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Monday, December 3, 2012

A phone dump....and choosing better...

I read recently the you really just have to choose if you're going to be bitter or better   ........sometimes I foget that I choose to be better and enjoy each day.  It's the human condition I suppose.  ......it'd be nice to say each day I wake up and do all the right things but more often than not, I get up go to the bathroom, make my coffee and sit around until one of my boys wakes up.  ......and at that point, I often just let my day happen to me rather than making choices of how my day should go.    .......I don't think I'm the only one that does this either.   .......alot of us forget that every day is a new opportunity to make ourselves a little better....and in the process, influence our families and others around us to choose better as well.
 
Anywho.......I'm so grateful for the good things in my life......plus, it was time to throw some pics on here for friends and family.
 
 
Thanksgiving morning....Sawyer helping out.

Outfits my mom got for these little guys for Thanksgiving day...they were adorable.  ......this was at my friend Jeannie's house...it's our tradition to be there pretty much every Thanksgiving.  We're thankful to have friends we love as much as family.

Connor hanging out with his dad and watching some good ole football.

Part of my 'smash' journal......I love this guy still.

The tree going up.  ........I used to be a die hard real tree kinda girl but really, how simple and beautiful are these trees nowadays.

Connor before bed...he has his leads on and is chewing on something like a phone charger (i know...parent of the year..huh?!)....this outfit was found in a box of Ireland's things.  It's amazing it fit and even though there was a chord of saddness, how cool that she has a hand me down for Connor.

Sawyer looooooooves his cars.

This g-tube baby has noooooo oral aversion whatsoever!

Oh lovely teen....

Grateful I can actually do this.

and adding weights is hard but needed.  I feel healthier every time I do this.

This little one wakes with the rosiest cheeks every single morning.

Tristan was soooo proud to gift us with some twinkies........meanwhile...I swear they don't taste anything like they did when I was little.

Sawyer waking up and running around with Ellie.

To wait for breakfast (or anything)....a little angry birds is nice.

This mornings greetings!  Loving those two front teeth.

Poor Lucky-dog...he's Sawyer's absolute favorite toy.
 
 
 
THAT'S IT!....gotta really get ready for Christmas.  I have got most family done except everyone in my own house...I know, horrible.....but how fun to get going on this.  :D

Monday, November 26, 2012

some series of events...or midnight ramblings

There is a moment in one of the Harry Potter movies where Harry just kissed Cho for the first time and he's told his friends she started crying afterwards.  Ron is getting a talking to from Hermione and he says....no way can one person feel all that...their head would explode.   .........yeah, my mind is like that.  It doesn't explode .......but at 2am......I'm up and my mind is racing.  ..........right now.........I should lace up and go to the gym but this morning, I feel defiant.  Screw the gym.  I am doing this instead.   ...........sometimes, if I can't sleep and need to escape, I get on the computer and usually hit a favorite blog and then I start going fom link to link to link and end up in a blog that I sort of visit.  Sometimes it's crafty sewing, other times it's card creations, sometimes it's beautiful nature photography, other times it's decorating or fabulous family moments...sometimes it's research on things that are on my mind, in that moment........it's just sporadic ramblings of the world and it's a fabulous free mind escape.  ..........lately, I find myself really wanting to get things out of me........I believe it is the holidays that do this to me.  It's a time of thankfulness......a time of giving.  The new  year will come and we'll take hard looks at ourselves and try to choose a path that's different than the previous year....holidays can be a time of reflection...figuring out what's important 
........I've been blessed with some amazing people in my life that tell me I'm  a good writer....or I've had alot of things happen to me and always came out ahead.......others tell me I have something to say that could teach others.  I'm told that I come out shining.......that I'm a good example......I'm a good person.  I've been through so much and come out ahead and better.  This is what I'm told.     ...............then I happen to fall on someone's writing that leaves me speechless and drenched in tears. ..........I think, my God, I wish I could write like that.  ........So, being me......I turn to a book .........I turn to inspiration.  ...........I realize, I am this person.  I've had this happen.  That book isn't telling me things I didn't know.......That inspiration is starting to tick me off.  No fear.  Risk.  Inciting events.  Create change.  Create moments.  Remember.  Make things memorable by giving the moment an emotional punch. ..................WTF.........WTH.............are you freaking kidding me.  ..........

.......I stop it all and for the first time in a really long time just cry because I've been through too much.  I don't do this very often because as Ron so lovingly put it........if you are feeling that much, surely your head will explode.  ........I haven't exploded but sometimes I do stop and feel sorry for myself.  .......It usually doesn't last long but it happens.  Sometimes I think I should call the doctor and get some meds.  .........I've never taken anything mental meds wise longer than about two days.......Once I snap out of my mini depression, I usually think I'm behaving normal for someone who's been through what I have.........and then sometimes, I wonder if I really should be taking something.  .......Do other people have these little mini depressions hit them like this?  Do other people stay up because they worry they're not eeking out their very best life for them and their family?  Do other people dream of  philosophy in their sleep?  Do other people have constant conversations with God or the universe at large and wonder what does it all mean, etc.?

Being this constant thinker has it's rewards and it's disadvantages to be sure.  ......I often think the simplest of people have the best lives.........but then, I've been cursed (maybe blessed) to have simple people in my life that spute utter ridiculousness out of their mouths and then I'm reminded ...no......ignorance is not beautiful......it's just dumb.....simple.....usually beyond thoughtless.  ..........and I'm not speaking of mentally impaired here.......just the people who've chosen to live in bubbles.

When Connor had his genetics appointment we were told his analysis showed that he was a "normal boy".  He, therefore, simply had the unfortunate outcome of a series of events that happened to him in the womb.    .......a series of events.    ........not even born and his life gave him a series of events with the outcome of a life of pain and struggle.  ...........and yet, he's not yet 8 months old and rarely is seen without a smile or simply enjoying taking in everything around him.  For all that has happened thus far in his little life......he's been my absolute easiest baby.  Dramatic things have happened to him.......but he........he's not drama.  He's easy going.  He's beautiful and cute.  He likes his food.  He loves his brothers and seems surprised and grateful for any attention from them.

I think of Ireland and sometimes get sad......sometimes just wonder about heaven....life and death......where do we go?  Is she old or young or a blade of grass or having conversations with God or part of the air I breathe?  Is she happy or missing me or watching me or holding my papa's hand and running around trees with other little angels?  Does she have a sister named Iris Gale that I dreamed of before I miscarried? ....Does she have wings or is she like the movie...what dreams may come.......and has she taken some adult form to guide others to their destination?.........was her purpose in life for me?  was it for her?  was it for everyone else?.........why did it have to be such a short time?  why couldn't she have stayed with me?  grew up with her brothers?  ...........why did she have to go?  .........did she go because we decided ?  or did she go because .................                                             it sucks.  it's not fair.

I love my mom.  .......I wonder if she was predestined to be my mom.  I wasn't born of her womb.  .........there is another woman in this world that may think she's my mom.  ........I haven't explored these feelings too much because I love my mom......I love who I call mom even when she drives me nuts or I feel like I'm dissappointing or not living up to her desires.  ...........my mom loves me.    ..........I wonder if the woman who thinks or doesn't think she's my mom thinks of me.  ..........she must.  .........I know the story of her briefly and can imagine she thinks of me alot. ......it's weird because I don't think of the man who spawned me too much.  ..........I have a dad.  ..........but there is a man out there that may think he's my dad and I'm his daughter.  .........I wonder about them sometimes.  ..........Mikey found the name of my birthfather once and did a search and we think he passed away but we're not sure.  .........it's the internet age and I searched once or twice but nothing too serious.  .......I did a facebook search and even sent a message to some folks with the same last name...the same geographic area.  ................not one response.               there is a woman with the name I was born with that came from where I was born and now lives in the midwest.  I flat out asked if she'd heard of me.......she hadn't but thought it was a cool coincidence.   ........i was seeking information about Connor's condition once and found a girl's picture that looked like she could have been my twin.  It was erie.  She has a son with Connor's condition.  ..........it gives me goose bumps and makes me a tad uncomfortable.

Something happened once.  I was drunk.  I was young.  I don't remember anything at all but that I woke up and had bled.  My best friend of the time was called.  It was unsettling.  ......I didn't do anything about it.  Absolutely nothing.   

It took me over 8 months to tell a man I loved him.  Our love was intense and things novels try to touch.  ........he broke my heart.  .......and years later, I let him back in.........and he tried to set me on a shelf and I must have changed..........because that time, my heart was ok.  ..........I moved on.

I didn't know my husband would be my husband.  I didn't know how beautiful he truly was when I met him.  ..........I had no idea someone could love me like he loves me.  ........and when I stop and reflect........I'm amazed how much I love him too.

I was told indirectly that my daugther died and my son was born this way because God punishes his children.........yeah........it was said out loud.    and yeah........I've forgiven this ignorance but I will never ever forget it.

I was told that I was raised better and was an embarrassment to my family when I got pregnant with Tristan.   ..........yep, I still have the letter you wrote me.  .........I forgave you too but I'll never forget this either.

I was told by someone, at some point, somewhere that I was beautiful, that I was smart, that I could be anyone and do anything..........I think a few people said this.  I think I read it somewhere.  ...........I believe it.

I've had to get food at a food bank before.  It was defining.  .......I've been on WIC where I had to sign the bottoms of checks to feed my oldest son.  .......at the time, his dad was active duty military and these checks were signed in the commissary (military grocery store),  .......I had food stamps for about six months when my oldest was young.......it embarrassed me and I'd do my best to shop when there would be a minimum amount of people.

My first marriage was short.  We were not really together long at all but we had Tristan together and for that I will always be grateful.  .......our divorce was so dramatic..............and soooooo........not dramatic. ......I think we've always had emotions  for one another and always will.  I think it's appropriate.....  I always wonder what God thinks about all of it too.........the divorce......him and me.......Tristan having to deal with it all.    ..........Mikey...........  Mikey has to deal with it too    .........I suppose we're all luckier than most.  .......atleast, on my side of the great divorce spectrum..........  I want Steve happy too.   .............and I want all of us happy and loved.    .......that's what it's all about. ...right?

...I think my little Soybean saved me.  .......seriously.  His timing was impecabble.  ......I didn't know it at the time.........

God.........I think about him/her alot........religion.......it's bred in me.........I breathe in a spirit that has wounded me........I question everything........EVERYTHING  ......I have gay friends......I love them and do not think they are wrong or wired wrong.....I think God loves them too.  I think murderers are freaking Satan's spawn and I'm not real keen on them saying a prayer and all is forgiven.  ........I have opinions.........I have free will......I have sooooooo much faith and yet I question EVERYTHING....my suffering has supposed purpose......I'm supposedly a Phoenix rising from the ashes........      I believe in the census of Caesar's time just as I believe that there are census' today.........and with that, I believe in HE........but.......BUT......I question........I think........there are things I don't agree with.......and one day, I hope WE get to have a conversation.....


.......life is a series of moments.  I'm pretty sure I read that.  I hear people should create events, create some drama......try to live a life they can remember.  .........I have read that some people look back and really don't remember all that much.  ............I have a horrible memory.  ..........and yet, I do remember all this stuff......yeah, I remember the dramatic stuff.........and weirdly, I have created memories at times because my mom gave me a box that included papers from my adoption caseworker and it was bizarre to read about my birthfamily in an essay fashion and realize that what I thought I remembered and what was fact were two very different things.  ..........Bizzare,     ..........anywho,  it makes me wonder if it's cooler nowadays that people can virtually record their life and moments with camera phones and facebook and such.....will their memories be real or will they just do like I did in the case of my birthfamily "memories" and just create memories that they've embellished?


.................over and out peeps.  .........after saying the word Bizzare.......  I'm done with this mental dumping on a blog.

Sunday, November 25, 2012

Pics and testing update....

I had a call from my friend Lori yesterday (HI!!!!)  ..........she reminded me that others may not have heard about Connor's recent test results.  Sooooooo..........in simple format

Eye testing....this appointment takes awhile because the eyes have to be dilated......also, not a good idea to bring any extra kiddos....the office was packed and once the eyes have been dilated you are sent back out to the waiting room until you're called again (it was about a 45 minute wait).  ..........anywho, Connor's eyes received a "PERFECT" diagnosis from the doc.  This was awesome.  We were worried slightly just because 50% of Pierre Robin babies have Stickler's Syndrome as well.  Most Stickler's babies have some form of near sightedness, degenerative eye disease or glaucoma.  Also, they can have some major joint issues as they get older...along with hearing issues.

Hearing (ABR) test.........this was a major worry because one day Connor can seem fine and the next, we've not been so sure.........same goes with hearing tests he's had thus far in his life...one test  he'll pass, the next he'll fail.  .........the ABR goes past the tiny hairs of the middle ear and gives a much better result............anywho, Connor has fluid issues and this is why he has ear tubes.....He'll have fluid issues for some time so we just have to always watch for signs that go with that...........but other than that, his hearing test went great.  We were a little upset because instead of a general sedation they put Connor down with general anaesthesia.  The reasoning is that he is simply a Pierre Robin baby and they fear breathing issues will arise when it's time to wake him up.  .........I, personally, am not worried about these issues because I believe his jaw distraction opened up his airway big time.  ..........anywho, the results were that he had "normal to learning speech" hearing.  Most of his results were normal with a few in a range where low tones could be an issue.  Basically, this means that in crowds or settings with alot of background noise, he could have some minor issues.  ........because of his fluid issues, he'll need testing every 6 to 12 months.  And unless there is a major concern, his tests can be more of a behavioral setting and simpler hearing tests than the ABR (meaning we don't need to put him to sleep).   ...........so, for all major purposes, these results were amazing.  He's good........we'll continue with speech therapies and learn some basic sign language.

His visit with the craniofacial dr/plastics............his prosthesis is looking great.  We tried to move Connor's surgery date to December in hopes of this bill being on this year's insurance..........but, the doctor felt Connor needs to wait until the January 30th date.  It sucks financially but obviously, we'll make it work so Connor is getting his very best care.   .........apparently the prosthesis is not only there to help Connor with his feeding issues....it's there to try to stretch what little bit of a palate he does have so the doctor can have more skin to use during the repair (umm...not sure if it's skin now that I type this...but he needs more of that pink area on the roof of his mouth).  ........anywho, that was a good visit too.  Quick, painless, another doc saying Connor looks awesome.  :D

Swallow study.....he's still an aspirator so will continue on thick formulas and foods......he'll not get another official swallow study until after his palate surgery.

Basic pediatrician appointment....Connor's weight is going up BIG time...he is over 17 and a half pounds.......he went from not even being on the growth charts to now he's in the 20th percentile range...NICE!  .......he had a flu booster shot and we changed out his g-tube.  (for all I've done for Connor to take care of him, I do not like placing the g-tube though his pediatrician had me do it so she could know I knew what I was doing)......the changing of the tube is pretty simple...remove water from the balloon, pull out old tube.....wipe disgusting contents (sorry Connor...it is sort of gross) off his tummy...place new tube in the hole in his tummy, and then place 5ml of water in the new balloon.  Voila....done.    .........we decided he was the best looking little chunky baby ever and called it a day.....and yes, your baby is awesome too but he/she was not in that room....so, my moment...my baby was cutest    :D

Speech therapy....Connor still uses his haberman bottle and has chewed massive cracks in the tops of his bottles...there is a bit of concern that he is downing the formula too fast but the facts are, he will not take another nipple and for all major purposes, he is doing fine.  He'd probably have more problems if we went out alot and kept him in germy environments but we stick to keeping him home and just a few close friends.  He does get a bit rattle-sounding still so we know Connor well enough to know when to keep him inside or away from too many people.   ..........he has another appointment this week and we'll decide then if it even makes sense to continue his outside speech therapy.  .........he'll continue to have someone from Early Intervention stop by the house once a month to check on his feeding and also he has a separate speech therapist that will start teaching  us the best ways for learning at his age (meaning books and slowly intonation and actual working on words).  .........our speech/learning to speak lady has us simply showing books with babies faces, showing their emotions, ....books with mirrors.....and songs with a bit of signing in the mix....youtube has tons of videos with signing if you want to work with your baby

...........so, Connor is doing great.  .......he has some appointments scattered on the calendar but he has a pretty easy schedule until his palate and tongue tie surgery at the end of January.  Our only major concern until then is just keeping him healthy.  ........we wanted to return some equipment he has on hold at the house because seriously come January we're back to the insurance game.  We are keeping his apnea machine that he is connected to at night until we're comfortable giving it back after his surgery.  There is always concerns of closing the palate and it causing new breathing issues........also, with his tongue being clipped, we need to know that he won't try to roll that back in his airway.     .......we're also going to keep the suction machine until the cold/flu season is gone.  This equipment is ridiculously expensive to keep when it's not used all the time but our pediatrician truly believes Connor has stayed out of the hospital because the minute he starts to get a cold, we have the means to keep his airway open by using this suction machine.  Thinking about it, we agree so will keep it until spring.    .........I'm considering talking to friends after Christmas about either doing a poker tournament or some crafty type fund raising.  The fact is, we qualify for absolutely nothing and we believe it's a good thing but we also don't want to continue running up our credit cards or spending our retirement account (borrowing against TSP for those in the know). .........we'll let ya know when we decide on what we'll do.

........anywho, some pics.












 
 

Saturday, November 24, 2012

Giving...a list to help ya out is here...

....if you want the list of some of my best gifts and skip my mumbo jumbo...just scroll down a bit.....

As we sat out and thought out the gazillion things we were thankful the other day....I felt blessed in a gazillion ways and had tons of sentimental and nostalgic thoughts throughout that day.  ....This morning, as I was doing yet another work out in hopes that eventually my exercise, food choices and mind will come together in a perfect union...I started thinking about giving.  After all, Christmas is on all of our minds now.  ...........Before I put myself out here, I need to post one of my "disclaimers".  I am ok.  Somehow things always and I mean always work out for us.  I have rock solid faith in my God, my family, and the world at large that works in a way that keeps us afloat.  When we need....it never fails to show up.    ............With that, here I go.
My mom asked me recently some gift basket ideas for someone she knew who had a loved one (specifically a little one) that was in the hospital and quite possibly dying.  This person spent most of her time at the hospital and had been caring and loving this little one.....and my mom wanted the right little gifts.   ..........I'm glad she asked.  It's inspired this post even though it was weeks ago that I gave my mom a small list and some thoughts on the subject.
.........now I've had a bit of experience being poor.  I was on food stamps back in the day when my ex and I first separated (and this is in no way a reflection on him...he's a good man...he suffered too and was in a completely different country serving our country).  I lived with a friend for several weeks with Tristan when he was small until I was approved for a small income based apartment.  I lived there for about a year and a half before I decided my son would not get on a school bus living in that spot.  ........seriously, pride has its place.  ..........in that time, I had one specific Christmas memory that has impacted me for a loooooong time.  ....in positive and negative ways.  I literally had $10 to spend on Christmas.  My ex and I happened to separate before Christmas.  Specifically 3 days before I flew from Guam to Utah to live with my friend.  ..........my ex had given me some money and there was a mishap with my ticket and I ended up needing to buy a ticket from California to Utah....to get that ticket, I spent all he gave me except $10.   ............yeah, it left an impression on me how awful that moment was.   .........Well, let's just say Tristan literally had a dollar store Christmas that year.  My friend bought him a Barney doll.  This was the Christmas of 97 so Tristan was only 2.5 so he doesn't remember.  .....Well, I do.  I'll never forget it.  ..........What left the deepest impression?  Tristan was perfectly happy and had a blast that day.  ..........I also remember my friend who also lived in a low income based apartment had a ridiculous amount of gifts for her children.  And I mean ridiculous.  .........Now, I'm going to try not to sound bitter because I seriously am not but I am trying to simply leave a truthful account.    .............because at the time she did not work or have child support, she was on every service imaginable.  She was a good person...hell, she opened her home to me for 3 straight weeks and helped me get on my feet in more ways then I have time to blog about.  ..........anywho, she was a beautiful person but she was young and finding herself...not too unlike me at the time but I can say the way I was raised probably helped me get on my feet faster.   .........with that, her home was ridiculous that Christmas because she had her name in about 3 different giving trees and her church (which she did not attend but she did allow visiting missionaries in her home) had a Christmas explosion under her tree.  She paid about $5 a month in rent and utilities, her food stamps were a ridiculous amount and the gifts for her children barely fit in that room.  .................people can be beautiful and your giving does go somewhere...........but seriously, this was wrong.  ..........as much as I like to blow out my opinion on a gazillion topics, I'm just going to let your mind simmer this truth for awhile on your own.
............next story.........Ireland.  I believe most who will read this already know Ireland's story, so I will not go into a major detail here.  I found out she'd have a 50% chance to live at 20 weeks pregnant in 2009.  Despite us doing all the right things, gazillions of prayers and well wishes, medical intervention from the start.........a 39 week gestational period before finally giving birth that was unheard of..............she was only with us for 11 days and she never came home with us.  .........I can still cry for her.    .............now, people were wonderful.  People were amazing.  ........this was a little before we were into facebook but I blogged so ended up with a ton of support from friends in similar situations.  That support was simple comments or emails and let me tell you.............it meant everything during my pregnancy and during her hospital stay.  ........I want the seed planted that you throwing a dollar in an umbrella at walmart wasn't what I needed then..........I needed a virtual hug.  I needed someone saying you look great.  I needed someone saying despite a gazillion wires, a bloated body, a dire outlook,   that yes, Ireland mattered and she was the most beautiful baby ever.  .............when she passed away, we probably easily got 100 cards.  I needed them.  I don't remember what they all said.  I do remember getting them from strangers and people that had simply heard of us.  I remember weeks later looking at those cards.  Those cards were a big deal.  The emails I received were a big deal.  The food sent and made was needed because I had a hard time doing the daily tasks.  The money helped.  Some went to bills.  It went to a pizza more days than I can count.  It bought the outfit I wore to her memorial service in Utah and it helped pay for tickets for us to go back home and have a service with our family.  I got flowers from a friend that I did not expect them from.....one of those flowers is in her display case that is just outside my bedroom....it was a big deal.  .........we got a case of water.  Seemed weird, ya know....it was awesome.  The basics are a big deal because you don't think right when you lose a child and grieve.
........our family this year has been blessed with Connor.  We had absolutely no clue he'd be born anything but perfect..........and really, besides that first night where we had to come to terms with our own personal tsunami, he is perfect.    ...........we've spent our fair share in a children's hospital and with alot of mail from blue cross blue shield.  ...............we bought a car one week before Connor was born.  We had been on a path of paying off all of our debt since I had decided to be a stay at home mom after Sawyer was born.  .............we had just paid off my car, our credit cards, the four wheelers.  We had sold one four wheeler and had some money in the bank so put that all down on the car to keep the payments lower.   ............yeah...........one week before he was born, we felt pretty proud of ourselves.    ...............and then he was born.  Our beautiful baby was going to need alot of help.  ..........today, Connor is a modern miracle.  He's still got a long way to go.  He has a g tube......but eats ....but aspirates .......and doesn't suck ......but uses a bottle and makes it work for him...he's having a tough time weaning off meds....but the meds are working for him......he still needs surgeries.....we hear therapies will be in his life for a loooooooong time.....we hear dental work will be a nightmare..........on and on and on.  He's awesome.  He's worth some sacrifice.   .........this year people have helped again.  Sometimes we feel like people suck and the world is against us and then the next minute...we feel grateful.  ...........this is a roller coaster ride not made for the weak.     ........Some things we were gifted........3 homemade lasagnas for our freezer......dude....frozen food is perfect from the new mom, the hospitalized, those suffering in any way, the elderly, the lazy, the anybody............PERFECT gift for anyone, anytime.........we got some monetary gifts.......always nice when you have a hospital stay because gas, food, basics are not cheap.  Phone calls.  Whether I answered the phone or just got a message.........it was a big deal.  A homemade blanket for Connor.  This year, maybe because he was the 3rd baby in a row...he only got one, simple blanket and it is a big deal because my family knows someone took the time to sit down from their busy life and do something specifically for him.  ..........don't nit pick your homemade goods, they are loved.


THE LIST of perfect gifts...in Chanda's humble opinion.

1.  Don't write a check to redcross.  Despite your warm and fuzzy feeling and really wanting to help.....ok...if you are truly busy, write the check.....but seriously, you have a neighbor or someone you know that could use that money.

2.  Seriously, 25 cents leftover from your $200 purchase at walmart for the salvation army?!  .....go ahead, put it in the pot.....but then maybe take a $20, put it in an envelope and drop it in the parking lot of your nearest Children's hospital.....maybe put a note to open if you need some help or kindness today.

3.  One of the best moments I saw of my hubby was when we had been giving some help from my parents and we had a little extra money during a particular hospital stay....our friends had visited with their kids and Sawyer but had to go the Children's play area to stay away from where Connor was at that time...well, we noticed the playstation only had one controller (may have been an xbox..who knows?!)......after asking for another controller and hearing there wasn't one........we took the time when we could....went out to buy an expensive butt controller and physically brought it to the Children's play area and gave it to the volunteers there.     ...........let me stress, that we've noticed poor toys at our very expensive Children's hospital.  People donate like crazy and throw toys in boxes and money at telethons and we've had more than one nurse say they don't know where that money goes.   ..........go buy a toy....don't leave it at the front desk.........wash your hands..........make sure you've had your flu shot............go to the 3rd floor of Primary's hospital and walk a toy to the Children's play area (or your local hospital).

4.  Send a thoughtful email or card.  They matter.

5  Don't gripe about Obama or congress or your local representative...........stop typing or insulting and physically do something.  Make a freaking casserole and if you don't know someone suffering, take it to your grandma, your friend, your mama, .........someone.

6.  If someone has died ........don't think that mother is still crying years later and you think she should get over it.  ...........she will never get over it.  Tell her you remember her beautiful loved one.

7.  If you know a mother or father (or anyone() tending a loved one, remember they're having a hard time focusing on anything.....don't give novels or cliches of they'll be fine.  Give them something tangible.    .....don't ask them to call or if they'd like this or need this or please let us know........we can't think in these times....we aren't ourselves and we probably need it so just give it.  Yes, we need you to babysit but don't want to be a burden.  Yes, we could use a meal, but don't want to sound pitiful.  Yes, we are going broke but don't want to seem needy or that we're not handling things ourselves.

8.  If you know someone is not doing well.  They're gaining too much weight, losing too much weight, not taking care of themselves, a teen dressing too provocative, a kid talking in hateful ways.......reserve judgement....let them know they're loved.  Provide a little self esteem, hand out a recipe of you absolute fav healthy food, gift something meaningful, give them a compliment......make them know they are awesome and meant for so much and that when they get through the hard stuff, they will feel amazing knowing they can do anything.

9.  Did I already say gift some food?  Alot of people don't want to give money.........don't if that's your thing.  And don't just make junk food.  Seriously.......if someone is truly in need.....what they need is a meal.  We got some great mexican type casseroles once....probably didn't take forever to make or cost a ton but man..........it was one less thing to have to do during a particularly rough patch.

10.  Your used stuff that's still nice really is a gift for someone that needs it.   .......with a little bit of embarrassment....I posted the need for my growing babies.  And let me tell you........it is embarrassing to put yourself out like that........When you're putting up a fence this year and getting new windows for your house, you feel judged....big time!   Every thing I do and definitely where money is concerned, I can feel a sense of judgement.  It's not necessarily from others either........it's something I do to myself.     ...............anywho..........our house is older and the windows desperately needed replaced..........our fence is basically a gift from my folks because seriously, Sawyer is hard to keep up with and needs to run around.   ..................anywho, back to my embarrassing/swallow your pride moment.    It is beyond hard to ask for help....to say, I don't exactly have everything we need.  ............of course, we could charge up another credit card and get everything our boys need.  We could go borrow, again, from our retirement.    But I knew, I'd give my things away for someone so I flat out asked.    ...........for those who helped us out, and helped others out.....it was a huge burden lifted........thank you..........and keep up your amazing gifting ways.

11.  A man from out of nowhere bought our breakfast one morning.  No idea who he was.  No idea that was going to happen.  ............it was an amazing feeling to know people like that exist.  When we're in that position again, I'm going to do this.    ..........If you can truly afford to do this for someone, some family, do it.  If you're not sure who to do it for......a hint would be any serviceman or woman.........any family with young kids....any older people.......any single parent..........really, anyone....even a rich person may like the feeling and reminder of saints and angels walk among us.

12.  Babysitting for free.  We've been blessed here.  We even had a teenager that we love to pay because she's just that good and sweet refuse our money once.   Wow.    (and seriously Sarah, don't ever do that again...we have older friends that'll do it for free  :D  )

13.  Visit.  We're not exactly the jet setting family anymore.  We don't remember our last real vacation though we've been blessed to have family come out and last thanksgiving we flew back east.    ..........I've had a few friends call and stop by just to hang out.  It's always been awesome.  ........we are in a situation where we have to be germaphobes.  We still are not that crazy type that offers sanitizer when you walk in......but we sure like to think everyone has the common sense to not come over sick and to wash up if you've been out and about before stopping by.    ............with this visit.........I'd also like to add that we had some family of ours gift their time share to my parents so they didn't have an added expense when they came to visit us.  That was beyond thoughtful and a huge gift...not only to my parents but to us.

14.   ...................make your giving count.  Be thoughtful not just quick. 


..........I'm pretty sure anyone can leave comments so please do if you have some great ideas to add.  This was just a quick blog post that I wanted to get out there and get people thinking about


Tuesday, November 13, 2012

testing....

I took apart an email to my mom to pass this week on,,,,as we learn things, and there is time....we will update our friends and family.  Honestly....I've got good feelings about everything.

We'll be starting our day headed to Primary Children's to see Dr. Drees at 9 sharp. He'll be tested for several degenerative eye poblems with a focus on his retinas. 50% of Pierre Robin babies have Sticklers syndrome ......and upwards of 90+% (of the Sticklers babies) have some sort of major eye issue. For some reason, we're just not worried about this though .......it isn't something anyone can just look at him and know. If we learn something, you'll be the first to know.
From there, we'll see Dr. Siddiqi. He'll make sure Connor's prosthesis is clean and staying put. We'll also discuss a time for his next surgery which will include a palate repair and the clipping of underneath his tongue. I believe his palate repair will take 2 surgeries since he has no hard or soft palate. Part of us hopes this can be done before the new year because we have several pieces of equipment that we're only comfortable returning after he's been home awhile and we know he's handled these surgeries well.
Tomorrow, we'll be headed back to Primary's for Connor's sedated ABR hearing test. Sawyer will stay with a friend. ...his test will be under a deep conscious sedation and he'll be monitored the entire time. He'll have sensors on his forehead and behind his ears.....he'll have small earphones in the ear canals....when the sound goes in his ear, it'll be converted in the inner ear to a small electrical signal that travels along the brain stem auditory nerve pathways. The electrodes will pick up this activity in response to the varying loudness of sound. This should take about 3 to 4 hours and we'll go home once he's had a bottle and kept it down (within reason).
The next day he has speech therapy where we'll need to discuss his eating habits and another needed swallow study. Connor really wants food but there is no doubt about his beyond normal reflux and his aspiration. If a certain baby food is thin, I have to mix cereal with it so he can actually enjoy his meal. .....I'm hoping if these next big appointments go well, we can figure out why he aspirates and fix this because he's starting to really want our food as well. I'd love to let him gnaw on a baby biscuit but of course he has teeth now and we don't want anything to break and him swallow that wrong.
Friday our deaf and blind lady will come to discuss this week's findings and we'll decide the different therapies Connor will need.
Monday we'll visit the pediatrician to relay everything new and also officially change out Connor's g tube for another. His skin has also been irritated around the site, so we'll try to get a handle on that.
Tuesday will be the early development speech guy that comes to our house. He'll follow up with our other speech lady to make his suggestions from what he sees and will also evaluate Connor again for his physical abilities. .....he can almost sit up now. Almost...so we still feel good about this but will listen to what he recommends.
.....from there, we will prepare and enjoy our Thanksgiving with brand new windows installed that Monday and possibly Tuesday. I'll take a bath in my newly painted (buxton blue) bathroom and thank God for my loving and wanted family.....and hopefully with the windows, a much warmer home. 

Some pics..