standing on her own yet)  Showed nothing.

Basically they have no idea why she stops breathing.  We're sure to be capping out our insurance any second now.

She came home with oxygen and a apnea monitor to add to the pulse ox.  She will be on a liter of oxygen every night.  And this obnoxious alarm thing will go off if she stops breathing for longer then 25 seconds.  And there are still more tests coming.

I obviously am overwhelmed, and sleep deprived due to three nights in three different hospital rooms (same hospital)  And so on & so forth.

I'm sorry for leaving people hanging on the story boards.  My sister is coming over tomorrow so I can sleep.  And maybe after that I will catch up.  Can somebody who reads this explain to those at the HOE, Castle, etc where I went.  TIA.

I sure wish I had a lap-top  I could have used it waiting for test results. 

Maybe I'll get rich.  BWAHA

I have at least one more overnight hospital stay coming up in the near future for another 24 hour evaulation.

And well life is a pain in the but, and I'm near hysteria.

God is in control?  I'm trying hard to believe that.