The Lords go Marching on...

This is from a recent status update on FB that I will get to in JUST a moment...I feel like if I don't record THIS week...of all weeks...than I might as well be done with blogging forever...

It's been crazy town...

to the max

BUT...the good thing, is that SOMEHOW...through it all...I am surviving...although, I look forward to a time where I am living, or even thriving...but we'll get there...for now...let me just tell you about my past week...

Shall we??

SAT:  Oakley was baptized.  She was beautiful.  It was a perfectly crazy day filled with last minute dress shopping, ice cream, cooking, and getting ready.  It was hectic, but we still made it on time.  I surprisingly wasn't feeling terribly emotional or stressed.  I was enjoying it, and was super proud of Oakley.  She was beaming.  Once they greeted her with a towel, I went back there...I immediately gave her a huge hug, in which case...I could not let go.  I held on tight, because I was holding a perfect angel...and I felt it.  We both cried, and the words we exchanged are mine to cherish, but it was a moment not expected, but I will remember always...

We then had a BBQ with friends and family. It was a nice evening...no drama...we were unable to confirm her that day because there wasn't a bishopric member in town, so we were planning on doing it the following evening...

SUN:  Day of confirmation.  ALSO, day dishwasher floods EVERYWHERE in the kitchen...NO GOOD.  We sopped it up and texted the landlord...

Later in the evening it is about 7:15, and most of the family is to the house, and the counselor to confirm her is to be at our door any minute...but wait...we are missing a crucial element...BRIAN!!!  After several phone calls, and different routes, I find that he is getting off work late.  There had been a miscommunication somewhere...SIGH...in the hustle and bustle, and the craziness, I decide to step outside, and get some fresh air where no one can see me fall apart...I am just a little overwhelmed in life trying to organize schedules for 7 people, and many times, I have to reschedule these schedules...it's very consuming...

While out there, family members had come out front to express their frustration not knowing I am there as well.  It was just too much.  I walked away.  I didn't want that spirit in my home on the night my daughter was to receive the spirit...so I left. 

MON:  I was a big fat mess.  I am evaluating and re-evaluating in my head myself, my life, just everything...I definitely try super hard to keep up.  Romy generally has 3 appts a week...but most of the time it's more.  She goes to three days of therapy, and then sees an ophthalmologist, neurologist, cardiologist, ENT, GI specialist, and her regular pediatrician.  This is just her...we have four other children that have their own needs...and a house, that has it's own needs...I was just feeling the stress of this, and the stress of my husband who works SO INCREDIBLY HARD seven days a week. 

TUES:  Oakley and Parker have surgery.  Oakley was oddly excited for it.  It quickly faded into a poor lifeless recovering girl.  She was miserable.  Parker on the other hand was feeling good...he was weak coming out, but by the time we got home perked up and wanted to play his DS.  Oakley laid lifeless on the couch.  I had to keep telling Parker to relax, that doing to much would not be a good thing.  I was so lucky to have a friend from high school come and help me.  She had seen me post about the kids, and wanted to help...I know it was answers to my desperate prayers for help.  With Brian gone, I needed another set of hands...and I am so thankful for her...!!

Later that night, Oakley was just so miserable...in pain, and we felt helpless.  We had our home teacher come over and we gave her and Parker blessings...

WED:  I wake up sick.  I had a cold already, but this was a stomach thing...I felt awful.  There should be a rule about parents getting sick that have to take care of sick kids...or ones that have just had surgery for that matter!!  Just as I come out of the bathroom from loosing my guts, Oakley is standing weakly crying in my room saying she threw up and Blazer was jumping and playing in it.  I just wanted to cry.  I wish it ended there.  She couldn't keep anything down that whole day....including pain medicine.  I could tell we were in a bad downwards spiral....

MEANWHILE...we have a guy in our house tearing out our kitchen.  Remember that dishwasher that flooded??  SIGH...

By about 3pm I call in to the Dr office to see what I can do for Oakley...they told me to take her to the ER.  So I packed up my poor sick girl, and took her in.  They immediately gave her fluids via IV, but didn't give her anything for pain or nausea.  Her oxygen levels were low, so they did an xray to make sure she didn't have fluid in her lungs.  Finally after about an hour and a half after the bag of fluids had gotten in her, they ask her to take a couple sips of water...she IMMEDIATELY threw it up.  They realized how bad she was, and gave her nausea meds, and morphine.  I was annoyed that they let her lay in pain for as long as they did. 

Once she was stable, we took her home.  She seemed better, and even asked for Popsicles.  I was relieved.

The neighbors' kittens serving as pet therapy...so cute :)

THURS:  Our dishwasher guy is tearing out the floor, but is only tearing out a 2'X2' section...I was concerned and called Brian who does this type of thing for a living, expressing that I could see moisture on both sides where he was tearing it out, and the section he was tearing out was awful, he was scooping it out like butter...and it was covered in mildew on its way to molding.  We tried expressing the dangers to the landlord who had full confidence in this guys' experience.  We were mortified.  We sent out our own guys after he left to get second opinions, and took some moisture readings...they were up to 50% about two more feet on each side of where he had torn out. On top of that all of the interiors of the cabinets were saturated.  This was a disaster cleanup project, and more importantly it's a health hazard.  Without drying the floor out, it will be mold in a week.  We aren't sure what to do at this point, because our landlord won't listen to our concerns.  We took pictures of everything, and are just trying to figure out if moving is the best idea or not...

Oakley was feeling better, but Parker is now going downhill. He did too much that first day...!!  He threw up a couple of times, and we just couldn't seem to keep his pain away.  He luckily didn't get to a point where he couldn't keep anything down, but he wasn't doing good at all.

Thursday nights are my nights.  Brian was home early for once (early being 9pm) so I thought I would go to volleyball like I do most Thursday nights.  It was such a great release until....BAM...ball in face.  One of the girls served the ball, and the one receiving it kicked it for some reason, and I took a direct hit to my eye...

IT SUCKED.

My eye blacked out and lost vision on half of it, and my pupils went crazy...one was huge, and the other was small.  The girls around me had the "this looks serious but we're trying to stay calm" voices, so I knew it didn't look good.  It sure didn't FEEL good either!!  They got me ice to put on it, and we decided to see if my pupils would even out.  After about 15 minutes, they seemed to go back to almost normal...so I decided to go to Denny's like we do every night after volleyball.

My eye HURT...I was getting concerned because my vision seemed extra blurry.  I decided to google it, and everything that I saw said to go in immediately in case there was a torn retina.  I called Brian, and let him know what was going on, and he wanted me to go in.

SO, for a second day in a row...I was BACK to the ER. 

JOY

They checked my eye for immediate and obvious damage, and luckily I didn't have anything emergent going on.  So they sent me home with the advice that I be seen by an ophthalmologist within 2 days unless my eyesight changed, in which case I should go in immediately.

When I was going to bed, I noticed that something seemed weird.  The part of my eye that had visually blacked out seemed to be coming back.  It was almost like when you look at a flash and then close your eyes...the negative light feeling....only with your eyes open.  I called back into the ER, to make sure it wasn't something to be concerned about but they thought it could have been the drops they put into my eyes. 

FRI:  It wasn't the drops...after flushing my eyes out the night before and sleeping...I still had this weird vision thing...So I went in to the DR.  He found that my retina had been pulled.  He explained it as being similar to pulling a ligament.  He also found some nerve damage in several places on the right and in the bottom of my eye...which is explaining the vision disruptions.  We are hoping that it heals itself and my vision returns to normal in several weeks...I'm not going to address the "if not" scenario here...

This is about when I write my FB post I referenced in the beginning of this post...it went like this..." Mine eyes have seen the coming of the glory of the ball...well, maybe not...if I would have seen it I'm time I would have ducked and avoided the nerve damage and pulled retina...oh what fun...the Lords go marching on..."

Sometimes I feel like that is what we are doing...just marching on. 

The moral of the story is: No matter what happens...you just have to get through the day, because tomorrow will be a new one...and even though I wonder many times how I will get through tomorrow....some how....some way...I make it through...

Dear Blog...I'm Blah...

Dear Blog...I feel blah...

Actually, that's not exactly what I feel, cause to me blah is just kind of a down -slash- indifferent -slash- slightly bored with the situation -slash- maybe tired feeling...

I feel OVERWHELMED...ya...that's it...

Do you ever stop and think...I WISH I WAS BORED??!!  Today is that day...I wish I were bored.  Just a little.  Don't get me wrong...I still have days that I don't get out of my pj's AT ALL...but it's still filled with...what do I have to do tomorrow, what am I not getting done today, what am I forgetting to do...ETC...

The two younger boys had ENT appts today to see if they needed to have tonsils and adenoids removed.  Oakley already had her appt, and has to have hers out, along with something done with her sinuses, I'm not even sure exactly what it is at this point..some surgical procedure. 

Parker has to have his tonsils and adenoids out...and to top it off, I had been noticing that he asks "what" a lot, and even when I whisper in his ear, he tends to not hear me.  Well, an hour later after doing a thorough hearing test, we found out that he doesn't hear at a certain frequency.  We don't know what has caused this, and his prognosis is to just watch and wait...thankfully...

Blazer doesn't have to have his out...YET.  He has trouble breathing through his nose, and is complaining of his throat hurting a lot, but he is only 3.  The longer we can hold off...the better.  And frankly, the thought of shoving meds down his throat doesn't sound that appealing post surgery...give the guy a couple years...

So in the meantime, since I have NOTHING better to do...Romy still has all of her appts, and will start her constraint therapy soon.  This is where we will cast her good arm to encourage her to use her "bad" arm.  This will consist of six hour a day treatments for two weeks. 

If anyone knows how to do this and the surgeries, and keep my other children entertained, keep up on my businesses, and keep my brain from exploding...the advice would be greatly appreciated.  I am out of ideas.  OH, and suggesting husband helps is out...he works 7 days a week...the poor guy....

WELP...that's a wrap.  If you don't hear from me in a few weeks...or so...please send help STAT....

Where in the World is...US???!!

It reminds me of that show I used to watch as a kid "Where in the world is Carmen Sandiego" (or something like that) 

We really do exist, and I really have WANTED to post on my blog, and kick myself pretty much daily for it, but what I have come to the conclusion is that I am not going to feel bad for not blogging...I will post when I can...it doesn't matter that my daughter's birthday won't be ON (or close) to her birthday...as long as I get things up, I am fine...or something...

On to the REAL story...

What have we been up to...??  Well, our summer has been CRA-ZAY!!!  Our little Romy has had some surgeries.  We finally got into the ENT back in May where we learned that she isn't hearing out of her left ear, and she has some breathing and throat problems...So as of a couple weeks ago today, my little sweets had some surgeries...Tubes put in her ears, Adenoids and Tonsils taken out, she had to have her Cleft Larynx repaired, and then she had a bronchoscopy with biopsies in her lungs, esophagus, stomach, and intestines. 

Before her surgery, we were feeling bad, like we were just going to ruin our happy girl...it was kind of depressing...This was her the night before...

We got to the hospital at 6:30 AM...I am NOT a morning person.  Romy on the other hand was in a delightful mood even though she was STARVING...we had to bring her current meds, and she looked like she was self medicating for her impending doom...don't worry...the lid was ON... ;)

 She ended up having a huge infection in her tonsils and lungs that we weren't expecting to find, so we were thankful the surgery happened when it did...it was rough on her...more so than I was expecting...but really, how do you plan for something like that with a baby??  When she comes out of anesthesia, she is a thrasher...I learned this on her two previous MRI's...well, add a misplaced feeding tube, and four surgical procedures, and you have one UNCOMFORTABLE child.  She was extremely upset for about two hours, when suddenly bright red blood came streaming from her feeding tube.  They Xrayed her to find out that they had put so much tubing in her that it looped right back up into her esophagus to her surgery site...which is PAINFUL...sigh...here is what happened right after they took it out...she was exhausted...

She stayed in the PICU most of the day, and then we went to the regular Peds floor.  She didn't sleep well, and due to the infection in her lungs had to have several treatments throughout the night so that she could breathe...it was really rough.  We really didn't sleep. 

The next day was filled with wagon rides.  It was the only thing (other than Nubane) that would keep her calm, and not crying.  When we'd stop, or go back to the room, she'd fuss...so we spent most of the day walking her, and only went back to rest or plug her IV's back in...She really was just miserable.  I hated seeing her this way. 

We were discharged late that night, and this was one of the worst nights...her first one without the nubane.  She was so uncomfortable.  She screamed for a few hours, and Brian just walked and walked her.  We put her down to bed, and she was up several hours at night in pain, and crying...it was so sad...so exhausting...Her first week, we had to give her 7 different medications, and we were on a three hour schedule...and that included through the night. 

The nice part was having her on a feeding tube...the bad part, was having her on a feeding tube.  We could tell that it bothered her nose, and wasn't comfortable, but it also made giving her meds so easy.  No fighting or holding her down to take them...

By the second week, her spirits were a little more perky.  She was still miserable, but not lifeless and sad...so it was better.  We had one of our babysitters come and stay with us for about 5 days, and she was the BIGGEST help!!!  Brian has been working his tail off...7 days a week...I don't know how I would have survived the second week without help...I barely managed the first week...and it was just Brian, Romy, and I...the kids were with Brian's parents, and with my SUPER AWESOME friend...who took them for a few days...and spoiled them!!!  What would I do without my amazing support system...I have a lot to learn from those around me...!!

Romy is doing okay now.  She still seems to get uncomfortable.  She is HAPPY to report that her feeding tube is out...not before she pulled it out, and I had to put it back in of course...but it is gone for good, and she LOVES her food.  We have to use a product to thicken all of her liquids, but she isn't complaining. :)

As far as her biopsies go...we did get results back.  Her lungs did not show any signs of her reflux damaging them, so we are thankful for that.  This should mean that having her tonsils out, and her cleft fixed, she will not aspirate as much, which will greatly minimize her chances of pneumonia.  We will do some swallow studies to be sure though...

On a lesser note, we got back results from her other biopsies showing that she does have a condition called Eosinophilic Esophagitis...basically what I know is that something is causing these Eosinophil cells which are like white blood cells to form around the base of her esophagus...it can be dangerous, and is what's causing her to have GERD, or her extreme reflux.  It's usually caused by an allergy to something.  I don't know what kind of road we are going to be on trying to fix this condition...for now, she is on yet one more medication...

Prettie Birdie...

Well, I told you I would take a picture of my girls in their cute little easter outfits that I made....

SHOOT....I LIED....

Mama always says to do the pictures BEFORE church, and I SHOULDA listened...

Romy Lin annihilated her dress with nilla wafers and the nasty church carpet...seriously...they need a good carpet cleaning over there...we should get right on that...

ANYWAYS....luckily Oakley kept hers nice and clean, so here you go world...the cute little outfits...and by the way....Romy's is the same, so just picture it smaller!!!!!

Such a Model...LOVE HER!!!

It's a Small World...Do I know you???

Yes...that's about as funny as I get...what can I say??

Welp, this is the big D-LAND post!!!  It only took me TWO MONTHS to post the six pictures I actually took.  I had ONE goal in the whole trip...to get a picture of the group which consisted of our little  family, my mom, and my grandma.  I also would have loved a four generation picture, but I wasn't going to get too ambitious...

People...I suck...I didn't get EITHER!!!

BUT...I am happy to report that we had a marvelous time none the less.  The weather was anything but perfect...cold really....here's a little synopsis of the event....

FEB 14th: Happy Valentines Day...lets leave at night so the kids sleep through it.  It worked for the most part, but we all went a little nutty when we arrived and couldn't check in for and hour or so because we got there too early.  There may or may not have been crying by MUAH....

FEB 15th: CALIFORNIA ADVENTURE DAY...oh, and rain and wind...thanks.  The nice thing about the day is that we did not wait at ALL for rides!!  It was fabulous!!  The only problem was that many of the shows, and some rides were CLOSED...wish I would have known more about "OFF-SEASON"...we had a pretty fun packed day though, but were so frozen that we left by 6PM...and we're Idaho people dang it!!!

Assume the position...

Ya...I'm "Special"...

The only pictures we got with my Mom and Grandma...you can kinda see the side of their heads....SIGH...

Oakley cried when she got off this, but once she found out Carter was going again...of COURSE she loved it and HAD to go again..."Mommy, I'm not scared anymore...I LOVE this ride!!!"  Kids are so funny!!

FEB 16th: DISNEYLAND!!!!!!!!!  The ONE sunny day we had...it actually was fairly pleasant weather!!!!  I have to say that is was such a great experience being able to spend the time with my mom and grandma...what a bonding time!!!  They were such troopers!!!!  I was surprised at all the rides that my kids were big enough for...Blazer could do the Matterhorn...(not that he did it) We got a fair amount of the rides in (again, that were open) and my mom and grandma took Romy to the hotel a little early to warm up, and we ran to get every little ride we could squeeze in.  It wasn't until it was CLOSED that we realized....OH CRAP...we hadn't taken ANY pictures ALL day....!!!!  UGH....!!!!  I was so hoping to see Fantasmic too, and they didn't do that show.  They closed at 8!!!!  I was super bumbed that we didn't have more time...!!!

Yes...we're white and nerdy...

It's a Small World...One of the best....!!!

You gotta click on this picture...I designed these, and even my mom and grandma wore them...They say "We Match Cause We Cool..." (yes, there is a dot dot dot at the end too,,,) cause dang it...WE ARE COOL....!!!!  We actually got a lot of compliments on them...people thought "I" was funny...go figure...

FEB 18th:  BEACH!!!  (no pictures of course...whaaaa!!!!) It was the most stormy day of all.  It was monsoon raining...heavy winds...and it was GREAT...!!  No, we didn't go take a dip in the ocean, but my kids found a TON of seashells, we got to watch surfers, and boats, and of course, we still got massively wet....mostly due to the pouring rain that was flying in heavy drips sideways...!! 

FEB 19th:  DRIVE HOME....I don't want to talk about it...

FEB 20th: STILL DRIVING HOME.....I REALLY don't want to talk about it now....lets just say that blizzards, and white out conditions were not expected....nor enjoyed...

BUT...we made it...and have many memories...even if I didn't capture them all!!!

I just want to send out a special thanks to my Mom and Grandma...It was so neat being able to spend the time together...reconnecting and bonding...I sure wish I saw them more...Thank you for all your help...we could NOT have done this without you...!!!  We also could NOT have done it without the help from Brian's parents and my other grandparents...they really helped our kids have such an amazing Christmas present that they'll NEVER forget!!! We hope we can do this again someday...and maybe even take a few more pictures!!!!

Eggggggcellent....

Easter is one of my favorite Holidays...it's so cheerful, colorful,and just reminds me of things "new". This year I decided I was bound and determined to make the girls outfits, and holy crap...I did...I'd post a picture, but I want to do them "professionally" first...so you'll just have to wait...hmmf...

I was looking forward to them wearing their adorable outfits to church until Brian mangled up his ankle playing basketball. He was shooting and came down on it wrong....ALL wrong...we're still not sure how much damage has been done, and he doesn't want to have x-rays done...whatever...needless to say I didn't go by myself with the five kids...

Anyways, I absolutely LOVE hiding baskets...or finding them...sounds pretty pathetic I know...but even as a teenager, I was excited about it...!! It's fun seeing it through the kids eyes too...just pure genuine excitement.

Once the baskets were all found, the gorging ensued. They all piled into the living room together with their baskets, and just ATE....

Romy didn't know what it was all about...she was just watching the kids at first. Next thing you know she ripped a Reeces egg out of Parker's hand, and the realization hit...YUMMMMMM!!! She then began scavenging the floor for jelly beans, spare chocolate, doughnuts, and finally peeps....the kids were cute...she had her own basket, but they didn't mind that she was all over theirs...by the end, she just laid there like she had just partaken of an entirThanksgiving dinner...meanwhile, I am just hoping and praying she doesn't have some kind of allergy to anything...LOL!!!!

Yes...this is my three-year-old in a rash guard and underpants...you choose your battles people...

I had just enough time to get the hurricane cleaned up, and vacuumed, when Papa and Grandma came over with their Easter goodies for the kids. They hid their Easter bags, and the fun began all over again. We can always count on laughter, yelling, and now farting noises when Papa is here...they thought they'd bought play dough for the kids, when in fact it was flarp....Farting play dough I guess...the kids have been...ahem...farting ever since...it's quite hilarious to be honest...the kids feel so accomplished by making such a nasty sound...and of course the uglier the better...

INTERMISSION.....(insert short nap here)

Finally we had family over for dinner and an Easter egg hunt. It was fun to see the cousins all together and enjoying the holiday....

I have to say that this is such an extreme difference from last year...A year ago Romy was still in the hospital during Easter, and it was so hard on us all.  I left for two hours to run over to the inlaws to see the kids and decorate eggs. Then I hurried back to the hospital for Romy, I remember it was the first time they were going to let me bathe her, and I couldn't miss it...then I went back to the inlaws for two more hours to do Baskets, and see my kiddos.  It was hard being away from the hospital, and it was hard being away from the kids...no matter where I was, I felt torn...not to mention I had medical issues of my own!!  It is so amazing a year later to spend the holiday whole...healthy...complete...and blessed...

Americas (not) Best...Meaning Worst...

So I go into that "first room" where they have you stand on the line and cover your eyes. The tech is going through the routine questions when she asks how long I wear my contacts. I said two months, and a bomb went off in the room...she started at me, going on about how irresponsible I was because they are only approved for a month, and how I run red lights at 2 in the morning, and one of these days it's going to catch up to me, and I'm going blind...because she has had 12 people go blind in December, several in March, and already 2 this month...!!! (I can't believe this isn't on the news...hmmmm) Anyways, I told her that I don't wear them day and night, like they are approved for, and that is why I extend them, and that I've been doing it for years...but apperantly that only made me that much more insane, just because you are doing something for years, doesn't make it RIGHT...(sigh)



I finally turned it back to her and told her that the way she was delivering her information was abrasive and attacking. If it truly is an important matter, then by all means, be aggresive, but not at MY fault...I have been going there for six years, and this is the first anyone has said anything about my two month contact wearing problem...I think I need to go to therapyor some kind of support group for my obsurd habit...(???!!) I mean afterall "I am playing the lottery, and this is NOT one I want to win.." She admitted that she was harsh, but that she just didn't want to see my demise...whatever chick...just let me see the "real" doctor...


OR NOT...

I get in there, and he asks me the same question, as if he already knew what was going on, and then told me that he'd have to give me the "speech". I assured him that I had the speech, and that she was very thorough...lol...He went on to say that she has to be the bad cop for him, cause he's a big dude, and he would scare people off...I told him I was scared anyways...

After that he asked if I wanted to just keep my prescription...I was thinking HUH??? Arent YOU the doctor??? He said that based on the first exam I could read the letters on the wall fine, so why don't I just keep my prescription. Well, why don't I just pay a real doctor, who will actually DO the exam...WOW...I told him that I had been using a different prescription on my eye because I tore a lense, and that it was slightly stronger...he looked at my eyes for maybe five minutes, and then put me back in my old prescription...

Whatever...

So that is my FUN hour and a half long adventure at Americas Best....we will never go there again...cept to get my money back for the contacts I ordered...

Put your Best Butt Forward...

 I don't know if it's just my kids, or if this is a normal thing, but they seem to sleep with their little bums in the air, and personally, it's my favorite.  I think I have pictures of almost everyone of my kids sleeping this way.... 

Here's the most recent kids we caught doing it!!

Romy Lin

Blazer...

He actually slept there for at LEAST an hour...!!  Nursery is rough on a kid!!!

And then there's the random "fell asleep while I was playing" pictures that we all love...sweet girl...!!!

Gotta love kids...they make my day!!!!!!!!!