Oye ... Hospitals....

So on the 1st ...  I had this moment of panic.  I remembered that Nathan had his sleep study the following night.  Noah had been questioning me (like he does a lot) on if he had any appointments the following day, and after some teasing and stuff, I said "Tomorrow is Saturday, who has appointments on Saturday?" and then I was like BAM ..... yeah sometimes we have Saturday appointment.

So yesterday was spent with a lot of last minute packing.  I remember EVERYTHING (including the kitchen sink!) except for Nathan's large syringe we mix his meds in to put into his G-Tube, and the small one to flush things.  F*** ...

We needed about 50% of what we brought, but damn it.... I was PREPARED!  HECK YEAH!

So we get to this ...  hospital, that we've never been to.  Had to be there at 6:30 PM.  We left early because we didn't know what traffic would be like, the roads weren't the best and we ran into some mega fog.  I took some pretty amazing pictures, but we'll save those for another day.  Anyway, we find the Seattle Children's Sleep Study department .... in the hospital...  and go up to the 4th floor, walk in, check in ... carry on this little convo with the lady checking him in.

We turn to sit in the waiting room and there is a little one year old girl with a G-Tube, and she's playing with her tube.. lol...  so I was all like, "Lookie Nate, another tubie!  Show her you are a tubie too!"  and so he lifts up his shirt and we have this convo with the Mom about our fun lives of having more than one unique child ... (she had a couple other kids with medical stuff too) ...

But we got called back rather quickly.  We were shown where the parent sleep room was (because not both DB and I could stay in there with him) ... and then taken down to his room.

I had a ton of paper work to fill out ... DB asked for an IV pole, which they supplied.  I realized I forgot the large syringe and small one to do Nathan's meds, and we asked if they had any....

Now, normally, the hospitals don't like you bringing in meds - they like to dispense them themselves, unless it's a rather rare thing like his HGH or what not which we usually end up having to give the hospital - so they can dispense it.  But we brought everything (well almost everything) to make sure it was on hand in case they weren't going to supply it.  Including his HGH.  Brought his pump and his feed supplies (almost all of them) ..  and when I asked if they had the syringes - I swear to GOD she thought I was talking about a needle syringe instead of a  bolus syringe and medicine syringe.  She just kept saying "We're outpatient, we don't have that stuff" ... finally I just gave up.  We figured if we put his meds in his feed bag with some water, we could at least get it in him - and hope the tube didn't clog up.  There were a few beeps, but we got it done.  It's a good thing we were prepared for that.

So eventually - the fun of getting all the probs and sensors on him started. He was not happy.  But he tried really hard to be brave and not cry - though he was on the verge of crying the whole time.  Broke my heart.

(the book was beside him because it showed the steps - kinda)

He ended up watching Lorax to try to relax.  But he was so uncomfortable.  And he was so afraid to even move.

So I ended up going down to the parent room because once the sleep study test *began* there couldn't be any electronics on in the room. Nothing.  No cell phone, no laptop, not even the TV could be on.  I have severe insomnia.  I would go NUTS.  DB - he likes to go to sleep early ... so ... it just worked out better for him to stay in there with him and me to go not sleep in the parent room and have my electronic comforts of having stuff to pass the time.

Of course, if it were just Nathan and I - I wold have sucked it up and counted the cracks in the ceiling (no really, I did bring a book) ... but I feel like I picked technology over my kid, and it makes me feel like a bit of a wanker.

:: sigh ::

But shortly after going down to the sleep room, I got a message from DB to come down to Nate's room.

Mind you ... Nathan gets connected to all this stuff.. head wires, face wires, straps around his chest and belly, leg wires, chest wires, and he says they "hurt" but I'm hoping they are more uncomfortable. Now, you take a child, who has Autism, who has SPD, who has a fear of hospitals and medical staff.... and you do all this to him. You want him to sleep. Nathan doesn't have a hard time falling asleep. Usually with in half an hour of getting his nightly meds, he's taking his happy behind to bed himself - and putting himself to bed.

So ... he's on the verge of tears, he's trying to be brave and he's trying to hold it together. When I ask if he's okay he shakes his head no and says it hurts. I ask him where and he shakes his hands frantically - meaning he hurts all over. All the wires and probs and everything - I'm hoping and praying he's just *uncomfortable* and not really hurting - kwim?

So... Dennis sends me a message to come back into the room with him and Nathan - and so I go down there and he is sitting on the bed with Nathan. He goes "I am trying to help him get comfortable" ...

Basically Nate was afraid to move because of all the wires and straps and everything connected to him. He said he was in pain but I think (hoping) it was more uncomfortable. Anyway, so I picked him up and helped him kinda roll over onto his side. It's about 9:30. I left the room at about 9.

Literally ten seconds after I kinda help him onto his side, the nurse comes barging in and sternly says "I have to ask you two to go to bed, it's late and I need to wake you all up at 6 AM!" DB looks at her and says "he's uncomfortable and we're trying to help him" and she is like "well dad you need to go over to your bed, and mom to your room down the hall"

I remember looking up at DB and I got my mom don't piss me off voice on and I said, "listen, he wants to be on his side and feels like he can't move, we are trying to make him comfortable so he will go to sleep" and she goes "does he normally need help moving on his side?" I spun around and looked at her and said, "no he is uncomfortable and he feels like he can't move with all this stuff connected to him" and she kinda backed off a bit. "Well.... Blah blah" and she leaves.

Guess what, he was asleep  10 minutes later. Thank you! I know my child, WE know our child.  I realize that she's wanting to start this test, but you cannot START the test until he's asleep, and he's not going to go to sleep until he feels safe and comfortable enough to do so. I'm not disturbing him for fun,    Plus he's got his routine, when he's about to fall asleep he rolls over on his side, when he's actually falling asleep - he lets out this big sigh.  So yeah...  I think we know what we're doing and don't need to be scolded like little kids who are staying up too late for a sleep over.

She could have come in "oh is something wrong? Can I help?" No, it was like a pissed off parent coming to spank us... just rubbed us the wrong way and put us both in a badish mood towards her.

She was perfectly fine the rest of the time - but....  (rolls eyes) ...   I could have royally gone off.

So we got Nathan settled, he fell asleep with in a few minutes of rolling to his side.  I went down to my room to ... yeah ... stay up all night.   I tried so hard to sleep.  I actually fell asleep around 11:30 watching Celebrity Big Brother 2005 on YouTube on my phone, and woke up about 45 minutes later in utter pain because I forgot to take my pills before falling asleep, and the room was hella HOT and I can't sleep in hot rooms, and there was no way to adjust the temp... and the parent area did NOT have an ice machine... OMG I could have cried.  No ICE!  That's like hell for me.  I have to have super cold drinks, which involves ice!  And the hot room.  And the pain.    Anyway - I just basically laid there all night watching CBB and TRYING to doze off.   Just didn't work out that way.

But I got dressed and got everything packed up, put it all on the bed, made three hot chocolates in the parent area and took them down to the room a few minutes after 6 AM.

I figured the nurse would be in there - but she wasn't.  So I woke up DB and we let Nate sleep until the nurse came in and started to pick at him (getting the stuff off) ...

And I had forgotten to take a picture of his drawing on his feed bag (which we started doing again per-Nathan's request.

After she got all the stuff off him, Nathan and I went in the bathroom with a travel size thing of baby shampoo, a comb, a cup, and some towels, and we washed all that crap out of his hair.  It took half the bottle of shampoo but there wasn't a trace of it left in his hair!

So we finished packing up and no one had to tell us twice we could leave...  Nathan did get a new lovey for being so awesome from the nurse :)   He loves his stuffies!!

We left there and it was still dark out.

We were all super hungry - needing a good warm meal - we ended up stopping at Denny's on the way home.  Nathan got hot chocolate, and eggs and pancakes, and bacon!  LOL...  it was good, the waitress was AWESOME ... the cook on the other hand, both DB and I asked for eggs over easy, got them over hard, the toast was super hard and pretty dark, and tasted burnt... Nathan asked for 2 bacon and got a bacon and a sausage (the waitress brought over 2 more bacon though, so he ended up with 3 bacon, lol... and there was a SERIOUS lack of hashbrowns, but to be a bit fair - I can never have enough hashbrowns.) ...

Notice the crayons lined up just so at the top of his plate....

Nothing like being home!!

SLEEP STUDY UPDATE: We won't get the results of Nate's sleep study until our phone appointment on February 3rd. Nathan is a very very restless sleeper, he's always been a loud snorer, and with his issues with his mouth (cleft, VPI, etc) it's a bit more of a concern. The sleep study went well (other than the blip with the nurse's attitude) ... he was snoring loudly (which is one thing we want) ... he didn't move around like he normally does at home but he never does in the hospital, and having all that stuff connected to him - I didn't really expect him to He was restless too, so I think they got a good image of his sleeping. 　 Reason for getting the sleep study, Nathan has a disorder called VPI (http://www.seattlechildrens.org/…/chromosomal-genetic-…/vpi/) ... they want to do surgery on him, but a year ago when it was determined he did - indeed - need surgery for it, the doctor said he wanted to wait at least a year because he was afraid Nathan would die during the surgery because he has such a small airway. So now they are re-addressing the situation and doing initial tests. The sleep study is part of this process. 

We got home, I kinda crashed most of the day - I slept a couple hour chunk, then I was working on stuff and dozing off all day ...

There will be a post up at MY UNIQUE FLOWERS with other pictures - probably tomorrow.  Soon share the awesome photos I took on the way there and home ....  too...

Thoughts about Marriage .......

I have a *friend* from high school ...  and she recently announced her New Years engagement ... in other words, her boyfriend asked her to marry him on New Years ...

Okay -  not a biggy right?  That's super exciting news and everyone should be giving her major congratulations!  Right?

She has been through a lot over the past year, a lot of bad things that she's overcome ...  or at least managed to muddle her way through ....

So people, her close friends and family should all be excited for her, right?

It upset me, for her, the lack of excitement that was put out there.   Apparently it was a whirl wind romance, there was a lot of cautionary warnings and "make sure it's not a rebound" ...

It kinda took me back a bit....

In the U.S. ... I have read that 40% of marriages end in divorce after 8 years.  Now I'm not sure if that's a 8 years to 20 years - because 20 years is after 8 years, or if it's 40% end in about the 8th year.

So ... with that said, I want to explain something.

When I was 18, I had been in 3 high school type relationships.  I then met my 1st husband.

I wanted nothing more - in my life - than to be a MOM....  and I figured, out of all my friends, I would be the one who had the babies outside of marriage - and probably never get a man who could tolerate me.  I had been sick for a couple of years, and I guess I just never expected anyone to say "oh yeah, hey, I'll take that on!"  At 18 I was feeling better, but health was still hard.  But I met my first husband.

We had known each other for a few months, our first date was on February 2nd, and on February 19th he dragged me out to a jewelry store and wanted to know "what I liked" and ended up getting me a ring.  He never actually asked me to marry him.  I drove out to my Mom's house, and I went in there - and I looked at her, still in shock, and said "I think I just got engaged."

I didn't even know his last name at that point.  True story.  But the thought of being in love, and having that unconditional love filled me with just happiness and joy.  Looking back at the me - when I was 18 - I realize now, I wasn't so much in love with the man, as much as I was in love with the thought of being in love and being married and having a family.  I was young, and I was caught up in all the thoughts of "this is what I've always wanted." I was excited.

I don't take marriage lightly - when I think of marriage, I think of forever.  I think of growing old together and making things work.  My mom never got married, but she had a few long term relationships.  I can count on one hand the number of guys I remember her being with . without using all five fingers.  LOL....   (three, I remember three, Joey, Rick & Russ) ... my "example" was set by her parents.  My Grandparents.  My Grandma and Grandpa were amazing.  They were married - til death do us part.

Know what I mean?

And I did that in my first marriage.  I did it to the point of putting myself last, and that's what my first husband counted on.

I did learn a lot in my first marriage.  I learned that you may never truly know someone.  20 years later, and I just recently learned what a joke my first marriage was.  My ex lied to me, for the 10 years our marriage lasted, and continues to until this day.  He lies and makes up stories in order to make himself feel better about himself.  He would tell me he did horrible things (like cheating on me) and wait to see how I reacted - testing "how much I loved him" and if I would stay in the marriage.  Until I finally broke.  It came down to my children having a good example and being safe, and I would choose my children every damn time.

You can think you know someone, inside and out, and find out - you never truly knew them at all.  This is not only in regards to marriages and serious romantic relationships, but also friendships, even with relatives.  It's not exclusive to romance.

My first husband is a bad guy, he did HORRIBLE HORRIBLE things, but that isn't a reflection on me or my children.  The fact that we are even associated with him in any way, kills me.

But I cannot remotely say that I would change my relationship with him.  I got two amazing children.  I wouldn't trade them for the biggest library in the world (and that's saying something.)  I learned a lot about myself.  I learned a lot about people in general through my marriage.  I just ....  I had to go through that in order to be the person I am today.  At the end of the marriage, I managed to grow some balls.  And I'm proud of myself for that.

Then I met my ex boyfriend ...  and we were both going through divorces.  His was messy, and complicated, and mine wasn't for the most part.  It was filed and over with in about 6 months.  We had one court date, and that was to declare the end of the marriage.  He was in jail - it made things easier I suppose.

My ex boyfriend, got spooked (he told me at one point) ... he said he could see himself marrying me and that's one reason he broke things off.  But honestly - he never broke things off, I ended p breaking things off.  He was "dating" his next wife and still coming around me for things he shouldn't have been doing.  I didn't know he was doing anything but dating - so we had a relationship, decided to see other people (too), and continued to have a relationship, but he was serious with someone else.  So I became his dirty little secret.  I realized that one day, and shortly after, basically told him I couldn't talk to him anymore.

Several other guys I dated between the end of my marriage and meeting DB - these guys would say "will you marry me" and be totally serious.  I thought they were all crazy.  Apparently I'm just that type of girl that guys can see settling down with ..  I have no idea.   Regardless, any time these guys would get like that, I would back off from them.  It was kinda creepy.  After my ex-boyfriend, I was all

Then DB came along and we first had contact on June 3rd, started really talking on June 5th ..  and on June 6th he sent me an email with "will you marry me" on it - we were web-camming at the time, and I opened it and bust out laughing.  He laughed and said he was glad that I took it as the joke it was meant to be.  We talked non-stop though.  Computer chat, on web cam, on the phone...  if there wasn't a reason we couldn't talk (him working, my busy with the kids) we were talking somehow.  On his birthday, June 8th ....  he said to me, all serious....  "Will you marry me?"  and I realized he was serious.  It didn't creep me out.  I knew we were falling for each other.  I had told him that I wanted to take things slow, and I told him he broke the damn slow button.  He took that slow button and threw it over a cliff.  So when I answered him, I said - simply - that it seemed to be the way things were heading.  We hadn't even met in person at that point.  He said he did it because he wanted something good to happen on his birthday.

When we met, I asked him to be honest with me about everything -  I know he lied to me about some stuff.  I know the truth about - at least SOME of it - now.  9 years into the marriage, and I'm STILL learning a lot about him.   I feel like I'm an open book, I'm super honest.  I figure I want someone to know me and make their decisions about me without being fake.  But that's just me.

But we did really get to know each other in a very short period of time.  All we could do was talk.  It was like a few years of dating crammed into a short time.  It was kinda amazing.

But, my point is....  my first marriage, from first date to the day we got married was four months time, plus I was pregnant with Calahan when we got married.   We were married for 10 years.  Five years of that marriage was CRAP.  I should have gotten a divorce at 5 years - but I wouldn't have had Noah.  I should have divorced him in 2001, but .... then... I might not have been in the spot to meet DB...

My second marriage, from the time we "met" online to the day we got married was 6 months, and I was pregnant with Nathan at the time.  I'm not saying our marriage has been easy, either, but it certainly hasn't been CRAP like half of my first one.  And DB and I have been together now for 9 1/2 years.

So my WHOLE POINT to this blog is....

Sometimes you just KNOW.  Sometimes there is no question that you belong with someone.  My first marriage may not have turned out the way I envisioned, but I cannot regret it.  Regretting it means I regret my kids, and that's just not possible.

Yeah - my first marriage didn't work out (for REALLY good reason) and there isn't anything wrong with that.  I grew into a very strong woman in order to get out of it.  Getting out of it, brought the truth of it to light - and even though I am still working on completely healing...

It just makes me sad to see someone tell another person they shouldn't be engaged - that they should know someone at least five years before getting engaged because you never really know someone until five years have passed.

HA HA HA ....  truth is, you cn spend your life learning new things about your partner.  That's the truth.

Yes, you probably shouldn't act like me and dive into marriage like I do; however, I have had two marriages that lasted ten years (well, ten years and almost ten years) ...  and that's saying something in this day and age where divorce is like popping a tic tac.  I have friends who have been married three or four times.  A lot with two failed marriages that didn't even last five years.  My own husband (yes DB) had two marriages prior to ours that lasted less than a year.

I'm probably not a very good example, I'm sure - but I truly believe that marriage is making a commitment to one person, to get to know them for the rest of your life, through good times and bad, sickness and health, not bailing when things get rocky .... it's working through the problems and it's about communication.  It's commitment to put the work into it.

HAPPY 2016!!

Can you believe it?  I remember when I started to write my book (series) ..  I thought "Oh I'll have this published by that point in time." ...... yeah... no.

So ... this year, Calahan turns 20, Noah turns 14, Nathan turns 9, Jessa will turn 12, Kaedyn will turn 8 ..  Dennis will continue to be older than me (ha ha ha) and I will be turning....... dun,dun,dun... FORTY.  Holy shit.  Yep.  Hoooooooooooly shit.   Yeah... I think I'll stick with 29.

Calahan and Alana are getting married this year (as plans are at the moment) ...

Hopefully there are no babies...  LOL.

X-Files and Gilmore Girls are coming back!  X-files in just a few days now!!  OMGosh.  Fangirl!

DB and I will also celebrate TEN YEARS TOGETHER...  amazing.

We try to have a good time on New Years Eve every year.  Usually my kids end up passing out and they are asleep by the time Midnight ROLLS around.  However, Kaedyn seems to have inherited my insomnia, Noah is a teenager and taken on the whole sleep into the day and stay up through the night thing, and since he homeschools ... yeah....   Cal is always up, and Kale has actually been with us a little over a year now.

Regardless, we had fun.   May the FORCE BE WITH YOU .....

 Even Daddy had to get in on the light saber fun ...

We had homemade burgers with all the fixings and some fries....

Nathan absolutely loves his aquarium.  Our filter broke and we needed a new one and finally we managed to get one.  So our tank is starting to clear up again (thank goodness for resilient goldfish)

 DB wanted Margaritas tonight, and I am NOT a fan of alcohol.  I seem to have a super sensitivity to the taste of alcohol and I just can't stand it.  But he wanted me to try it - so I did.  I had one sip, the face I made or the next twenty seconds made him say "don't like it?  I might have made it a little strong" .... LOL ....

Nathan took some selfies with my phone ... yes....  he knows how to take selfies....

This is what I drink, fake champagne ...

But I liked taking pictures of the salt on the rim...

Then we had to take our annual "Happy New Years" pictures ....

Nathan went to bed super late ... but before midnight.  Everyone else (besides Elly) was awake to bring in the new year.   It was a bit funny ... after waking up and giving my husband, the love of my life, a big kiss at midnight, I ran out in the living room and I opened up our front door - I said "you hear that?"  to Kaedyn,  He's like "what?"  I said "Do you hear the fireworks?"   He said "Yeah" and I pointed to the TV where we were watching the fireworks going off in Seattle, I said "You hear those fireworks!"

And then I had to take or annual .... "My children are a bunch o lushes" photos....  with an empty fake champagne bottle.... Of course it was Elly's first year, I made Kale do it this year... LOL... and Kinsleigh made Cal and I laugh when she stuck her tongue down the bottle several times.

Elly woke up when I was trying to do her photos ....  she's like "WHAT THE...." .... crazy woman with the camera ...

"Humm... it smells kinda good" ....

"I think I will keep this" ....

Kaedyn posed with the fireworks... lol....

So I have some goals for this year.  We're going to try to blog every day again.  It is my therapy, and my release.  With my memory going - getting worse - as this stupid group of illnesses get worse ... I want to make sure I document stuff.  The rest of the stuff, well...  those are pretty much my goals always :)   Just writing them down.  Being accountable....  

I didn't blog every day last year (2015) but I did really good for a looooooong time.  And I am proud of myself for that.  I had 318 posts in 2015.   That's a lot - and definitely my top posting year yet.  Which is awesome.  So I hope to beat that this year.  And feel the need to throw out there that I didn't write 318 days, some of those days I had two or more entries in a day.  LOL....  still, hope to beat it :)

And now that it's 5am .........   I think I will try to sleep for a few hours.  Seems to be my pattern now.  Up until 4 or 5 AM and sleep until 11, maybe take a nap at some point...  but usually not.  I'm having a really hard time.