Count down to Christmas

Ever since I was little, the Christmas countdown was a big thing. I loved it and I think all my sisters and brother loved it too! My mom would hang it at the end of the hallway so it was the first thing we saw when we got up each morning. It was a big Christmas tree with 24 pockets that each held a candy cane. I thought it was the coolest thing ever and was so excited the day we got to start.  My birthday is also in December and my sister, just older than me, always made sure that no one else would touch the candy cane on my day! We all took turns and she made sure my turn would come on my birthday!

Oh, Christmas memories as a child! I have always loved the winter holidays, Thanksgiving, Christmas and New Year's Day were always spent with Grandma's, Grandpa's, aunts, uncles and cousins. I looked forward to them each and every year and have such great memories of Christmas time especially, even the year I tripped on a stair throwing my moms freshly made salad EVERYWHERE!

When I had children of my own I was on the look out for the coolest countdown ever, I have yet to replace the felt Christmas tree with candy canes that stuck on with velcro, But we have the same excitement with the countdown.  In the past we have made our own candy countdown and of course, the kids love that....anything with sugar!
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This year I found cute little boxes and made a countdown. I'm excited and yes, I may be a little weird but that's okay! The boxes are filled with candy for everyone but Owen, he gets a sticker in each box for his countdown nativity. I also added little notes in a few boxes with extra candy to give to someone who might be having a bad day. I figured they would take the extra to school and just eat it but so far both Bentley and Abby have given their candy away.

I had such magical Christmases that I want my family to have the same kind. We do love Christmas around here and we have some fun times. I hope we are making memories that will last a lifetime.

Halloween 2013

The last few years Lenn has carved a pumpkin for him and Owen.  He picks two designs and has Owen choose which one and then he carves it.  This year he picked Mickey Mouse, one of Owen's favorites and bucking horse, one of his favorites.  We were all pretty sure which one Owen would choose but he surprised was all by picking the bucking horse, go Cowboys!  It was pretty funny, Owen like them both and kept going back and forth but then stopped on the cowboy with a smile.  We knew what his choice was!

My pumpkin.  I was too lazy to clean it out!

Bentley did a Seahawks design, which he said he will NOT do again because it was a lot harder than he thought!

Abby choose a cute little ghost.  It still amazes me that she is done with needing my help with any of this.

A better picture of the Seahawks!

Pizza became a Halloween tradition long ago.  I used to make it but when they started making them this cute why bother making your own?

Owen has been called 'Superman' from the time he came home by a lady that helped him get here.  When I saw the Superman pj's I knew he had to be Superman this year.
Here he is ready to go for his van ride. 

And now what you have all been waiting for!!  Lenn got all excited about Halloween after seeing these blow up costumes so he had to get some and dress up! 
Ollie ostrich, Scotsman, Smurfette, Football player and Sophia

Off to trick or treat.  I had to follow them in the van, I couldn't miss out on what might happen.  It was hilarious!  He got so many funny looks from people. 

Then his nephew got home from work and got dressed up.  Oh boy!  I am not sure I remember the last time I laughed so hard!

Lenn wanted to be like all the pregnant women he has seen on facebook, so he held his belly!

I hope you all had a great Halloween!  We sure did and had a lot of laughs too!

Bentley turns 13!

Bentley is 13!! Yes, officially a teenager!  What could be scarier than that?  He had so much fun on his birthday, his smile tells it all! 
As usual, we had some last minute planning going on...I know that's weird!  Lenn asked "do you want to take a friend with you?".  I think that is when the cheesy smiles began.  We usually just do things as a family because we are so last minute and we never know what Owen might throw in there.
Lenn and the kids went and picked up the friends and came back to get Owen and I.  It was a little squishy but no one minded.  The kids giggled pretty much the whole ride. 
As we turned to head up Logan canyon, we noticed the go cart place was open.  We quickly changed our plans to include a stop there.  We have wanted to take the kids there but never have so Bentley was ecstatic to be able to go there.

During the wait!

Once Lenn bought tickets for the kids and watched a little, he had to go back and buy one for himself!

Abby was not a lover of this!  Her face showed stress the whole time!

After they got done, we all got in the van and someone mentioned "let's do it again", so they all piled out to go race again.  This time Abby rode with her friend and had a better time!
In the first race Bentley got bumped by one and then the other and flipped around.  He was giggling through the whole thing.  I wish I got it on camera.

And they are off.....on the second race.

I believe they said 'no bumping' but looked what happened!  Bentley's friend got the bump and hit this time.

The real reason for this trip was the Utah State football game. 
Big Blue came around so I went and grabbed him to get a picture with Owen.  Owen really was happy at this point but once I lifted his shade all smiles were off!  It really was perfect football weather: not hot, not cold and no wind.  Owen was perfect temperature wise, which is hard to get anymore.

Then Lenn and I both noticed the clouds coming in.  We were sitting apart so we were texting each other about the storm.  We decided to wait until half time and then Owen and I would finish the game in the van to avoid a down pour.  We watched the clouds closely and at half started for the van.  That's when the excitement began!  Owen's vent was alarming and Owen did not look good but my thought was to get to the van and do a cough assist.  (We have the new cough assist that runs on battery, yay!! Thanks Staci!)  After Lenn suctioned and it kept alarming we knew something was not right.  Lenn looked and it was a low pressure alarm, which means there is a leak somewhere.  We got Owen in the van and could not find the leak.  Lenn handed me the bag and I bagged while Lenn kept looking for the leak.  He found it but it was not good!!  The stroller tire had rubbed a hole in the tubing, yes the tubing that brings breath to Owen!!  Not good to say the least!  I remembered the duct tape and told him where it was and he fixed the hole.  Owen was pretty spent but was okay.  It took him awhile to recover.
In the mean time, the down pour had begun and the kids were still in the stadium.  Lenn had left his phone with them and each time I called, Bentley told me they wanted to stay.  The game was a blow out so we thought they would want to leave, no way!  'The game was awesome' Bentley told me and was mad when I told him they had to leave before it was over.  They were soaked and still giggling.  I didn't hear one complaint from any of them!

This year Bentley wanted cheese cake for his birthday cake.  I wasn't sure what to do with myself, not planning and making a cake was a little weird for me.  It was so easy and yummy too!

Happy 13th birthday Bentley!  He is just a goof almost all of the time.  I can't get a normal picture very often, he is always making some kind of face!

First day of (Face Time) Preschool!

Under different circumstances we would have sent Owen to Kindergarten this year, but since his birthday is after the first of the year, (by three days), we were able to choose to keep early intervention coming instead. 
I had a Mom come to me and ask if I wanted Owen to be involved with their preschool group and have them come to our house.  It was so sweet of her to ask, but no thank you!  Kids are way to sickly during the school year to be around Owen that much.  Instead we came up with the Face Time idea.
Owen enjoys it and from what I have heard the other kids do too!  I am grateful for the people who have been placed in our lives: very thoughtful, loving and kind.
That same week the same Mom took her iPad to story hour at the library to include Owen again.  He likes watching what is going on, but mostly loves watching all the kids.  

Owen's first day of preschool and guess what he chose for his show and tell?  Yep, Curious George.  He still loves George!

First day of School 2013

Another year has begun!! Bentley started 7th grade and is in the high school this year.  I can not believe my little boy is no longer in the elementary!  They grow up way to fast!  Abby started 5th grade and was so excited to have her kindergarten teacher back.  She loves her! 

Such a goof!



Abby loves her kitty's!

Abby was excited to be back to school to see her friends everyday, she found one before she even got to school.

 On day four Bentley finally had a few new school clothes.  I probably shouldn't admit this but o'well.  Things were crazy and it is hard to get away so I ordered online thinking there was plenty of time to have them shipped, boy was I wrong!  It took over 10 days to get his things.  Then his shoes didn't even fit, he needed a 10 1/2!! 
So yes, my son went to school in last years school clothes and he survived!  He didn't think he would be he did.

Happy 5th and 7th grade Bentley and Abby!
 

Blessings and Miracles

I am so far behind on blogging but I have GOT to get this written down before I forget!
I have mentioned how blessed we have been and it really hit me at fair time about a month ago.  We have a friend who watches Owen for us sometimes.  She herself is an angel!  This year Owen went to two days of fair but our friend, Vonda, watched him for us on the third day. 

It was getting about time to finish up and head home when I got a call from Vonda saying Owen is NOT happy.  My first impulse is to panic, but something inside always keeps me calm until after!  I started asking her questions that I have NO idea where they came from.  She answered and immediately I started telling her to check his numbers and do this and that and call me back in a few minutes.  As I hung up with her super powers kicked in, I couldn't find Lenn, again! And he didn't have his phone!!  This was seeming just a little too familiar.  I started taking down the canopy and putting everything in the van by myself while Abby went in search for Lenn.  I got everything put away and decided to go looking, after all it was the Rich County Fair not the Utah State Fair.  I ran to the where the exhibits were and found them.  I waved them over and said come on, we've got to get home.  We ran back to the van, why I didn't drive over there I do not know!! (Sorry for the site of the out of shape woman running in flip flops for any one who witnessed).

We headed for home and Vonda called and said he was doing better.  I still couldn't relax though because even though Lenn can drive fast minutes can be too long for Owen at this point.

We got home and figured things out and all was well after Owen had a very long nap with some oxygen!  I could not ask for a better person to have been with Owen during that time, she stayed calm and just cared for Owen.

After I looked back at everything that went on, I had a million things come to my mind.  How blessed we really have been!  Why I asked those certain questions, and had those exact answers, I have NO idea except that I know my Heavenly Father put those words in my mouth.  I was just His tool that day to help our Owen.  I was in awe that day as I reflected how many times He has taken care of Owen in spite of us.  Bentley and Abby have watched Owen when needed, we try to never be far away but sometimes if I have to run one to town or something the other one watches him.  In all those times Owen has never even had a messy diaper!  I know that sounds silly but they could not change him and he would be upset and not do well until he was changed. 

This fall when Bentley started football practice I would take him in and Abby would watch Owen.  One day I had this knot in my stomach and Owen was not very happy so I texted Lenn and told him he would need to take Bentley that day. Here is the great part about Lenn, he said 'okay that's fine'.  He never questions my thoughts or decisions when it comes to Owen.  Not ten minutes after they left Owen needed a few sets of his cough assist, which Abby cannot do.  I immediately thanked my Heavenly Father for making me stay home that day!  I could go on and on about the many miracles in our behalf with Owen.

Again Saturday night, we had another miracle/blessing happen.  It was Bentley's birthday and the plan was to go to the Utah State Homecoming game.  I had a feeling I should stay home but at last minute we decided we wanted to celebrate as a family. (Since I will blog on this later, I will get to the point). While taking Owen to the van his vent started alarming. Lenn suctioned him but it kept alarming.  He double checked the alarm and it was low pressure.  We couldn't find the leak so I started bagging him while Lenn looked for the leak. He found the stroller wheel had rubbed a hole in the tubing. NOT good!!  I then remembered the duct tape I had left in the van when cleaning it out and told him where it was.  He did a great job taping it and it held until we got home!! Huge blessing and miracle.  The miracle is that I actually listened to the little voice that told me to keep that duct tape in the van earlier this summer!  I am so grateful for that little voice and that I listened.  I know Lenn would have figured something out but I am grateful for duct tape!!

I know Owen still has work to be done here or he would not be here!  There is nothing that even makes sense why he is still happy, healthy and comfortable.  We do not care that it does not make any sense we are just happy we have had this time with him and pray we will enjoy all that we get.  Our Heavenly Father really does love each one of us and sends blessing and miracles daily.  Look for yours today!  They may be little but I promise they are there.



Happy Anniversary!

Happy Anniversary Lenn!  Our journey began 15 years ago.  It's been good, it's been great and it's been hard!  I wouldn't want to be on this journey with anyone else and although you may not be perfect, you are perfect for me!  (I know it's getting a little mushy for you but it's true.)

Most of the time you are the extra child but that keeps us young and I appreciate your humor even when it does not seem like I do.

You are the best husband and Dad that I could imagine for myself or our children. 

We appreciate all you do for us.

I appreciate that you are a family man.  It takes a lot to get you away from home and your family.  When you are away you make sure you have one or two travel buddies, (Bentley and Abby), if all of us are not an option. 

I appreciate that when Owen and Landry were born you stayed by my side and were involved with everything.  You didn't leave it all to me as many other Dad's have done with special needs children.  That means the world to me and shows me your true heart, that most of the time you keep from others.

 

Happy 15th Anniversary!  Loved you then, love you now and always will!

An Owen update.....

I know I am getting worse at keeping up on this!  It was supposed to be a journal....now you know what my journal looks like! 
I love Owen's look on his face in this picture, it is so him!  Abby is showing the burp clothes she made for him.  She has been on a sewing kick this summer and so she took some scraps and made these pretty much by herself.  She did a great job.
Owen has been needing burp clothes like crazy lately!!  I am doing a load of burp clothes about every other day.  Yesterday I counted them...42!  Yes, he is going through that many in 2 days.  Crazy, I know!  I can't quite figure it out either so it makes me crazy.  It doesn't seem to bother him so I guess it's okay.  It's not the constant laundry that worries me, it's all those secretions waiting to be a breeding ground for bacteria!
I thought is was one thing, but ruled that out, then another and another.  He does have some allergies so that can be some of it.  I guess I will just keep that washer going!!
Other than being really gooey he has been doing well, he stays happy unless he doesn't like something.  He is staying healthy, knock on wood, so we are happy.

And here is the other Owen miracle, he has had so many!  Yesterday as I was thinking, 'I didn't even get the burp clothes folded and put away and they are gone', it hit me that a miracle was taking place.  See in the past 5 years Owen was only supposed to get weaker, that hasn't been the case.
When Owen was born he couldn't open one of his eyes, a few days later he had both open.  As the months went by he gained a few more movements like smiling, moving his wrists and fingers, moving his head once and rotating his ankle.  As he got bigger he began to lose these little movements, but as each movement was lost his facial expressions got stronger.
The new miracle is with all these secretions he should be aspirating all the time.  We were told that he would never be able to protect his airway.  Guess what?  He does and he has even learned to 'spit' them out.  These secretions should be draining into his lungs but instead they are ending up in a puddle on a his burp clothes!  Amazing if you ask me!
I will try to do a little catch up sometime and then do a better job on updates!

It's finally time.....

 Abby finally decided her hair was long enough and it was time to cut and donate it! 

Here it goes!

 That should make a great wig for someone.  Good job Abby, I sure love your giving heart!

 

Today was pioneer day for Abby at school.  She has been so excited for this day and then she got picked to wear one of the dresses!  She thinks this is the coolest dress ever.  Then Uncle Bill was over last night and told her some stories of pioneer ancestors for her to share in class.  She was stoked when she left this morning with her pioneer lunch and all!

Not sure the pioneers ever got to wait for a bus ride though!

Talking candid...if we must!

The last few weeks have been hard, emotionally and mentally!  About a week and a half ago we went to Primary Children's for Owen's yearly appointments.  He doesn't like going to say the least, and the first one we saw was even a favorite.  She has been an angel for our family, but Owen was not happy, maybe even throwing a little fit ;) (I don't blame him).  The doctor said "okay things don't look great let's talk candid if we can".  Lenn and I just looked at each other and wanted to make a mad dash for the door.  Since we couldn't leave Owen and the doctor was in front of the door we had to stay!
I turned to Owen for strength and he was still so upset.  He was red faced, even running a slight temperature, clammy and COLD!  I could see where she was coming from but I like to speak candidly with close family and friends usually over the phone or computer where I can hide a little.  Some people like to wear it out on their sleeves but I would rather cry in my own little corner all by myself.  We talked for a few minutes about Owen's future and how he might have days, weeks and maybe months.  We have heard this over the last 2-3 years and he is still holding his own.  Although I do believe his little body has done about all it can.
After she asked us to speak 'reality' we wondered if we were putting on too much of a 'public mask,' that others really thought we were in lala land and that everything is grand! Oh dear no!  Maybe before Landry came and passed away, but since then we KNOW the reality we are facing with Owen.  We don't love it but we can't change it.
We are always asked 'how is Owen?'. Our reply is 'good'.  We aren't lying to you, we just don't want to explain the whole situation each and every time, so please forgive us.  He is as good as he can be and we choose to look for the positive rather than the doom and gloom.  But here is our reality as we know it:

Owen will pass away one day, long before we could ever be ready!  We feel each day is a day on loan to us.  There is already a headstone in place.  I don't love the reality of that, but I do love the headstone.  It is perfect for our boys and having them together helps in a way, I guess.  Knowing that they are brothers and they will be together.

Owen is thin!  Oh my goodness he gives new definition to skin and bones.  But there is nothing we can do about it.  We have tried numerous times to up his calories but his little body just can't tolerate it.  We are giving him all that he can tolerate and still be happy.  He is 5 years old and weighs as much as he did at 9 1/2 months old.  Yes, that one hurts!!  Thank heavens he was a chunky baby!
 

He is happy!  He still smiles and gives us looks with his beautiful eyes.  We feel like as long as he is comfortable and smiling we are okay.  If he does become uncomfortable and miserable then we will have to muster the strength to take action and help him on his way to heaven.
We pray that it will not come to that.  We hope that when his mission here on Earth is done that Heavenly Father will take him on his own without us having to make that horrible decision that so many loving parents have to make.
There is the harsh reality.  Maybe I keep it to myself because it is so emotionally draining to think about losing my son all the time.  I am trying to enjoy the little things and I remember hearing a mom once say, 'I have all the time in the world to cry after my baby dies'.  I have shed my fair share of tears but I'm trying to be happy while he is here.

After his fire truck video on his ipad and at the end of all the appointments this is what he looked like, much better!  I sent it to his doctor and she was relieved to see his smile back on his face.
For now we will enjoy each of these smiles and try to feel his special spirit that he brings to our home.  We love our little Owen and can't imagine the day when he is no longer here with us. 
We realize things are going down hill for Owen but we are taking it a day at a time and that is about all we can do right now.

Thank you for all your love, support and concern.