Tuesday, September 15, 2015

Time to catch up~

Summer is over as far as school is concerned and I haven't put any pictures up.  Today is a beautiful, rainy day and a perfect time to add some pics!

Let me start with pictures of My Wee.  This little girl has spunk and style.  I have been saving pictures of her until I had enough to put on here, and she does not disappoint!  She loves to mix and match her clothes and add layers upon layers.  And to add to the "look"  is her attitude!  She is either the happiest little stinker you've ever seen or a monster!!  





 OOPS!  Her chocolate cake she was making in the  sandbox exploded!  But it doesn't distract from the style.





Every summer the firemen in our area come and flush the hydrant by our house, and this day we happened to see them just in time to play in the water.  She followed these guys to the end of the circle and probably would have kept going with them if I hadn't stopped her! Fun summer days playing in the gutter!(Yes, I joined in with her!!)

 This is such a cute picture I couldn't NOT put it on here. My Vaeh;  I used to babysit her, but we have continued to love each other forever!  I call her my 9th grandchild!And I would even take her parents as my kids! (Just watch yourself, Jay! I'm strict!!)

Another pic I had to put up.  One of my best friends who also happens to be my sister-in-law.  We took a night off from mommy-hood and went go-cart racing!!  Yes we did!!  My daughter-in-law came, too but she is camera shy....
...unless she's dressed like a minion. Then she's ok to be involved!

Al got new glasses!!  He picked these out because he looks like his best friend Paul.  (Paul in our neighbor who is an adult with adult children, but is always sweet with Al!)

A lot of church events;  this was a service project the girls made for Baylee.  These girls have a heart of gold and really enjoyed making this;  they were so particular!  They wanted it perfect for her!!

Youth Conference;  we went downtown to Temple Square and was involved with other wards in many activities;  a scavenger hunt,  lunch at The Lion House, a movie, a special speaker, a dinner at The Joseph Smith Memorial Building and more!  We have a small group compared to most in the area!!

Beautiful Salt Lake temple!!

My faithful Young Women and a few leaders!

The first morning we had breakfast made by two of our Priesthood brethren and then headed to The Salt Lake cemetery.  Fascinating!!!  This is a picture of us in front of The Christmas Box Angel.

One of the activities we did was genealogy work.  After finding out what your ancestry was, you got to paste your face onto what your ancestors may have worn.  Yes, this is Alex as a Swedish man.  Kinda scare, funny and lovable all in one!!

YW Girl's Camp is another summer tradition!  This was the first year in a lot of years that I wasn't the camp director (the one in charge!)  and I thoroughly enjoyed myself.  The girls even brought me breakfast in bed!  (My bed being the back of my van because I snore too loudly to sleep with anyone else.  Yes, sad but true)

This is Bobert.  No that's not a typo.  He has been called that by the young women for at least 15 years!  He is a camp guru and we love having him come up with us.  Yes, he has lipstick on his face;  that's from a game called cheeky-weeky.  We couldn't go on a snipe hunt, which is usually our traditional yearly game, because we only had one newbie and someone spilled the beans!!  

Our awesome Stake Camp Director!  Yes, she's wearing a jacket and using an umbrella in July.


And this picture, though not the best of everyone, is where we hung out one day;  our trailer with all our camping equipment.  It was too cold and too wet to be outside!!  We still had a great time and the girls were good sports and great helpers!


Something we did this summer - that we haven't done for at least 4 years - is we finally went boating!!  It was so awesome to see this view in my side mirror!!  Our boat is a classic!  Bought in the 70's by George's uncle, then we bought it in the 80's and boating has become the BEST summer tradition that we have missed.  Unfortunately, just like everything else, getting older sucks and the boat had old man issues.  It would putt-putt-putt like an old man walking up the stairs instead of going full out fast!!  Our friend Jay helped George work on it at the end of last summer and we finally got it out on water!  Once.  But it was worth it!!


George LOVES this boat!!!  And he sure looks good in it!!

My 2 favorite men doing one of our favorite things!!


Did I mention getting older sucks??!?  He did great, but it took him a while to get up on the ski and then a while to recuperate!!

The weather was perfect and the water was glass, but the smoke in the air from the California fires made it hard to distinguish water from sky.

Our boat's wake is awesome!!  And it ran amazingly great the whole day!!  No old man issues for the boat on this day!

This isn't a very good picture because he looks so uncomfortable, but this is Alex's favorite place in the boat.  It's inside the bow of the boat;  he plays with his guys and "paints" the carpet on the roof.  He loves to take paint brushes and brush material that shows the path of the brush and that happens to be what's in the boat bow. It's quite a big area and perfect for newborns and Al!!


But Alex did try on some skis!  It was exhausting for him just putting them on but he tried!!  It is really difficult for him to hold the skis together, but we will keep trying!

The end of our day;  not one we wanted.  Waiting our turn to load the boat - so we were just motoring around the area - and hit a sandbar.  Yup.  Stopped.  Cold.   For the second time in our boat owning years we had to be towed in by a jet ski.  This time we just needed a tug while we pushed off of the sandbar, but I'm afraid George questioned his masculinity after having a lowly jet ski tow his manly boat!!!

Some random summer fun....

CUTE!!

Not so cute!!  But there is a great story behind it;  M was telling me about her upcoming 6th birthday party for her friends.  Lou was invited to do hair and nails, TJ was invited to do makeup, but I wasn't invited!  So I asked what I could do.  My daughter-in-law - who knows better - said, "You can dress like a cow and dance."  So I did.  She swears she didn't say 'dress like a cow', but she did.  I'm right.  The funny part was my children's reactions.  Everyone else laughed hilariously at this cow's version of Whip-Nae Nae, while Colby acted like it was an everyday occurrence, Lou just rolled her eyes and TJ wouldn't acknowledge my presence.  Huh.  Wonder what that all means?

Speaking of embarrassing moments...  thank goodness no pictures!!! (That I know about!)
This picture of George and Al is during the Butlerville Days 24th of July Parade.  We got to ride on the cemetery's golf carts and throw candy to the parade goers.  Kind of a way to advertise and show that cemeteries aren't just for Halloween.  Well, I was standing on the back of one of the golf carts (it wasn't even George's) and after throwing some candy I felt something around my feet.  I thought, "Who threw something back at me?",  looked down and my skirt was down around my ankles!  No kidding!  And since I was on the back of a golf cart I couldn't bend down graciously and pull it up.  Oh, no.  I had to full on bend OVER sticking my butt out then pulling it up.  I looked around and noticed some poor little 5 or 6 year old boy tapping his dad's legs saying, "Dad.  Dad!  Dad!!"  and I just looked at him and said, "I know, right!?!"

If you do find a picture, please destroy it!!!


Maughan family reunion 2015



Al did a lot of go-cart racing.  He's actually really good!  The first time he hit every corner there was during every lap!  But he has improved a ton, and the employees know him by name and treat him really well!!

And George and I got to go see Journey at the Stadium of Fire!!  Oh I love that group - but I love this guy even more.  Couldn't have been a better day!!  

So, that's part of our summer.  And as much fun as it was, I can't wait for Fall!


Monday, August 3, 2015

FAMILIES ARE FOREVER

I belong to The Church of Jesus Christ of Latter-Day Saints (aka LDS or Mormon).  I have the opportunity to work with the young women of our unit (called a ward) from ages 12 - 18.  And no matter how hard my calling is, I love the girls I work with and the other leaders!!  A-maz-ing!!!!

This past week we got to have a Youth Conference with the young men in our ward.  This is basically a family reunion with the youth and leaders in our ward and each year we get to choose a different activity.  This year we went to Temple Square and attended some classes and tours that were absolutely wonderful.  The best part about it was the spirit that you feel so deeply while on these sacred grounds.  There is a feeling of peace, tranquility, love and joy that just permeates the area.

I will write more later with more details, but I had to share these pictures for Alex's birth family to enjoy - since we got a kick out of it!

One of the things we got to do was work in the Genealogical Library.  It was fascinating!!!  I thought they would sit us in front of a computer and say, "Ok.  Figure out who your great-grandpa was!"

Yippee!

Not that knowing who my relatives are is bad, but I always figured the work would be boring.  Far from it!  First they had the kids type in their name and take a selfie on an ipad.  Then they were able to connect the ipad to different areas where we were able to get so much information about our genealogy that it was just incredible.

For instance -

Now remember, this is Alex's genealogical history according to the Maughan family name.  How incredible is this?!?  And this is already IN the system.  We just had to access it.  

Another spot Alex enjoyed the most made it possible to add a picture of your face to an image depicting the different countries.  He thought this was hilarious because he would pull some weird faces and it would attach them to the image.  I picked my favorites to show as an example.
This is Alex as a man from Switzerland.  

And here he is as a Native American.

Handsome dude, huh?

So - Daddy Ernie and Mommy Dana - I REALLY want specific names and dates of your parents and grandparents with their birth date and death date!!!!  Please!?!?  It would be fascinating and I think it would be something important Alex should know.

Enjoy the pics and I will add more info and pics later about the whole Youth Conference.

Thursday, July 2, 2015

I am officially pissed!

Pissed is such a disgusting, harsh word, but I am disgusted and need to harshly emphasize how angry I am!!

Let me start by apologizing to anyone who may be offended by my opinion.  Hopefully you know me well enough to understand my feelings are warranted and that venting on this blog will help me work towards forgiving the person I am mad at.

This person happens to be one of Alex's many doctors;  he is someone we should trust and I don't.  This mistrust goes back to when Al was 5 years old!  I didn't worry about replacing him 13 years ago because Alex didn't need to see this doctor often - twice in 15 years - and when we went back recently I figured everyone has bad days and  I needed to give him a second chance.

***SPOILER ALERT***  Do not read any further if you don't want to hear details of my opinion of a certain ENT we will call Dr. M.

When Alex was 5 he had a hole in his eardrum.  It never closed up after the tubes fell out of his ear.  His first ENT, whom I loved, was watching it carefully for over 2 years, but he didn't take Alex's insurance anymore so we ended up going to Dr. M.  Dr. M IMMEDIATELY suggested surgery.  Insisted is more like it;  he used the scare tactic of  an infection getting into Alex's lymph nodes which are so close to the ear, and if that happened Al could die.  Yup.  That's how he addressed it.

Surgery a few weeks later.  They took a piece of muscle from another part of his ear and patched the hole with it.  What Dr. M failed to mention is they would need to make a C-shaped incision around the back of his ear so they could flop his ear and the skin over to work on the inside.  Now, you may be thinking, "But how did you think they were going to do the surgery?"  Well, having had 2 kids get multiple tubes put in their ear, I thought this surgery would be similar.  I thought they would go through the ear canal, especially since he said it was a "simple surgery" and would be a bit longer than putting tubes in ears, but not by much.  That was all the explanation I got.

Recovery room;  Alex has a huge mound of gauze on his ear with an ace bandage holding it in place by being wrapped around his head.  He looked like a freakin' war victim.  We were stunned!  And to top it off, it didn't help his hearing any, which was a hope.

Thirteen years later; the present time.  As I have reported before, Alex's oxygen sats have averaged in the high 80's for more than a year now.  (Anything below 90 causes concern to doctors.)  There was no clear explanation for why this was happening so Alex's pulmonologist (Dr. P) suggested we go to an ENT because they would know what tests to run to see where the problem could be, if the problem lied in the neck / facial area.  So off to Dr. M we go.  After a quick 5 minute appointment, we leave with orders for a CT, MRI and swallow study.  I was truly excited for this so we could see what could possibly be going on to cause low oxygen sats.  The swallow study was fascinating.  I got to watch a video of Alex's skeleton swallowing different degrees of thickness of fluids!  The MRI and CT were done a different day because it had to be done under anesthesia.  Two days after these tests I got a call from Dr. M with the results;  Alex needs a tongue reduction surgery.  They need to remove 1/3 of his tongue because as he sleeps his tongue falls back into his airway and blocks it.  He said it was a very "clear indication for tongue reduction."  When I asked, "But why are his sats low during the day?  That was the main reason for these tests!"  He replied there is no indication as to why his sats are low, other than his recent rapid weight gain (caused from a medication he takes for anger issues.)

Not. Comfortable. With. That!!  I mean how barbaric can we get?  Are we living in the 1500's?  I talked to multiple Speech Language Pathologists who had never even heard of the surgery being done except in cases of tongue cancer, and to another ENT who said we should go to the cardiologist and see how his heart is doing.  If his heart is staying stable, and if we could get him to wear his CPAP he wouldn't do such a drastic surgery.

We took Alex to a behavior specialist that deals with getting kids to wear their CPAP, and he now wears his CPAP all night long with no problems.  Check.  Saw the cardiologist who not only says his heart is doing great, but as we watched the CT and MRI on his computer (the first time for me) he asked what the ENT's explanation of Alex's trachea being squished was.

HUH?

A normal trachea is circular in shape, with a size of 15 (mm?).  Alex's is hot dog shaped with a size of 5 (mm?).

Called Dr. P - the pulmonologist  - and scheduled an appointment.  Now let me just mention here that in my job I talk to a lot of parents about the different doctors out there, and when we discuss Dr. P I let them know that she can be a bit overwhelming and sometimes seems forceful when it comes to  children with sleep apnea (which I am a firm believer that most kids with Down Syndrome have) wearing their CPAP.

So, the visit with Dr. P today;  lung disease caused by silent aspiration over and over.  His trachea is VERY small and there are other anomalies in the structure of his bronchial area and ALL of this would explain his low oxygen sats during the day.  She would NOT recommend the tongue reduction surgery for Alex because he has so many other 'obstructions' that fixing one (the tongue) wouldn't help any of the other problems.  Actually, nothing will help the other problems.  We could do major surgery to see if his trachea is being squished by something or it's just misshapen.  And if it is being squished by his aorta we could do bypass surgery.  But that surgery would need to be done every 10 years or so.  And then we still would have the other disfigurations in his broncial area that would cause obstructions.   End result;  we could thicken fluids for Alex so he doesn't silent aspirate anymore to cause more lung disease and monitor his oxygen to make sure it doesn't go lower than his average, and continue with the CPAP,

I'm sure I looked surprised as we were discussing this.  This was all news to me - except for the smaller trachea, which the cardiologist wasn't even sure he was reading the images correctly because it's not his specialty.  I finally told Dr. P that no one had discussed this with me.  She mentioned it is all in the notes that I would have gotten from Dr. M.

HUH?

Nope.  No notes.  No mention of the several reasons for Alex's low oxygen during waking time.  No explanation of the swallow study results.  BUT in the notes that Dr. P was reading from - and to which I should have had a copy of - Dr. M wrote that it was "discussed with mom" about oxygen concerns being caused by malformations, and the suggestion to thicken Alex's fluids.

OOOOOOO!!!! I'm seething!  My child is not yours to butcher, just to get you in the medical publications.  My child has many, many health and emotional issues and let's discuss EVERYTHING that pertains to his well being!  Let's discuss SOMETHING that will benefit my son.  Not you!

In all these years, and all these doctors that I have taken Alex to, this is only the 2nd one I won't ever return to.  Only the 2nd one I do not trust to give me the information I need.  (The first doc was an arthritis specialist who told me that Alex needed to buck up and I needed to let him grow up because there was nothing wrong with his knee that would cause him the agony he was in and not able to walk for 6 weeks.  That doc ended up being called by an orthopedic surgeon at the 6 week mark when it was discovered in a hip xray that his hip was completely out of it's socket.  The orthopedic chewed him out because apparently it's common knowledge that if a person has knee pain, you should always check the hips as well as the knees.  The hip pain radiates to the knee.  And I have to give this arthritis specialist kudos;  he came to Alex's hospital room everyday he was in the hospital to apologize, and to let me have my chance to chew him out.  Because of this incident, this specialist said he realized he needs to listen to the parent's concerns more and judge less.  Unfortunately Alex now will have a lifetime of hip troubles because of this doctor.)  I say this to show I am not one of those vengeful people who look for something to be wrong.  I feel I am pretty optimistic and can work with many types of personalities and people.

BUT IF YOU MESS WITH ANY OF MY LOVED ONES - LOOK OUT!  I will not hesitate to let anyone who asks know what kind of jerk you are.  And I may even blog about you!!

Take that!

Wednesday, July 1, 2015

Next big step

Now that Al is 18 he needed to get a picture ID.  It was so weird walking into the DMV with him!  Seeing all these other teens there to get their license - he felt like he was just where he needed to be.  I didn't tell  him the difference between their cards! And he has been told he can't get his license until he's as tall as his brothers.  (Not gonna happen!)

There was hardly a wait at all!  (We went to the Draper location instead of West Valley.  Will definitely go there from now on!)  He sat, I took his picture, they called his number.  Awesome!  But I still had to post a picture of him looking bored in the DMV waiting room.  It wouldn't be complete without it!



This gentleman treated Al with respect an adult deserves.  (Even when Al whined because he only got a temporary card!)

He didn't need his eyes tested for the ID card, but he checked it out anyway.

And here he is!  The proud owner of his first picture ID card!!  

Thursday, June 25, 2015

So THIS happened

I know.  I know.  It's been a while.  After a while it seems overwhelming because I have so much I want to put on here, so I'm just gonna do a quick update with pictures.

Yup.  THIS happened!
Grand baby #8 (granddaughter #5) arrived safe and sound!  We will call her D.  She is a very alert little stinker who is starting to smile and thinking really hard about laughing.  She is as beautiful as all the others, and has her aunt's Marty Feldman eyes.


 I can't believe THIS happened...

N's dad gave Mike and I his frequent travel points and we went to Florida!!  I went there with Cali after she graduated and fell in love with the beach there and have always wanted to take Mike.  He is a beach fanatic!!  And I knew he would love this one!





I found a few creatures while trekking around the beach.  The bluish, puffy things are air-filled sacs.  When we got back to the hotel I googled them to find out what they were and discovered they are Man of War Jellyfish - one of the top 10 poisonous to man!!  As you can see, I held them in my hands.  And since I'm typing this post WITH those same 2 hands, it's fair to say they weren't poisonous anymore.  But they are still REALLY cool!!


Of course we dined at Bubba Gumps!


This was Mike out about waist deep.  Now the funny part of this story is the whole reason I wanted to take him to Florida is because there were no waves at the beach.  Just aqua-blue water and white sand as far as the eye can see.  We just happened to catch it while tropical storms were passing through.  Didn't matter, though.  We still had the best time ever!!




I couldn't resist a corny pic with THIS guy!


I cried when THIS happened!

This sweet, young lady with Al was a peer tutor in his class, and also belonged to the dance team for the school.  She noticed how amazing the boys in his class were at dancing to Wii Just Dance videos on YouTube, and suggested the boys teach the dance to the dance team, and then perform it at their end of year concert together.  AMAZING!  Yes, the boys rocked it!  And, yes, Al was the best!  (I might be a bit prejudiced...)  I didn't cry until the end of the dance when you could see how excited these boys were that they had accomplished such a feat, and the reaction of the audience blew me away.  It makes me teary just thinking of it.  They cheered so loud and did a standing ovation that lasted at least 3 minutes!


THIS sorta happened...

Prom 2015, Baby!!  A chilly, rainy pic in front of the yellow limo.

Stud muffins!

When I say this sorta happened, it's because we left early.  They held Prom this year up at the U of U football stadium's press box;  a long, skinny room.  The view was amazing, but the area was just too cramped and loud for Alex to enjoy.  He hasn't minded the loud music before at Prom, so I think it was mostly the small area.  So he hung out in the hallway, which is where I took this picture.

They had the area blocked off with this view, but I snuck in and took a great 50 yard line picture!


Both grateful and sad that THIS happened.
Alisa Johnson Linton Passed away after fighting melanoma for 8 years.  Her family lives across the street from us and even though Alisa had graduated from high school when we moved in, we still knew and loved her like the rest of the family.  Glad she's not in pain anymore, glad I have a testimony of where she is now, but sad for her family.


This was taken just a few weeks before she died.  It was at her youngest sister's wedding reception.  She wanted a picture with my dad because while she was a young woman he was the bishop of the ward.  


My neighbors whom I love like family.

Alisa's family; Ginger, husband Josh and the 3 boys.  They handled this day with honor and respect, and still amaze people with their generosity and kindness to others in need.

While driving to the cemetery - first of all, Ginger was allowed in the hearse and had her head sticking out the window, which I thought was VERY appropriate since Alisa loved her - the whole elementary school student body stood respectfully in front of the school as the procession went by. 

So sweet. So tender.  Yes, I bawled like a baby!!

While I'm being morbid and talking death, Cali and I 'celebrated' "SUCK A DUCK, MY DAUGHTER DIED" day.  It's an official holiday;  see, it's on my calendar!

3 years ago Cali suffered an amniotic fluid embolism and survived.  Her story has touched hundreds of people and she is doing fantastic!  A little memory loss, but not enough to hinder her life.
 
First we went to the store to buy goodies for us and the ducks at the lake.

(CR, Al and O)

And then we went to the lake and fed the ducks on "SUCK A DUCK" day.  The day after this is when Quincy was taken to spare Cali's life, so we celebrate his birthday on that day.  He would be 3 years old!!  Wow.  
Obviously this isn't much of a celebration, but it's more of a chance to help Cali handle a difficult time.  And a time for me to thank my Father in Heaven for all the miracles in my life.


Cali and me

And CR knew Nanny needed a hug.  Isn't this picture just too cute?!?


So happy THIS happened!!
If you don't recognize this good-looking man that Al is hugging, this is his birth dad, Ernie.  They came into town for 5 days and we had a blast!!


We went to see snakes, lizards and alligators...


... had fun at Seven Peaks...


...enjoyed the sun and water at the lake by Cali's house...
...and one day when the boys went paint balling, us ladies got a pedicure!

This is Alex's youngest sister SH.  Whenever she was at our house she grabbed Gracie's collar and walked her all over the place!!  Both of them loved it!

The reason they were in town was because
THIS happened!!

Graduated (with honors!) with the class of 2015

Al really likes this pic because he looks taller than his teacher, Heather!  

So, so proud of Alex.  He is such a good kid and even when he's not, you can tell he's trying his darndest to be good!

THIS better happen again!!

Two of my cousins and I got together and drove to Fairview to put flowers on our grandma's and aunt's graves.  Meet Wendy and Kristen.  Growing up Wendy was one of my best friends;  I had a lot of sleepovers with her and spent a lot of time at her house.  Kristen is a few years older than us, but I always looked up to her.  She was the cousin that always had fun stuff for us all to do.  They are hilarious and we had a great time.  Next year we are hoping to at least double our number in cousins!


We never knew Aunt Joan.  She died as a little girl.  Grandma had a big bucket of boiling water on the floor to use for mopping and Joan fell into it.  

We had fun walking around and trying to guess which Vance or Mower we were actually related to.  And some of the headstones were so old!  And interesting.  So many children were buried there.  Some families had 5 or 6 children all lined up side by side as they were stillborn.  

Thanks Wendy and Kristen for a great time!!  And thanks to all my family who came before me.  Your sacrifices have not been dismissed!


THIS just happened the other day.  Al's first real crash on his bike.


We even took him to the ER for this injury because he complained a lot about it and had a hard time moving it.  But it was just a deep bruise.


And obviously not much of an "emergency".


THIS happened in early summer.  I know it's a random pic (I think Al was trying to get a pic of SH walking Gracie) but I have to show off how beautiful my flower bed is in spring!!  It makes me happy!  Unfortunately the snaps die off once it gets too hot and now it looks like I'm trying to grow dried flowers.  Not pretty.


THIS happened 31 years ago this June 30!!
I got to be sealed for time AND all eternity to my best friend EVER!  He loves me.  He gets me.  He likes me.  And he even puts up with all my crap!  Even if it embarrasses him.  

31 years is a long time - but it's not long enough!

(elevator in Florida)

 (second shot in elevator)
 On our way to the Florida beach for the first time.


(hotel room)

(airplane coming home from Florida)

Thanks for being mine, George!!!