Good morning

Today its time to take Rainee back to P/T  and see if we can learn anything new.  I hope so, 'cause I don't see that we're getting too far too fast, but maybe I'm too negative.

Yesterday we finally got our van back.  And Rob did some errands with the 3 babies in my parents pick-up.  Leaving me to play with the two older ones.   It was kinda fun to only have to play with a couple.

We jumped on the trampoline together, and rolled all over it, and then laid together on it while I told a story, and HD fell asleep in my arms.    It was quite precious and a lovely moment in the day.

We upped Rainee's oxygen to 2 liters.  Annnnnnnnnd

She slept!!!!  WOO HOO.  She slept more then she has since about 5 days after she came home from the hospital and started de-satting again.    She slept from 7-10:30 without waking.  And then about 2.5 hours of sleep a nurse and 2.5 hours of sleep.  It was quite lovely.   

She desatted once to 86 which concerned us.  We turned a light on and realized that she had managed to get the oxygen out of her nose and it was blowing into her lip.  (Doesn't do a heck of a lot of good there. )  So I repositioned it and back to sleep she went.  And that was just after she'd woke up, so it wasn't a extra wake-up even. 

Okay then well I guess we're gonna go do something  "fun" in a few, so I'll get off and do our last 3 days of vacation.  Have a great day all. 

Good morning

Life is still on vacation mode around here.  With the exception of broken down vehicles. 

Sunday our van died on the way to church.  A man from church and my parents helped us get it to the repair shop.  We had a appointment for Monday anyhow, so it was too much of a pain.  And we borrowed my parents van for the day to get us back home as they have a extra vehicle.

Man "fixed" said vehicle Monday.  Monday was date night.  Gonna go get fixed vehicle and return borrowed vehicle to mom.  Pick up both, go to moms.  Drop off mom's vehicle.  Head to town.  Van dies 5x before hitting the repair shop.

Van goes back to repair shop, mom rescues us again, and well we're borrowing their truck this time. 

He sure did a good "fix" job didn't he.  bwahahahahaha

I was extremely grumpy/whiny about it last night, but life moves on.

Rainee bug desatted to 86 last night for several minutes.  And we re-upped her oxygen to 2 liters.  We keep upping it to that and then putting it back to 1.5.  I think we're just gonna keep it up at 2 liters.

Life is split is schitzophrenic.  In the daytime I have this beautiful happy child.  She's behind in her grose-motor skills, but her breathings been reasonably good, and she's so much fun to deal with.  I almost forget that in the night time she becomes some other kind of terrible scarry thing.    As night comes the tension mounts.  The alarms beep, the baby wakes fitfully many times, and life becomes extremely hellish.  And this seeming darkness takes over our lives.  And then we wake up and we have sunshiny baby again.  *sigh*  And I can almost forget once again about the night time terrors.      I wish I could truely forget....

On another front.   We have another new dog.  Its a long sad irritating frustrating story.  My parents watched our "stupid" dog.  Who was always running away.  We told them NOT NOT NOT to let him free 'cause he'd run.  They didn't listen.  He ran and got hit. 

The puppy I got a couple weeks ago got stolen and I didn't blog about it 'cause other things were also going on.  So dogs in our house seemed to be doing fairly pooorly and its extremely embarassing that we can't seem to keep one. 

Yesterday I picked up a pound puppy, and prayed and prayed that I got the right dog this time, and it wouldn't run, and it wouldn't bite, and it wouldn't get stolen.   Cause I don't think my kiddos can take another loss.....

Her name is Sweetie.  She's about 4 months old, and she's a dog, we have no idea what kind.  And Princess has bonded with her instantly.  I so hope this dog makes it. 

Kiddos are outside playing so I'm gonna go join them with daddy and enjoy the out of doors, and pretend that the dark-night side of life doesn't exist.

Good morning

Well  vacation continues on.  So my net time is at a all time low.  We watched Star Wars Attack of the Clones last night.  And I read a book most of the day while DH and the kiddos played outside.

The vacation stuff from camping just stayed on the table.  bwaha.  This morning DH put most of it away, and is actually doing the bathing routine 'cause he's usually not here to do it and is giving me a break. 

The vacation (camping part of it) was actually quite nice.  Nothing spectacular happened I just finally got a bit of the burden I've been carrying on my shoulders since Rainee's last hospital stay to roll off a bit.  I'm not sure why maybe just time, or not doing anything extra.  It just left a bit and that made it nice.

It also helped in that my 'ils have a chronically sick adult child.  Who has been that way most of his life.  (He has diabetes and substantial asthma).  They understood our fears and worrys for Rainee and gave us the ability to discuss them with them without condemnation.  

We did a lot of swimming in the pool, and quite enjoyed it.  The big kids learned to swim the width of the pool without their water-wings.  The medium sized kids reduced their fear of the water (they haven't had as much pool time do to all of Rainee's crap the last year).  And Rainee well she LOOOOOOOOOOOOOVES the pool.  With a capital L.  She played and played and played and giggled and oh my was she fun to watch and snuggle with.

We did some touristing. And some camp-fire watching.  And all in all it was what a vacation should be.

With the exception of course the oxygen, apnea monitor, and pulse ox we came with.  It hung over our shoulders a bit.  As well as the info from the Dr. that she wants us to re-do the sleep study in two months.  And that they are doing the Ph probe study for reflux at that time.  I'm so tired of putting Rainee through crap like that.   Yeah their non-invasive, but you get prodded, and the pile of residents pile in and out.  And you answer 100 million questions about your child, and are reminded a 1000 trillion times that things aren't normal with your child.  And it SUCKS!

But, I guess its our new life and I will eventually learn to deal if not accept it.

I have a few pictures, but haven't uploaded them off my camera yet, so maybe sometime soon.

I visited a few sites, but didn't leave comments I'm sorry I'll get back into the swing of things when dh returns to work.

We're back.  It was fun...

I'm tired.

Oxygen and Camping don't mix real great, but we survived.

Kids had a blast.

IL's were well-behaved.

More details later. 

Here's Rainbug and her first easter.  I don't have the patience to upload anymore.  She had a lovely birthday.  We took her to the game farm, and spoiled her and hugged her lots.

Today my extended family celebrated Easter and her birthday.  It was tons of fun.  The above picture is Rainee with her first easter egg.   She actually found "3" but that's cause we put 3 right at the front door for her.  LOL

We had a ton of fun at my moms house with all the cousins running around and filling up on chocolate.

I will be missing for the next week.  We are headed out to Astoria/Seaside to enjoy some relaxation and the in-laws.  I'd appreciate prayer that Rainee stays stable, and mommy "enjoys" the ils.  hehehe

This is where we're headed.  Have a great day all. 

We made it!

       Rainee's birthday is today.  She is a Big ONE year old.  There were days I wondered if we'd make it here.   But we did.  From here

to here

to here

to here taken 2 weeks ago. 

Some of these pictures are blurrier then my normal ones.  But they all are part of Rainee's life.  And most taken in hospitals.  But hey she made it to a year.  And we love her dearly.  And I'm so glad God gifted me with Raining Grace. 

Happy Birthday Rainee, may the next year be much less eventful!

Good morning

Rainee's alarms only went off 4x last night.  And she actually slept a couple 3 hour lumps of sleep.  I feel heavenly!

Today I have Rainee's P/T appointment.  And nothing else.  I'm not sure what's going on.

We've just been lazy doing a minimal of house work, and reading lots.  (both of us) 

Oh yes, and dealing with the Home Health Care Company as we're still nailing down loose ends, and getting the supplies we need for functioning.    We're currently reading this series (point above or below wherever it sits)

And basically we're just being lazy, so not much to write about.  Which is kinda nice for a change.  Have a great day all

Good morning

Did you know I have a husband who can sleep through pretty much anything?

Sunday night the apnea alarm went off 6 seperate occasions.   I shook Rainee gently and she started breathing and I slept.  DH never heard any of them.  This alarm is EXTREMELY loud!   Rainee also woke up multiple times to eat, get her binky etc.  I don't keep track of them anymore as well its too depressing.  snicker

So last night apparently dh wasn't as sound of a sleeper.  I've gotten so I can wake Rainee up from a apnea event with hardly waking myself up.  Which is good seeings I have to sleep sometime.  The alarm went off beep, beep, beep, beep.  The third or fourth beep I rolled over and touched Rainee.  Rob however sits bolt up in bed.  And hollers LOUDLY.  "What the heck?"

Yes, dear hubby thats the alarm, its been going off every night for almost two weeks.  Now you know what it sounds like.  BWAHAHAHA

I'm glad he's such a alert fellow.

He of course scared the bejeebers out of me, and as a result it took me a half hour to get back to sleep, but its good for a laugh this morning. 

Silly guy. 

Silly things from my kiddos.

MariMan has EXTREMELy stinky diapers.  Yesterday I "smelt" him on the trampoline.  I pulled him over to me and sent Princess to get a diaper for me to change him.  I looked at him and said.  "You know you do the environment a great disservice by the smell of these diapers."  He looked up at me with a big grin and says.  "Yep!"  And that sums it up.  Oh that and while I was changing it he plugged his nose.  *snicker*

Kaylin ever since the last hospital run, has been announcing several times a day.  "I think I'm getting sick."  We assure her she's healthy, and healthy's a very good thing, and she should be greatful for it.  etc, etc.

Soooo Sunday she came up to me and announced in all seriousness.  "Mommy,  I think I'm getting healthy."  *grin*

Jen is getting ready to move.  She must be highly distracted.  Cause she caught a pixie on the end of her rope, and didn't even know it, and let it go without torturing it.  hehehe.  A prime opportunity lost.

Today the plan *was* to go on a bike ride with my brothers family.   It is however cold and foggy outside, so I'm not sure what the plan is. 

How about bed and a good book?  Thats what I did yesterday.  I read almost a whole book while hiding out in my bedroom.    I have a wonderful dh who let me do this.  And it was such a lovely treat. 

Do you think I could get away with it again today

Good morning

I'm much more human, and a LOT less whiny today.  The setting the probe things on Rainee went MUCH smoother last night which helped.  And Rainee actually slept a couple 2 hour lumps of sleep which also helped.

The biggest help of course is I KNOW DH is home today, so if I need sleep I can just wander off and get it. 

My brother was quite sweet and designed a T-pee looking thing to hold our Johnny Jump-Up.  We had no where to hang it for Rainee to strengthen her legs.  So she's learning how to jump in it.  I just know the kiddos are gonna want to use it as a fort sooner or later LOL

We have 12 foot ceilings which is why there was no where to hang it. 

I have no idea what we're gonna do today.  But hopefully it will be fun.

More details later

God is good!

All the time.

All the time

God is good!

Sleep is highly over rated and I don't need it to live right?   Cause if I do need it, I'm in serious doo-doo.

Rainee woke up about every 40 minutes last night, for reasons unknown to me.  I got two whole hours of interrupted sleep somewhere in the night~~is that good enough?

How long can a body go without sleep before they go insane?

I know nobody has the answer to that.  I wish I did.

And WHINE!

I'm struggling with greatful spirit.  I have little to be thankful for right now.  Okay thats not true, I have lots to be thankful for, but finding it in the midst of sleep exhaustion and worry, and alarms.  UGH.

I HATE alarms.  Friday night was semi-funny, but it is getting old.  It takes us over an hour to get the alarms, oxygen and Rainee all asleep at the same time.  Usually with a couple false-alarms.  *sigh* 

I was a bad mommy last night.  I had everything the way it should *I thought*  Rainee was asleep.  I laid her down in her crib, and both machines started alarming.  I bent down to adjust probes leaned on the crib and the crib leg broke.  The baby woke up, and mommy reached the nearest thing and threw it across the room.  It was tupperware fortunately, and didn't do any damage. 

Oh, and then I cried.

I'm human.  And I'm feeling quite breakable.  I deal with Rainee all night, and then have to get up and pretend like I have the energy to be a good mommy.  I don't anymore.

For the next 2.5 weeks (after today)  Rob is off on "vacation"  maybe we'll get things into a routine in that time.  I so hope so, because I'm ready to throw those boxes of alarms out and do I don't know what. 

Okay moving on off the vent.

Swimming was fun last night.  Rainee LOVED it, and giggled and floated the whole hour.  She was a hoot.  Mari was scared of it, but he had fun in spite of his fear.  We will have a pool for 5 days of our vacation, so hopefully we can convince him water is fun.  He hasn't had near the time in the water as the other kiddos due to Rainee being born right after he came.

I need prayer.  And wisdom.  I'd appreciate any I can get.  Thanks