The Johnson Adventure's

Thank you!

2012-02-06T10:21:00.005-07:00

~Bentley telling Owen goodnight~

I just wanted to take a minute to tell you all thank you! Whenever I post something about Owen not doing great we are surrounded by love from all of you.
Thank you for your concern, love, prayers, cards, emails and comments. We can feel the love of the prayers being said for Owen and our family. It always seems to help Owen out.
He is still losing weight but continues to be comfortable and the light of our home. He has such a special spirit about him.
He is battling a sinus infection (nothing new). I started him on an antibiotic today so he should be feeling better in a day or two.

I also wanted to let you know that I made it easier to leave comments on here. So give it a try, we love to hear from you!
Again thank you for all of your love. We love you too!

A blatin' and a beepin'

2012-02-03T15:26:00.007-07:00

Well, last night here at the Johnson residence was an interesting night to say the least! It started about 9 p.m. with Lenn and Bentley going to put the sheep in the barn for the night. As Lenn walked into the barn, he saw the ewe that can't get up had lambed and had triplets. Since she can't get up, we got to start the lambing season with 3 bum lambs. Of course it was getting late and the lambs needed to be warm and dry, so Lenn brought the lambs to the basement for the night. We finally got them full and settled around 11:30 p.m. and went to bed. I awoke to the blats around 12:30 and then 1:30 am, we gave up and got up to feed them. We went back to bed only to barely get back to sleep and awake to Owens' alarm. He needed suctioned, he rarely needs suctioned at night, so of course this would be the night. I went back to bed and slept for another hour before more blats and an alarm.
Owen usually sleeps all night with maybe one alarm, last night he had 3 or 4. It is amazing how lack of sleep messes with your mind and memory!!

But look how cute they both are...who needs sleep anyway??

No Regrets

2012-01-21T15:35:00.005-07:00

One thing I will always somewhat regret is not having a real family picture with Landry. So now sometimes when it Lenn's turn to go to church with Bentley and Abby, I'll get Owen and I ready and when the others walk in the door I grab them to get a quick family picture. (It usually takes a bribe for Bentley and Abby.) It isn't ever anything fancy but we are together and that is what matters. I wish the quality of the self-timer picture was a little better but o'well.
I have a hard time having a family picture without Landry so I figured I would stick him in there too.

A little update on Owen: I think we have a winner on a diet with a few more calories and a new medication for comfort. It is hard to tell how well he is tolerating it though because he hasn't been feeling great. I am not sure what it is for sure, a cold or just some sinus yuck, and he has always had issues with his ears and I think one might be bothering him. He has good days and not so good days. Over all he is still a pretty happy little guy, he is such a trooper and we can't help but be happy around him.

Time for an update

2012-01-16T14:15:00.006-07:00

Now that Owen is 4, he is a sunbeam in Primary at church. The sunbeam teacher is a great lady and wants to have Owen involved even though he doesn't go to church. She sends home the lesson each week and told the class about Owen. This is the crown from the first week, his classmates put the stars on for him. The picture he is holding is from a little girl in his class. She went home and kept asking her Mom, 'who is Owen?'. Her Mom took her to our blog and showed her Owen, so she made him a picture and had her Mom write a little note on the back. So sweet!! Each time I think of this picture and note I get teary eyed. The love of this little child and the example of her Mom are great examples to me. Now for the update...I love the holidays and the fact that you are so busy that reality kind of slips away. But now that the presents have been opened, decorations put away and cake and ice cream have been had for Owen it's time to get back to reality! Darn, too bad I can't stay in la la land!
In November of 2010 Owen's bowels started slowing down and he needed more than just juices, so we were introduced to giving medications throughout each and everyday. It was well worth it because he was so much more comfortable with them. Then he stopped tolerating night feeds (which is when you can push more calories). A few months later he needed a different formula that was easier to digest. In another few months he needed yet a different formula. As we stayed on top of things he has stayed happy and comfortable. His smile really makes dealing with things easier. He is still happy, healthy and comfortable besides a few head colds/ear infections now and then. We pray everyday for the comfort to continue.
In November of '10 he weighed just under 40 lbs., he is now 30 lbs. He is not able to tolerate more formula for added calories, we tried again this last weekend and by Sunday night he was not happy, as soon as I pulled most of his food out a look of peace came over his face. He slept much better and woke up looking as though he slept well. We have a few other options to play with in his diet so we hope we find a winner.
I know this update isn't a cheery everything is great update but so many of you ask about Owen and our responses are "good, he's healthy, fine, okay, he's happy" which are all true but the reality is Owen is good but not great. It's hard to be brutally honest in public for fear of having an emotional break down in front of everyone. He is happy but his little body isn't holding up like a healthy body should. He is four and his body is trying to grow but cannot take in the needed calories it takes to grow. We will do our best to keep our little man as happy as we can.
We have been so blessed for him to do as well as he has and we will always be grateful for that and this precious time we have with him. We work with some amazing people that help us with Owen's needs and diet and I know they do all that they can to help him. Now it is up to the Lord, we are banking on His love, comfort and guidance at this time.

Owen turns 4 years old

2012-01-05T09:34:00.013-07:00

HAPPY BIRTHDAY to our little, big man. What an inspiration he is to all of us. He is one amazing boy. I cannot believe we celebrated a 4th birthday with him, it still hasn't really sunk in yet. He LOVES Mickey Mouse Clubhouse on TV so I made Mickey this year. I think he was wondering why he couldn't snuggle with this Mickey, he loved looking at his cake but when I let him feel it with his hand he cried. It wasn't near as soft as his real Mickey.

"Here's the Mickey I was looking for."

Lenn figures Owen is the only one that gets his cake in the chair.

Lenn brought him this balloon and thought he would love it. It turns out it took a few days of warming up to the balloon.

Sending Happy New New Year wishes to Landry.

Sending birthday wishes to sweet angel Mercydez.

Happy birthday Owen, we love you so much.

More December happenings

2011-12-27T18:03:00.009-07:00

December came and is almost gone! Here are a few things that happened in the Johnson household.... Owen and Woody sitting down to watch Toy Story. Sorry, I could not get the picture to rotate and upload the right way, just turn your head :)

Bentley and his monster icicle.

In the school play Abby was a reindeer.

Bentley was a pirate. Yes, it was a Christmas play.Abby's clogging recital. She did great.

Abby and some of her classmates that clog too.

Gingerbread Houses

2011-12-23T08:40:00.005-07:00

This year I decided Owen needed to make his own gingerbread house and not just watch Bentley and Abby. I put a towel on his bed and he and I made his gingerbread house. He loved it! He thought it was pretty cool to pick the candy and colors. He didn't want it to leave his bed, he looked at it for most of the evening. (It actually turned out to be his Christmas Shrek shack because I could not get the roof to stay up!) Bentley wanted his sides to be perfect, so he planned it out and then went to work.Abby had a runny nose so Bentley insisted she wear a mask so she didn't get any germs on the candy. (Don't ask me how they make it in the outside world!) Bentley's front and side.

Abby's front and side.

Merry Christmas..lights

2011-12-08T15:20:00.000-07:00

Lenn's Christmas lights are up again:The reason for the season....

The middle.....
The twinkling wreath(new this year).....

The reindeer.....

The other wreath....

The twenty foot Christmas tree (new this year). This tree was a family affair, we chose the COLDEST day to put it together. We were all freezing, but everyone was a big help, even Owen, not one alarm during the whole process.

Here is the whole scene!

Thanks Lenn, you did a great job. We hope you all have a wonderful Holiday Season, enjoy it all and have a very Merry Christmas.

Decorating the tree

2011-12-02T20:49:00.007-07:00

Believe it or not, it is that time of year again. We love the Christmas season in this house!! This year we couldn't wait until after Thanksgiving so we put up the tree the Monday before. Lenn decided he would hang out on the couch with Owen and supervise. Then Bentley joined the boys and boy did they supervise!

My sad attempts at trying to get the whole family in the picture! I gave up and Abby and I got to decorating.

The girls.

Bentley finally joined in on the fun and put on a few decorations.

We hope you are your families are well this Christmas season and that we all take the time to remember and celebrate the birth of our Savior Jesus Christ.

More to come on Lenn's Christmas lights this year........

Halloween Fun

2011-11-07T14:08:00.002-07:00

Some of our Halloween fun: The Halloween party with some of the cousins. Lenn and Owen sat this one out, it is that time of year again :(.
The donut on a string!! I don't know who it is more fun for, the spectators or participants?

Bentley's pumpkin was quite impressive, so many little teeth.

Abby insisted on doing her pumpkin all by herself this year. It turned out great too!

Lenn had Owen pick the design for his pumpkin and then Lenn carved it.
All of our pumpkins together.

The night came to dress-up. Bentley was being his silly self, but once that wig went on it at least doubled!! I was trying to take a picture of the cute cowgirl and the hippie kept jumping in the way. When I told Lenn what Bentley was doing, hoping for some help in the control department, Lenn starting jumping in too!

We finally beat the boys with the snap for the cowgirl.

The hippie with Spider man. Wow, look at those muscles. Abby thought it was funny that Owen had all those muscles and still couldn't move.

As usual, Owen wasn't too happy about going anywhere, but once he got to the van the smiles began.

While Bentley and Abby were trick-or treating, we were run down by a sweet lady. She came up to the van and handed me a little foam pumpkin and said, "this is for Owen". Then she told me' "last year I gave him candy and felt really bad about it afterwards, so I got him a pumpkin instead." How sweet is that? That was so thoughtful and kind. Thank you! Owen loves his pumpkin, it fits right in his hand.

Fall 2011 Pictures

2011-11-03T10:52:00.000-06:00

Bentley 11 years old, I found out he will do about anything if he can have a football.

Abby 8 years old

Owen 3 1/2 years old

Bentley's peewee football

2011-10-17T14:04:00.006-06:00

We made it through another year of peewee football. This was Bentley's last year and next year he will be playing in Jr. High sports. His team had a great year with some really great coaches. The dad that was in charge this year got some of last years high school graduates to coach the boys. They did such a great job with them. The boys loved them and worked really hard for them.
In fact, they were so great I have to tell about our last game. In Cokeville 3rd graders play to help with numbers. This year there was a 3rd grader that has a love for football that is unmeasurable, but his physical capabilities hold him back a little. His one side is very strong but the other isn't as strong due to some strokes as a newborn. The coaches knew of this love and in the last game they had a special play just for him. They had the 5th graders go in to block for him to run the ball. They wanted him to score but it didn't happen but he made it a good 20 yards or so. It was incredible that these boys just out of high school would even think of such a thing. Not only did they make this 3rd graders day, they taught all those players a great life lesson. It is something that Bentley will never forget doing. He loved going in and blocking for this boy and will forever look up to the coach that had him do it.

With that said, enjoy the video of Bentley's years of peewee football!

Bentley's Peewee Football from Gayle Johnson on Vimeo.

Not already!!

2011-10-06T18:49:00.002-06:00

I am so NOT ready for this!!!

It snowed all day today, I am sure it will be gone by tomorrow but I am not ready for winter again. It just ended, didn't it?

Day 2 of our little vacation

2011-10-01T12:36:00.006-06:00

I have been bugging Lenn for a long time about taking Owen to the Zoo. He has never been there and I think every child needs to go to the zoo. After we got there though I realized a movie about the zoo might have been better for Owen but o'well we were there so we might as well enjoy the atmosphere.
Bentley and Abby were tired from the night before but they still seemed to have a good time. Bentley is always such a good helper when it comes to helping with Owen or his equipment. We decided to rent a wagon to pull around suction and diaper bag. Bentley insisted on pulling it around almost the whole time and you know how steep those little hills get when pulling or pushing something. Bentley and Abby love posing with all the statues.

Abby couldn't figure out why this turkey wasn't in a cage or something. It was walking amongst all the people and it had Abby baffled.

This was one of the few animals that Owen could see and he loved it. The gorilla came right up to the glass and then sat down with his back to us. It was funny he kept looking over his shoulder at Owen and Owen didn't take his eyes off of him.

Of course the train ride. I was a little disappointed that Owen couldn't go on the train but Abby and Bentley still did and had fun. I never realized what all the kids laying in a stroller miss at the zoo and if they can't get out they can't even go on the train. It is crazy what we take for granted.
We had a great little vacation, not far from home and not too long. It was great. I was a little worried about germs but we survived and everyone is well.

JIMMERED-Oh Yeah!!

2011-09-24T17:05:00.014-06:00

So much to write and so little time! We have been meaning to take a family vacation and it hasn't happened until now. We decided to include it with the 'Jimmer's All-stars' game. Bentley and Abby have been asking to go to Chuck E. Cheese's since we lived in SLC with Owen, so I thought we would go early and take them there. They had a blast, but I left the camera in the van so you will have to take my word for it. Bentley, Abby and Lenn hit the games and Owen and I watched the animated animals sing. Such fun! Owen loved it though, nothing can beat music and lights even when it's cheesy.
Then we headed to the hotel to get Owen plugged in and re-charged for the night. Bentley and Abby even had a little time to swim.

Then it was time for the big night. We were all excited for this, even Owen loves Jimmer. Last year I would hold him and watch Jimmer and every time we cheered and yelled 'Jimmer' he would smile.

So here are a few pictures....Owen and I were up in the handicapped seating, it looks really far away but we could still see everything. Again, Owen loved all the music, lights and cheering. (He did have ear plugs.) Lenn, Bentley and Abby were right across from us on the front row. Bentley and Abby got to give all of Jimmer's team five as they came out on the floor.
One of our favorite NICU nurses was at the game too. She came over to visit during half time but I am not sure any of us heard what the other said, it was so loud.Of course we were all hopeful to meet Jimmer and some of the players but we heard that our chances were slim to none since all the players were now NBA players with agents. BUT....our luck was with us that night. Jimmer's brother and friend did the half time entertainment and after they came and stood right in front of Lenn, Bentley and Abby. Lenn took a chance and ask about meeting Jimmer and they said they would see what they could do. They told him if I could find a way down the elevator they would get us back there to meet Jimmer. I found a way down! We got to meet the two of them. While we were waiting, Abby came over to me and said, "I can stay awake if I get to meet Jimmer." I looked at her eyes and she was tired to say the least. After awhile Jimmer's agent came and got us to take us back behind all the security. It was AWESOME, we were so excited.

And here is the man himself. He seems like a really good guy. After we met him and talked for a minute his finance' came back and we got to meet her too. She is also very nice.

Luck was still with us and we got to meet Jackson Emery too! Super nice guy! As we were visiting, Kemba Walker came by and Lenn got to shake his hand too. What and amazing night, I could hardly sleep that night I was so excited.

Eleven....whhhhaat!

2011-09-18T16:06:00.010-06:00

Bentley turned the big 11 this year. I thought he would be done having 'cute' cakes, but I was wrong. As we were watching Despicable Me, he said "Mom I want a minion cake, the one with the diaper."
He actually got two cakes this year. Kids always want a party with friends but I have never braved that one, so last minute I decided to surprise him at the park with cake and ice cream between school and football practice. We had one of the coaches tell the boys and we told Bentley that the coach called and wanted them to meet at the park to go over some football stuff.
After school as the boys were coming, Bentley kept looking at us wondering what we were doing there, finally he asked, "where's McKay?". He was there for football not cake and ice cream! It was pretty funny.
Cake #1All the boys in Bentley's class except one.What is this??? Bentley couldn't figure out why I was telling him to read the paper. Then he saw 'Jimmer's Allstar game' and realized it was a ticket to the game.Bentley's Jimmer Fredette jersey.

Cake #2, the minion in the diaper. Go ahead and google that to try to find a picture of it.

Bentley shares a birthday with his uncle Bill, Lenn's brother that lives near so we celebrated together. Happy 11th birthday Bentley, we love you!!

Wow, who is this helping clean up after the party??? Thanks Lenn you are the best sweeper!

Just in time.....

2011-09-11T15:23:00.008-06:00

It time for football again. Bentley LOVES football and pretty much counts down for the season. Owen has made it to all of his games the last two years and we want to keep that up. One week before Bentley's first game his new stroller came. It came into Salt Lake and Lenn's sister was coming up that weekend so she brought it up for us and we are all excited!
Owen's physical therapist came and made sure it would be comfortable for him. He is set with pretty fancy new wheels.
Enjoying a little sunshine, but not too much of it.

Bentley is #20 this year. Here he is with some of his 5th grade buddies.Devan and Bentley, one of Bentley's best friends since pre-school.

Some of the team. They had a Jamboree on Saturday and they played really well as a team and beat all of the teams there.

First Day of School

2011-08-30T10:50:00.005-06:00

I can't believe it, but it is here. Here we go starting a new school year. I am not sure where summer went but it is gone. Abby's first day of 3rd grade.

Bentley's first day of 5th grade.

After school bus treats, I usually make a cake but I totally spaced it this year. I guess twinkies will do.Poor kids...can you tell it was really hot? The air conditioning was out and it was HOT!

Fair week

2011-08-24T11:57:00.008-06:00

We had quite a week with fair...some good and some not so good! It was a learning experience for sure this year. In the end, it is done and over with and we are ready to plan for next year. Yes, I think we must be crazy! Abby wanted to put something in the fair so she did a few etched pictures. She got blue ribbons and was tickled pink.

I put a flower arrangment in the Home Arts. I love my flowers in my yard. Even though I am not outside a lot I love to look out the windows and see beautiful color. I got grand champion, much to my surprise!

Thanks to our 4-H extension agent we got ring side seats reserved. Lenn bought a canopy and it ended up being a very good investment.

Getting settled for day one!

Bentley showing Jimmer. He showed really well, he got a blue ribbon in showmansip.

As much as we liked Jimmer, the judge did not! Again, Bentley did great showing him. He put in quite a bit of hard work and time this year and he is already talking about what he is going to do next year.

Abby wanted to buy and raise a lamb for her herd this year. She decided since she wasn't old enough for 4-H she would practice for the open show. She did great. She was the only one that had her own lamb that she had trained and worked with. The whole class got blue ribbons.

Abby showing Flower

That was our fair week in a nutshell. It is always nice to have it over with, but we had a good time doing it.

Abby's Baptism

2011-08-01T12:03:00.001-06:00

Abby's baptism went well. I cannot believe how fast kids grow up. Everyone warns you when they are babies, but it is hard to believe when they are so tiny.
Abby has been excited to be baptized since she was 5! She started counting down the years and planning her program. It changed over the years, but it was fun to see her excitement.
Both of her Grandma's gave her a special gift, one was a baptism necklace and the other was the handmade hair piece.

Abby and Lenn before she was baptized.Family Photo

Abby's baptism from Gayle Johnson on Vimeo.

Congratulations on your baptism Abby, we are so proud of you and love you so much.

Oh yeah, the parade

2011-07-17T15:35:00.004-06:00

How could I forget to post the parade pictures...after all we waited three days for the big Woodruff Fourth of July Parade.

Our fourth of July

2011-07-16T07:42:00.009-06:00

As most of you know we are very last minute planners. Lenn came home at 6:00 p.m. and said "let's go". I should have known and planned and packed but I didn't want to do all that work just to unpack it. We packed that night and headed to Provo the next morning, planning to hit the Woodruff parade on the way. We got to Woodruff a little earlier than planned and had the pick of the parking places. We stopped at the Post Office to mail a letter and Bentley came out and said "are you sure the paraded is today?". "Yes", Lenn and I both said we had check with the highway patrol the night before and he told us it was the next morning at 10 a.m.. Come to find out he was wrong. The parade would be the following Monday!!! Bentley was just glad we hadn't unpacked the camp chairs and waited. We were on a great start for the day!One of the reasons we couldn't decide whether to go or not is Owen's stroller. We no longer have a stroller that works for him. I called a SMA Mom to see if she knew of anyone that had one available. She told me no, but she told me what they did with their son years ago when strollers weren't what they are today. The story is hilarious, but I will keep it short. They rigged up a mechanics creeper and pulled him around where ever they went. Creative I would say. After talking to her I thought of our wagon we used when Owen was a baby and asked Lenn if he could figure something out. He went to work and rigged up our own homemade ride. Owen doesn't fit real well in the wagon but Lenn did a great job at making it work to carry him and his equipment. ~Some of the Johnson cousins~

Some of Lenn's family has a tradition of sitting outside the BYU stadium for the Stadium of Fire. We joined them this year and had a great time. I didn't get any pictures that night because I was holding Owen. He loved the fireworks, the louder the better. He would be watching with a small smile and then a noisy one would go off and he grinned from ear to ear. Bentley and Abby loved them too. I don't know what is more fun for them, the fireworks or playing with cousins while we wait for the fireworks.

While in Provo we called some of our friends from the NICU, Nic and Ashley. We haven't seen them since and it was so nice of them to come and visit. I have talked of them and their little angel before. Owen and their angel Mercydez share birthdays. We were so lucky to get to meet them while there. They have been such a strength and inspiration to us. Ashley's blog often serves as therapy for us. She is always so loving and positive when talking about her angel. Their family will always be very dear to our hearts.
They are such sweet people, they showed up with friend magazines for the kids to read on the way home and a huge sack filled with lunch for all of us. After they left Bentley looked in the sack and said he would eat their lunch anytime. Thanks Nic and Ashley. This picture of Nic and Owen wasn't the one I wanted but will take it. Nic was talking to Owen and I could see the love Owen had for Nic. He was smiling and really into Nic. I was trying to get my camera without disturbing the moment but by the time I got it Nic was getting ready to leave and had told Owen good-bye. So that smile from Owen isn't on camera but will forever be in my mind.

Owen's new ride....well almost

2011-07-11T16:30:00.000-06:00

In the search for a new stroller for Owen we were able to meet another SMA family, the Riggs'. It was a great experience. Last fall we saw a story on a SMA family, the Coleman's. We started following their blog and happened on to the Riggs family blog. Their little Karson wasn't doing well and our hearts hurt for them. We followed their journey and contacted them through email and phone. It seemed like Karson's Mom, (Jody) and I quickly bonded. I had emailed her asking about Karson's stroller, she emailed me back offering his stroller to us to use for Owen. We were so touched by the offer. We were also excited to have found a new stroller so quickly. We set up a date and we met.

Abby was really excited, she had written to Hadley a few times and couldn't wait to meet her. We were in the Home Depot parking lot but the kids didn't seem to mind. They played and giggled for about two hours while Lenn and I visited with Jody.

It was so good for us to meet another family like us. Their Karson passed away in January, and of course they are hurting but they seem like a great family that will continue to be great through their trials.Bentley even enjoyed the time spent. He mainly teased and chased the girls, but had a good time anyway.We didn't try Owen in the stroller that day in the parking lot for obvious reasons. We also wanted his PT to fit it for us. While we waited for the PT, I adjusted the stroller to as big as it would go and put Owen in it. At first he cried, then I made it a little more comfortable and he didn't mind it too bad. When his PT came, we tried to find a way to make it longer, but no luck. Owen is just too big! So it was a nice try and so nice of the Riggs to let us try. We are grateful to them and very grateful we were able to meet Jody and Hadley.

Summer starts with a bang!

2011-06-16T21:40:00.002-06:00

Bentley and Abby play softball in June and they love it!! Abby usually starts counting down to June in January! This year Bentley started out with a great game, he hit two home runs in the first game!! He was so excited and we were too. Tonight he hit two more.Abby did great too. This is her first year with the pitching machine. She is still learning but is catching on fast. Owen has even made it to all the games so far. He hasn't made it out of the van, but he is there. That means that Lenn and I are both there too. Bentley and Abby get excited when we can all go to their games. As for an update on Owen: he is still happy and smiling but he has lost weight. Not exciting. He did so well holding his weight for a long time but I knew it couldn't last too long. We have cut his calories as I have mentioned before. He used to get 18 oz. 3 times a day and now he is only tolerating 11 oz. 3 times a day. He has lost about 4 pounds, which doesn't seem like a whole lot but when talking about a three year old it is quite a bit. He still has his chubby cheeks though.

On a good note, his speech therapist is great! She made some colors and shapes for him to learn. It is so fun! We hold up one shape or color and tell him what it is and then another. Then we hold up both and ask him to use his eyes to tell us which one we are asking for. He does really well with his shapes but with his colors he doesn't like to pick the colors that are not his favorite. He is a funny boy! For awhile he didn't like yellow so he literally would not look at it. He loves blue, black, and brown.
His OT/PT always brings tastes or new toys for him, one of the favorites is sour spray candy. Go figure! It makes my lips pucker just thinking about it.
He loves all three of this therapists. When I tell him they are coming he smiles. They are all so good to him and with him. We have been fortunate to have good ones we all like.

Our first taste of summer

2011-06-15T16:09:00.000-06:00

FINALLY, we got a little bit of summer. We didn't get much spring so we were ready for something a bit warmer than what we had.
We broke out the hot dogs and smores. We love our campfire dinners and we were ready for them this year. What a long winter!!
Lenn's fancy grill he made worked perfect to melt the chocolate for the smores.Yummy!! I had a perfect picture of Abby after her smore but she said no way to it going on the blog.

Memorial Weekend

2011-06-05T13:40:00.008-06:00

The weekend was stormy pretty much the whole weekend. We took decorations up Friday but the weather was too bad to get Owen out so it was a quick visit. We went again Sunday afternoon, it was stormy again but not long after we got there the sun came out and was nice for awhile. A lot of Lenn's family lives near so they met us there to decorate their grandparent's graves and then Landry's. They brought some cute things to add to the decor and it turned out nice.

Owen enjoyed getting out even though this picture doesn't show it. He loves to watch the tractor wheels turn in the wind.

It is heart breaking to have a child's grave to decorate but we try to make the most of it and some how celebrate having Landry in our eternal family.

This is how we ended May!

Misc. May 2011

2011-06-01T14:45:00.007-06:00

This post is a random catch up of most of May!
Abby is growing up so fast and it getting into hair and looks. It is a little scary, she is eight! She loves to change her earrings several times a day but I think the newness will fade and she won't have to change them to go feed the lambs!! She loves playing with the camera and taking pictures of herself and whatever else comes along.

Bentley is doing 4-H again this year. He got two lambs, just in case, but he can only show and sell one. So.....introducing... Jimmer and Fredette! We were big Jimmer fans this year and Bentley thinks he is wonderful so he decided those would be perfect names for his lambs this year! Just for clarification, he is not a BYU fan just a Jimmer fan. Bentley and his class played their recorders at the Jr. High Band Concert. They did great. I have to share this picture because when he sat down he made sure he was behind his music stand.

These are daffodils from my flower bed, they are beautiful this year. I love them. They remind me of a great service that was done for us the year we brought Owen home. We had to move to SLC until we got everything in order with equipment to bring him home. We moved home in July and needless to say the yard was more than a mess!! A youth group from the SLC area were coming up for youth conference and had asked around for a service they could do. Somehow we were chosen. One of the leaders brought these daffodils to plant for us and each year that they come up I am reminded of that great love and service in our behalf.

Bentley is published!! I know a lot of kids were probably chosen for the book of poems but I am still proud of Bentley. He is a good student and can do just about anything he sets his mind too.

Wild Horses

Wild and free they run.

Through the shrubs and past the trees.

They eat mild green grass.

Colorful as they run past.

They run like speeding lightning.

And then there is Owen. He looks so old when I cut his hair, but he has to stay lookin' sharp. We are still able to help control his comfort (a huge blessing). He has his days though and last week he had more than his share. Once I adjusted his feeding again he was better. I am thankful he is still able to take in some calories.

Abby's Field Trip

2011-06-01T12:30:00.000-06:00

This year I went with Abby's class on their field trip to:The Geyser at Soda Springs,The hot pools in Lava Hot Springs andthe Pocatello zoo. In the past I had often wondered why they try to fit so many things into one day, but after going with them I understood it perfectly. We weren't even to Soda Springs yet, (about an hour away), when we were already getting the question "are we there yet?".
Each and every person that works patiently in the school system should have all of our respect. It was so cold that day, but it didn't dampen their spirits at all.

Owen's Appointments at Primary's

2011-06-01T12:00:00.002-06:00

Here is another angel that we have been so blessed to have in our lives since Owen. This is Dr. Murphy. WE LOVE HER!! She is absolutely amazing to us and Owen. I finally remembered to get a picture with her.
Owen's appointments went well. His weight hadn't changed much at that time, which was great. Dr. Murphy was amazed at how well his bowels were working because of how slow they sounded. Every doctor is always amazed at how well Owen has done. They give us the credit, but for me the credit all goes to our Heavenly Father.

Here is another little angel, her name is Lauren. She and Owen were in the NICU together and we were able to meet her and her parents, Keith and Rushell, when we were making the big decision of whether to trach Owen or not. When we met this little girl we knew it would be okay. She still has her trach but is only on the vent at night. Her parents were great support to us and have cheered us on. I have even called Rushell for quick emergency advice and the calls end with "I will say a prayer for you". Such a sweet family. We are so grateful we were able to meet such great people like them and others through this journey we now call life!! We wanted to get a cute picture with Lauren and Owen but it wasn't going to happen. One of the doctors had just changed Owen's breath rate for a trial run and he did NOT like it at all. Of course that is when we had our visitors. As soon as it was changed back and we were out of that room Owen was back to being himself again.
After his appointments we went upstairs to meet another NICU Mom going through the same decision about to trach or not. While we were there we were able to see a lot of our 'NICU family'. It was great to see them, in the hallway just for a visit! After we left there I realized I didn't take one picture of any of them, I was so sad. But we love them all!

Abby's clogging recital

2011-05-22T17:33:00.003-06:00

Here are a few short clips put together from Abby's recital.

Clogging and Arrow of Light

2011-05-12T09:09:00.000-06:00

Bentley earned his Arrow of Light award in Scouts. He was pretty excited to get everything done to receive this before he turned 11.

This is Bentley at his best! He would always pose like this if I would let him. I usually don't share his goofiness but I thought I would this time. I need to enjoy this part of Bentley more. He is a funny kid and I need to laugh more and enjoy each moment. It seems like he only wants to share this side when I am trying to get him to do something else though. I am trying to learn to take a deep breath, laugh and then get back on track.

Here he is all dressed up for the part. We were afraid he was going to get to wear that lovely triangle for quite sometime, but it finally washed off.

Now for the girly stuff.....

This is the one picture I got of Abby in her costume before the show. I should have embarrassed her, made a scene and took more but I didn't.

My camera doesn't take great shots in the dark but here she is, (second one from the back), doing what she LOVES. I am not kidding when I say she loves clogging. When she thought the December recital was it for the year she started begging Lenn and I to let her clogg the next year. Her practice was on Wednesday's and she had to have a special outfit each week. I am quite sure they are worn out from the washer but they were her clogging clothes and she HAD to wear them each week. She didn't care what the kids in her class said about it either. That's my girl, determined as ever.

She had a great teacher and hopes she will teach again next fall after having a new baby. We'll keep our fingers crossed.

I have video so as soon as I take the time I will post that too.

A new day!

2011-05-04T11:17:00.003-06:00

Of course after I posted yesterday, Owen had a messy diaper and has been happy ever since!!! That's our Owen, he likes to keep us on our toes!!

Owen still smiles

2011-05-03T15:31:00.005-06:00

I promised updates and I haven't been great. Sometimes it is hard to know what to write and how. Today has not been the greatest for Owen. He hasn't been himself. He has given a few smiles but I had to work for them.
Last weekend I had to drop his feeding rate again. He seems to be much happier at a slower rate. He has lost a little over a pound since we cut his food amount. I was happy with only a pound, I feared he would lose weight faster than that.

Last week his therapists came and brought some new toys. I am really excited and hope I can get him to use them on one of his good days. I will for sure document and share. The day they came he had a terrible day due to a faulty trach, which has since been discarded!! I felt so bad for Owen, after they left I changed his trach and put him down for a nap and he slept from around 3-9:30 p.m.. He was so exhausted and I felt terrible that I hadn't caught the problem earlier. He re-covered though. He doesn't have the reserve that he used too. It is hard to face that reality. But for now, Owen still smiles! I have often said, "as long as he has his eyes and smiles we can deal with anything." Thankfully he has been blessed with strong facial muscles to provide that.

Abby turns 8!

2011-04-12T09:37:00.007-06:00

Abby turned eight! She is pretty excited about growing up. I am sure she is the only one though. Lenn tried convincing her to skip her birthday and stay 7 but she wasn't going for that. She is quite the girl, she sure adds to our family. She has a huge heart and already tries to serve others. Today was her first day at Achievement Day. She has been counting down to this day. I asked her what they did and she told me they washed windows, folded laundry and read books to little kids. She was so excited to do these acts of service. This is Abby's Owen doll. When he was a baby she named him Owen so she could hold him and take care of him while her baby brother was in the hospital.

She wanted to get her ears pierced for her birthday so the day before we got them pierced. She was so excited. I took my camera in but she was not about to have it documented. She did let me take a picture after the fact.

This is her unicorn cake. She wanted white for eight and being baptized. Then she drew me a picture of what she wanted her cake to look like and picked pink and yellow to go with it.

Things Abby loves: sugar, horses, animals, family, dolls, being outside, cooking, clogging and anything social.

March 2011

2011-04-06T08:15:00.002-06:00

Bentley wrestled in March. He did great and we are happy he found success. At the end of the practices the High School wrestling coach was playing a game with them where one wrestler tries to get the other one on his back. The coach could not get Bentley on his back. I think that made Bentley's mind up about wrestling or basketball!

It was also the Pinewood derby, again he did great. He couldn't have done it without a pretty great Dad who LOVES to make these cars.

Owen and his treats from story hour. He absolutely loves this little bear. He wanted to look at it all that day.

We still had so much snow until the last week, Bentley decided to go make a 'snow Bentley'. It was so cute. He, Abby and a cousin went out to make this and when we looked out the window it was only to the waist and it was as tall as Bentley already. As I went to get the camera it fell over while Bentley was trying to add an arm. Lenn yelled out and told him to stay there and he would come help him fix it. This is how it turned out.

Landry's birthday was also in March, it wasn't as emotional as I thought it would be but we tried to stay busy. It was sad and different celebrating a child's birthday when that child is no longer with you, but we want to celebrate to keep his sweet spirit alive and with us.

Owen

2011-04-04T15:54:00.006-06:00

This is one of Owen's therapists, Dallas. Owen has loved this guy from the first day they met. Owen would close his eyes as though he was done with everyone. Dallas would say 'Owen' and Owen's eyes would pop open. He is the only one Owen would do that for for a long time. Since we have been home and he has a regular scdehule he doesn't try to block people out so much . Whenever we know Dallas is coming to visit I dress Owen in a Wyoming shirt, because Dallas is a huge BYU fan. He tells us it is child abuse to dress a child like that!! Owen is doing better than expected. The new formula has been a great change and we are grateful to have found it. He still seems to be slowing down but since the new formula we have not had to increase his medicines at all. He can't digest as much food as fast as he used to so we have cut the amount and the rate (time) for him. He is still happy but seems sleepy more often. He still loves being held and all the other things he has always loved.

Thank yous~Answered Prayers~Miracles

2011-03-20T11:01:00.004-06:00

First of all, thank you for your prayers in our behalf! I feel the strength they have brought. Since I updated about Owen and asked for prayers I felt like I should share the story of answered prayers. Before I shared Owen's update I had been praying that I might be in tune with Lord so that I would know which way we needed to go to help Owen be comfortable. I had also been praying that the doctor would be inspired as to what he needed.

I knew he needed a change and I was almost demanding a new medication. I had talked with the doctor's office and the lady wasn't telling me what I wanted to hear. She wouldn't tell me of any other medications. I was getting so frustrated because I knew Owen would feel worse. I kept praying. Finally in the calm and quiet of the a night, a thought came to me that maybe it isn't a medication. Then my mind started working overtime. I kept praying. The lady from the doctor's office was supposed to call on Tuesday. I waited and waited all the while thinking about what we could accomplish during our conversation, trying to think how we could get to the bottom of the issue. She never called, again I got frustrated. That night I realized it was a blessing that she didn't call. I had waited with my mind focused on the issue at hand all day long. That night, again in the quiet it came to me that is was his diet that needed changed. I was so excited. I felt so good about this and it was an easy change. The next day Dr. M. called and we had the best conversation about Owen and the future. She was Heaven sent!! She suggested a new formula that we are trying now. She listened and we worked out a lot of things. She is amazing. We have been blessed with a great 'Owen's team'.

The miracle is that I actually listened! I was ready to give up then I looked at Owen and realized I couldn't, it wasn't about me. I was being selfish. It was getting hard so I wanted to quit. That is when the Lord really stepped in and took over. I am so grateful for the Holy Ghost and my Savior.

This new formula is easier to digest. It isn't going to be a sudden change but hopefully we will see improvements in a week or two. I am so happy about this change. I will keep you updated as best as I can.

February 2011

2011-03-19T13:41:00.003-06:00

February 2011 was filled with snow, fun, basketball and stress. We have had so much snow this year, Bentley and Abby have had a ball playing in it. It has been a crazy winter. It snows a ton then melts, and we would get another huge storm. CRAZY!

We spent a lot of time with Owen. He didn't have a great month, but he pulled through it. (It has to be the pink neck pillow, right?) Tough boys wear pink. Even though we had plenty of days of worry, he never failed to share his smiles. Once you have been buried in the sand you have to be buried in the snow too!!

I don't know that Abby will do this again, but I am pretty sure Bentley would:).

Bentley and Abby both played Jr. Jazz this year and loved it. They both did well. Abby is still in the younger age, so really it is mass choas. The kids still have a great time.

Bentley really did good this year. He is quite the hustler. I know his picture is really dark, I haven't figured out my camera in the gym yet. He's the big man dribbling the ball down the court.

I don't know if you can tell, but Bentley is posting up in this picture. I was so proud. He didn't get the ball but he sure had good position. Abby was pretty happy with herself that she dribble the length of the floor without picking up the ball and then dribbling again!! I thought that was funny.

Lenn and Bentley decided to go skiing one Saturday, what they didn't know is that is was some free pass of some kind. It was sold out!! They made one run and decided it wasn't worth the wait in line for anymore runs that day. They came home, Bentley was disappointed because he has loved learning to ski. Lenn came in the house and told me why they were home so early but we couldn't figure out what was taking Bentley so long to come in. We figured he was out sulking. Lenn yelled outside asking if he was okay and he said he was fine, but after awhile we had to go find out what was going on. We were so wrong!!! Bentley was out making the most of all the snow. He was out skiing down any hill we had!! What a kid, who couldn't love him?

Owen's update

2011-03-15T07:41:00.005-06:00

I have promised an update to many, I guess today is the day.

We love our little man so much and this update isn't one I have been looking forward to. Owen is a fighter though. I cannot believe how much of a fighter he is with such a weak body. After he was named Owen, we found out that in Irish Owen means young fighter. I think his Daddy picked the perfect name.

In February 2010, Owen started needing prune juice to help his bowels work well. The juice worked great up until the week before Thanksgiving. Since then we have been using a medication and it worked great through the holidays and his birthday, (what a blessing). The last month or so his bowels seem to be slowing a little more, needing more medicine to work properly.

His heart rate and O2 sats have been great thus far. I truly believe we are watched over each and every day. I know Owen is never far from his Heavenly Father and that he feels of His love.

We have been very blessed to have some great doctors in our lives. They are helping us keep him comfortable with the right medications.

I pray for his comfort! He amazes me each and every day. He still smiles and interacts most of the time. When his medicines aren't at the right dose he is sleeping and 'bored'. I told Lenn one day, "Owen hasn't felt real good today". Abby said "Yeah, he has been bored all day." It was so cute that she noticed her little brothers' feelings when he can't say a word.

On those 'bored' days he is docile and doesn't interact a whole lot.

As of right now, I don't think he is in pain (another huge blessing). I think his body is just working overtime on the little things we take for granted.

With that being said I would like to ask you for prayers on Owen's behalf that he might have the comfort needed at this time and that the doctors will continue to be inspired as of what he needs.

My heart breaks knowing he is a bit closer to Heaven but I know his little brother and Father in Heaven will gladly receive him when that day comes. I don't know how long we will have our little Owen, he has surprised us many times. For now, we will continue to cherish each and every day that we are blessed with.

The big 35!

2011-03-10T08:18:00.010-07:00

Lenn's big day was on Tuesday. We went on a date, that is huge for us. Our dear friend watched Owen and we went grocery shopping and then to lunch. We had a good time even though we had to throw grocery shopping in there. Then we came home so Lenn could go to work in the basement working on stairs! Such fun.

That night we had a nice dinner with Bentley, Abby and Lenn's parents. It was a great day, Owen had a good day and that makes everything else go well.

Lenn's horseshoe cake. His brand for the cows is a horseshoe so it makes it kinda fun.

Lenn tries to put on a tough front but he really is a softy. He does so much for me and our children. He can fix about anything he wants to and if he can't he figures out how to. He comes up with some crazy ideas that turn out to be incredible.

Thanks for everything Lenn. Happy Birthday! We love you.

Works from Heaven continue still

2011-02-22T18:34:00.009-07:00

Last Friday morning I realized that Owen's alarms hadn't gone off like normal through the night. Then I saw his tubes were pretty dry. I looked down and saw that his humidifier was off. Not good! I immediately unplugged it and plugged it back in. Nothing!! Oh great, was my first thought. I got the phone and called the equipment place in SLC hoping the gal was in that we work with. Yes!! She answered the phone, which is pretty rare for her to answer when I call.

She is amazing. I told her our dilemma and she was off to work getting us a humidifier by the next day. That was great and all but Owen shouldn't be off his humidifier for more than 8 hours at a time, but that was the best we could do at the time.

I then called Lenn to tell him what was going on. He had to go to Rock Springs that day. We both started calling people to see if there was anyone in SLC that was coming back the same day. I had no luck, but Lenn had a feeling to call a cousin that he rarely talks to. He asked him if he was going to SLC, he said no, but their Aunts were down there picking up a grand daughter. (There is hope!) Lenn got off the phone and called his Aunt M. She said she was happy to pick it up for us and asked for the address. When Lenn told her the address she could not believe it. His Aunt was literally one block away from the equipment place. She picked it up and brought it that night. AMAZING, if you ask me.

When someone says miracles no longer exist, they just aren't looking. We have been constantly watched over since we have been home with Owen. It is simply amazing to say the least. I know the Lord's hand has been involved in all of it too.
Don't get me wrong, it hasn't been a walk in the park. We have our share of chaos and stress, but along with the chaos and stress we have been carried and watched over. Miracles do exist! We just have to be watching for them.

Our January part 2...

2011-02-21T21:26:00.001-07:00

Lenn decided this year he was going to teach Bentley and Abby how to ski. They were so excited to learn. They are doing great and loving it. Every weekend they beg their Dad to take them skiing.
Here is a picture of the ski mobile. This car has been to almost every ski resort in Utah and Lenn is pretty proud of his good ol' metro.

Abby gave Owen a CTR ring for his birthday and he loves it. He is so funny, when you put it on his finger and then hold his hand up to show him, he smiles so big.

I can't get enough of this smile. I love it!

~Happy Valentine's Day~

2011-02-14T16:02:00.003-07:00

I was going through pictures and couldn't resist posting this one today.

Happy Valentine's Day!

Our January....

2011-02-13T12:18:00.008-07:00

January started out fine with Owen's birthday, then it hit and it hit hard! Lenn had been battling sickness for awhile but it was just an annoying cough. The day after Owen's birthday it hit me and it was a bad one. I haven't been that sick in a long time. The day after I went to the doctor I sent Bentley with Lenn thinking he had a sinus infection. Boy was I wrong! The news we have dreaded for three years came. Bentley had RSV. We were so worried that Owen would get it. Bentley had been ordered by the doctor to stay in his room until further notice. Poor kid, but he did it without complaining because he knew he had to protect his little brother. He was a champ. He stayed in his room and Owen got just about everything else but not RSV. We all looked lovely with our masks. I would get a mask and a gown on to take care of Bentley then come out of his room, wash up and go get a new mask to take care of Owen. I felt like I was back in the ICU. We made it though, whew!Luckily Lenn's sister had this tv/vcr. Bentley called it a lifesaver. I am not sure how many movies he watched but he did get his homework done. (His room was in transition, he doesn't really sleep on the floor.)Sick Owen still gave us his smiles.Abby and Owen were watching Beauty and the Beast. Abby came over to comfort Owen during the wolf part. If you look close, Owen is just laughing at her. I thought it was pretty cute.
Owen got a digital photo frame and a wall cling with him and Landry for Christmas. He loves them both. He can't wait for his frame to be turned on in the mornings and will watch it forever. Once in awhile I catch him grinning and I watch his eyes go from his frame to his picture with Landry. He loves his family.

Gayles' Birthday Trip

2011-01-12T20:03:00.008-07:00

Friday 12-17

For Gayles' birthday I had a few things up my sleeve! First of all, while she was away celebrating, I stayed home and slaved over a cake... Mr. Crocker made my wife a cake! It didn't turn out to be what I had imagined in my mind, but when you have a flower and football cake pan to work with, what do you expect? Enough of the cake. I got online and bought some Christmas concert tickets, yup, I bought them. I could be the only one in a drawing and the person drawing the tickets would make up a name! So away to Salt Lake we go!

Had a hotel room that ruled. Bentley and Abby had their room, Gayle and I had our own, and Owen got the entire living room. Plus a kitchen for the nightly popcorn ritual to boot.

Amy, one of our favorite nurses, came over to babysit Owen. Earl was leaving town and Marquelle got beat to the punch. We met some really neat people in our extended stay at the hospital.

The conference center was amazing!

David Archuleta was amazing too. I had to keep my inner teenage girl inside and not squeal. Mom told me before we left that no one was to squeal inside the conference center. President Monson and President Uchtdorf were at the performance. It was neat to see how quiet 22000 people can get when the Prophet walks in.

Saturday 12-18

Owen all dressed up and no where to go..

Temple Square and the amazing lights. I was thinking the whole time strolling around how I could get my yard to resemble that... A couple things came to mind, I need a couple trees and a larger budget.

The kids at the reflection pond.

Had to go into the visitor center and get a picture with Christ. The feeling you get when you top the ramp and see Him is pretty neat. It was standing room only and my crowd rash was growing ever so large so that was our last stop. Happy Birthday Gayle, sorry it took so long to put it on here. You will never see a picture of the cake on here, but oh believe me, it was something to behold!

More Birthday Pictures

2011-01-08T15:22:00.004-07:00

Here are a few more pictures of Owen's big day. He was happy most of the day. I think he knew it was HIS day. Whenever we would say 'happy birthday' he would light up.

We have a tradition in our house that the birthday person gets to pick what they want for dinner. This year I thought Owen should be able to do this too. Of course I had to choose for him, but since Owen is on an all liquid diet I thought it would be fun to have fruit smoothies for dinner. Fun, right? Well is was until we were all freezing and decided to add a grilled cheese sandwhich to the menu. Lenn figured Owen should have had a summer birthday!!
It was a lot of fun and we are so grateful we got to celebrate Owen's 3rd birthday with him.

Happy Birthday Little Man and Angel Mercydez

2011-01-03T21:19:00.007-07:00

Well here is little mans' cake.. Gayle spent her usual, a lot of time and energy, and pulled off another great cake.

Here is the birthday boy! Hanging out with woody and eyeing bullseye.

Gayle sending the smiley face balloon to Landry.

Abby writing on Mercydezs' balloon.

Three balloons for three years, trying to cut through the fog.

I will post more pictures when I get time and the turtle internet is feeling frisky. Three amazing, stressful, sleepless, miraculous, wonderful, heart wrenching, learning years. Most said he wouldn't make it out of the hospital. To those, happy third birthday Owen..

Light Contest

2010-12-19T18:12:00.003-07:00

I have taken up a new hobby this year.....hanging, stringing, pretty much buying Christmas lights. Rocky mountain power employees I will leave my address later in the post for thank you notes.. I got a hunkering to put up lights this year and boy did I. Now the participation part, all of you get to guess how many twinkling things there are and you might win a prize.

This is one of my greatest creations for the year, my stable and star! Had to get the true meaning of Christmas in my decorations this year.

This picture was taken before I got my deer and nativity set up.

Here is the final view.

I have to tell the story of buying the deer. Allwest had a trencher that broke down in front of my house this fall. Being an eyesore, the ole ditch witch trencher was going to get into my decorations. I bought two male deers, some white lights for reins, and some motion lights to go around the tracks. I was looking for a santa to put in the seat and some presents to put on the roof of it. Long story short, it was good that I had to take some calves to Riverton. Cause when I got home from that trip the allwest boys were here working on it and ended up taking it home. So no trencher santa sleigh for me this year! Now I have two male deers! Had to take one back and get a doe, really don't want to send the wrong message in my front yard..

I am adding a few more every day but I am doing the competition as to the lights you see in the pictures. I am working on something for Landry. I guess to be honest I was really hoping he would see the ole house from heaven...

Thanksgiving

2010-12-06T22:35:00.004-07:00

Owen's Thanksgiving story hour. It was the week before but isn't he cute in his pilgrim hat?All dressed up and nowhere to go!! We spent Thanksgiving at home with just us again. We feel good about being hermits to help stay healthy. Unfortunately I only got pictures of Owen because Lenn was feeding the cows. Bentley and Abby were out sledding.Lenn has been working on lights for quite sometime. We restrained ourselves and held off lighting them until Thanksgiving night. They look great Lenn, thank you! The nativity came late so we will have to add that later.

That night we also put up the tree and decorated. Notice Lenn at the piano, no he doesn't play. Well he didn't play until Thanksgiving day when Abby taught him how to play 'Happy Happy Birthday'. Good job Lenn and Abby. Now he can play two songs. It was fun to listen to him play as we decorated the tree. Owen was amazed by the lights as always.

This year I decided to have a competition, that is one thing we do well, compete. We all made thankful lists and saw who could come up with the most. Bentley beat us all by a lot. I was impressed I was sure it would be between Lenn and me.

Some of the things on our thankful lists: people who got us home, people who help us stay home, good friends, Owen's equipment and doctors, family, the gospel, prophets, animals, our home and food. These were just a few since we all had around 100 except for Bentley. He had 132!! Good job Bentley!!

We do have a lot to be thankful for. We have had so many little miracles that we probably do not even recognize until later. For example, when we decided to trach Owen we were told he would spent most of the winters in the hospital. Well, he is almost 3 and he has spent one night in the hospital (knock on wood)! That is amazing! That night was to watch him after he had his adenoids out, ear tubes placed and a scope of his trachea. We are not lucky we are blessed. Another miracle is; almost every time Cokeville is out of power we still have power. We have only been out of power two times that were for a longer period of time. Even then we were able to stay home until it came back on. Today I may have found out one reason why this happens. I was talking to a sweet friend who told me whenever she is out of power she prays that she will stay powerless if Gayle has power. That is a friend!! Thank you. I know many prayers are said on our behalf and I would like to thank you for them. We feel blessed to have you all in our lives.

Owen's Big Boy Bed!

2010-12-01T07:33:00.006-07:00

We are so blessed in so many ways, and another huge blessing came a few weeks ago.

Abby was playing and drawing with Owen while his new bed was moved in and this is the finished product. I think she did great and the cute thing is that she kept giving him choices and then she would color or draw his choice.
As I mentioned above, this is a huge blessing. I had been working with insurance companies and doctors to get Owen a new bed. What a pain, NOT on the doctors part! I heard others had had a hard time with this but I didn't realize the extent. After I got all the paperwork in we got a call from a girl Lenn went to school with. She works at the Evanston Hospital. She was asking us if we wanted one of the beds they were getting rid of. She suggested that we get our names on one just in case. They had asked us before but it was right after Landry passed away so we did not do anything about it.

We got the bed. We didn't realized how heavy it would be until Lenn went to get it. It took six men to load it in the truck. We weren't sure what to do now. We wanted to wait and see what the insurance company said, but we had to do something with this bed. We decided to bring it in and use it for the time being. We had help from six high school athletes, one of Lenn's tough friends :) and Lenn's Dad. It took all of them and Lenn's one arm to get it up on our deck and into the house. Thank you to all who helped. We really could not have done this without you.

A few days ago we got a letter from the insurance company telling us the bed was denied. We would have been devastated but instead we were thankful to have had a back up plan. Thank you again. While bringing the bed in, they had to tip it on its side and doing that did something to the bed. It did not work right. After all that work, now only the one side would lift. Lenn did a little thinking and then got under the bed with his helper Bentley. He was able to fix it and it is good as new. Thank you Lenn. He can fix just about anything!
Owen in his new big boy bed. A dream of any almost three year old boy, to have a bed that is a machine!! He likes it, mostly because he can watch TV from bed now.

The bed is in great condition and clean. The mattress even impressed Owens' physical therapist.

We are so thankful, he was almost touching both ends of the crib. A normal bed probably would have been the end of my back. Again we have been watched over and taken care of.

Bentley's Solar System

2010-12-01T07:25:00.003-07:00

Bentley had to make a solar system for a school project and here it is. This ended up being a family project. The most impressive part is that is was done before it was due!!
Bentley was so funny he studied the pictures of the planets and then wanted to paint his planets identical to the pictures. That just doesn't happen in our household! He did a great job though!

A little of everything

2010-11-18T21:56:00.005-07:00

I started on this post last night but got too tried and went to bed. This morning after checking a blog these pictures mean even more to me now. We have been following the Coleman's since there story ran on KSL. They are an SMA family so we feel somewhat connected to them even though we have never met. Their sweet Jonas was called back home to his Heavenly Father last night. Our hearts break for them. It is so hard to have a little one go. So please as you say your prayers, keep this family in them.

That being said...I love my children a little more today. Sadly I still have to be reminded that no one has a guarantee of tomorrow.

I take new pictures each fall. This year, for whatever reason, it got put off until we almost missed it. I told Bentley and Abby that we would hurry if they would cooperate. I got the above picture!!! Maybe we need a lesson on the meaning of cooperation?? I think it turned out cute anyway.
Owen can make the funniest faces. He makes us laugh all the time.

My sweet boy, red faced and all. This is our snuggle time almost every night. I don't love pictures of myself but I knew I would be devastated if I waited too long to get one, so I had Lenn take one. I am grateful that I did.

~Halloween 2010~

2010-11-02T13:56:00.005-06:00

We carved pumpkins on Friday. Abby was determined to do hers by herself and she did. She only wanted help once and I think she did a great job. Owen enjoyed the whole pumpkin experience this year too. He didn't mind his hands in the pumpkin goo and then he picked his pumpkins face. I drew different shapes on paper and then he chose the eyes, nose and mouth. He was pretty excited when each one was done. He would give us an approval smile.

Bentley is always bound and determined to carve a pumpkin that is above the easy level. Once again he did it. You cannot see it very well in the picture but it is a little monster and it turned out really cute. He did a great job. I would not have the patience, that is why Owen got the choices he got!!

Our annual jack-o-lantern pizza. This year we did not do all of our normal traditions because Lenn and Bentley were shipping calves and the day got away from us before we new it. Abby usually goes with the boys to do ranch stuff, but this time she decided not to. Friday night she said, "I know, how about I stay here with you and we can decorate." So cute, but pathetic that the little girl has to decorate for Halloween the weekend of. Pathetic on my part, but it was cute and she had a good time.

Abby the unicorn, Owen the giraffe and Bentley the cowboy. We had a fun time trick-or-treating and came home and went to bed.

Now bring on the Christmas music....

So fun!

2010-10-28T13:55:00.003-06:00

Story time came to Owen today. We have a library in town and they always do such fun story time hours. One of the sweet librarians' decided she wanted to bring it to Owen each week. She is so thoughtful.
Today she read a cute Halloween book and then colored this scarecrow for Owen. We have been giving Owen more choices lately (he chooses with his eyes). She would hold up two colors and he picked the colors she used with his eyes. It was so fun to watch his eyes light up each time she finished coloring an area. Thank you. Speaking of choices, Owen chose his shirt again today. It was between his Wyoming shirt and a bright red and blue shirt. I even switched them to make sure, and yes he picked his Cowboy shirt!! Dad is going to be so proud!!

~six months~

2010-10-11T12:59:00.005-06:00

I mentioned we would do something on Landry's 'would be 6 months old" day on the other blog. I wanted to post on our family blog because it is as a family that we remember our little angel. The plans intended for this day have been put off, probably until his first birthday for several different reasons. We improvised and had a good day anyway.
We went to the cemetery to visit and release balloons and then we went to eat in Garden City. We got back too late for cake and ice cream so we put that off until the next day.
If you look close Owen is actually smiling!!
Six balloons for six months for Landry. We always have to get extras for the other kids.Bentley releasing his balloons. We watched these balloons until they were less then a spec. Actually, everyone else did because I lost track of them pretty quickly!
We can't celebrate anything at our house without a cake. Lenn figures Landry is the only one who gets a cake for 6 months. I am not an artist but that is supposed to be a dragonfly on there.

What a good guy! Go Jimmie Johnson

2010-10-05T11:36:00.003-06:00

10/01/2010
"Cookies for Kids' Cancer Wins Additional $20,000
By Earning the Most Votes in Samsung Helmet of Hope for More

Jimmie Johnson Foundation surprises 2nd-place Gwendolyn Strong Foundation with an additional $20,000 grant after reading email exchange between the top-two charities

CHARLOTTE, N.C. (Oct. 1, 2010) – Cookies for Kids’ Cancer became the deserving winner of an additional $20,000 grant after earning the most votes in the Jimmie Johnson Foundation Samsung Helmet of Hope for More campaign.

Four-time reigning Sprint Cup Series champion Jimmie Johnson revealed the winner on Speed Channel’s “Trackside Live” program Friday evening. Johnson also surprised second-place finishing Gwendolyn Strong Foundation by announcing that it would also receive a $20,000 grant, a decision made after Johnson and his wife Chandra received an email exchange between the top two charities.

“We were part of an amazing email exchange between Cookies for Kids’ Cancer and the Gwendolyn Strong Foundation that took place after the voting contest ended. Each charity could see their voting percentage tally online, and it was clear the contest was between these two organizations. On their own, they decided that regardless of which charity won, they would split the $20,000 grant,” explained Johnson. “Here are these two families who are each trying to raise money and awareness to help find cures for diseases that their own children are battling, and both of them are willing to give away half of the grant to help the other work toward their goal.”

“When we saw what a selfless decision that was and the sacrifice that each was willing to make, we really wanted to step up and do what we could to help each of these amazing organizations,” added Johnson.

The thirteen Samsung Helmet of Hope charities each received a $10,000 grant and placement on Johnson’s Sprint Cup Series race helmet for the Oct. 10 event at Auto Club Speedway. Each charity that elected to participate in the Helmet of Hope for More initiative then had the opportunity to Hope For More and win additional funding through the online voting contest.

Over 125,000 votes were cast during the three-week voting period, with Cookies for Kids’ Cancer and the Gwendolyn Strong Foundation earning more than 50% of the total votes. The two exchanged the lead daily throughout the event and were within a few hundred votes in the final days.

“This was the first year we had the Hope for More contest and we couldn’t be more thrilled with the way it turned out,” said Chandra Johnson, co-founder of the Jimmie Johnson Foundation. “We weren’t planning to award grants to two charities, but these two organizations put so much time and effort into the program, especially considering the families of each are battling to save their children’s lives. We are proud and humbled that we are able to help with their missions.”

Cookies for Kids’ Cancer was founded by Gretchen and Larry Witt when their 2-year old Liam was diagnosed with a deadly form of pediatric cancer called Neuroblastoma. Their family learned quickly it is a cancer that only about 30% of children survive, and that pediatric cancer is the leading cause of death by disease for children under the age of 18. Cookies for Kids’ Cancer’s top priority to develop new and better treatments for the children battling cancer around the world.
The Gwendolyn Strong Foundation was born out of Bill and Victoria Strong’s firsthand experience with their precious daughter, Gwendolyn. Gwendolyn was born perfectly healthy in October 2007, but was diagnosed with the terminal disease Spinal Muscular Atrophy (SMA) Type I at 6-months-old. The Strongs are personally and passionately dedicated to leaving no stone unturned in raising awareness about and funding research for SMA and supporting families who are impacted by SMA and other life-altering diseases." The article can be viewed and www.JimmieJohnsonfoundation.com.

Thank you for all of you who helped vote. We love and appreciate each one of you.

If I can do this...anyone can!

2010-09-27T11:41:00.005-06:00

These are legwarmers for babies. I made them in 25 minutes. If I can make them so can you.
I made them for a friend who started with a goal of 500 but now she is shooting for 1500 legwarmers to donate to the PICU at Primary Children's Hospital. That is where her little Makenzie spent her last days. Makenzie is her inspiration for this project. She is doing an amazing job in behalf of her little angel.
When I was out looking for socks they did not have any women's so I went to the girls section and thought I would try these. After I bought them I thought of all the newborns who end up in the PICU. My niece for one was only 7 weeks old. I think it is so hard for the parents to see their baby in a diaper only. With these legwarmers it will give those parents something to smile about.
To get the pattern and find out more visit her blog http://www.kendraandryanwebster.blogspot.com/.
If you don't sew at all you can buy them and donate too.

Thanks for your help. Also don't forget to keep voting to help fight SMA http://www.voteforsma.com/. Vote for the Gwendolyn Strong Foundation. Vote everyday until the 29th.

Owen's summer 2010

2010-09-23T10:50:00.009-06:00

I promised a long over due update on Owen..here it is. As I was going through the pictures from this summer I realized there were too many to post individually so I hope you can see them all.
This summer Lenn was gone most of the time so when he was home we decided to make the most of it. Owen has been healthy but you never know what tomorrow will bring. We wanted some family memories so we now have a few.
Owen is doing as well as he can. They are still surprised when we go to Primary's to see that he is doing so well. He does not have the reserve that he used to. He panics when the vent is disconnected for more than a few seconds. He cannot move his hands or fingers anymore. He can still barley move his ankle but his facial expressions are more than amazing. He gives us kisses, when he is in the mood. He is still such a blessing in our lives, and I would not trade him for the world.
1. Owen touched the temple. We had been wanting to do this and Owen was having an okay day so off we went. (After that he seemed to be back to normal, he so has our number.) 2. Owen petting a baby goat. 3. Owen saying hello to his Dad after a long time of being gone. 4. He made it to a few of Bentley and Abby's softball games. 5. We got brave and took Owen to a movie. Yes, a movie and he loved it, then we went to eat and hurried home.
1.What big sister can resist in dressing up her little brother. He loved the flower in his hair, or maybe it was the fact that Abby was laughing and giving him all the attention she could. 2&3. We went to the park and Owen loved watching the leaves rustle in the trees. 4. Abby let him help her stir her cup cake mix. He was not real sure about that. 5&6. Bentley and Abby were playing with the camera while I was holding him and the pictures turned out great. 7. Grandpa Johnson loves playing with Owen and Owen loves it too! 8. I can just imagine what he is thinking with Abby and Olivia kissing him at the same time. 9. We even took Owen to the Demolition Derby. He loved the noisy cars!
1. Owen loves Bentley. 2. Owen got used to his new stander and loves being in it now. 4. Owens' eyes. We don't get to enjoy these as much as I would like so I love this picture. His eye lids are getting weaker, especially his left one. In this picture you can't tell. Aren't they beautiful? 5. Owen loves to watch us help him color.

1. Kynlee kissing Owen's hand. Owen's cousin loves him and is beginning to show it. When she comes she wants to get to baby Owen. One night while she was drinking her bottle she had to pat and rub Owen's hand. It was so cute. 2. Owen has learned to show off his front teeth and he thinks it is funny. 3. Kynlee asking Owen if he wants "more" of her drink. 4. Owen looking to see if his lights are on. 5. Owen giving his best smile.

SMA Blog Party

2010-09-16T07:33:00.007-06:00

We are invited to join the SMA Blog Party, and you are too! It sounds crazy to have Party and SMA in the same sentence. Who would want to celebrate the number genetic killer in children under the age of two? Well no one is celebrating, just trying win another contest to raise money for the cure and raise awareness.

Our SMA story...
It started January 3, 2008 when Owen was born. He couldn't cry, he couldn't move and no one knew why. We were in shock, we were heartbroken and could not believe what we were now experiencing.
They drew Owen's blood, did CAT scans, EMG test and in the end found nothing with an exact diagnosis. The blood tests came back negative or unconfirmed. We had a indescribable feeling that we should trach Owen, so he is still with us today.

Two years later on March 30, 2010 Landry was born. He was a little stronger but still very weak. We chose differently with Landry. We chose to bring him home to love and cherish, rather than have our family spilt and him being poked and prodded. Some people don't agree with our choice and it may have been different if we had any answers with Owen but we feel good about the decision we made. Landry earned his angel wings on April 21, 2010.

Just recently we spoke with a genetic counselor and the neurologist and to put it plain and simple they just don't know. This is motor neuron disease and it has SMA all over it but it is an unidentifiable gene. Which means they do not know where to even begin looking for the mutation. The neurologist thinks it is x-linked SMA, very rare and very new. The x-linked gene was found the November before Owen was born. His mutation was not found on that gene. He more than likely has a form of SMA that has not been discovered.

When I think of that it makes me want to do all I can when I hear of these contests to raise money for research funding. If they can cure the more common forms of SMA than that brings them that much closer to find a cure for all the rest.

In the end, this disease has given us two beautiful children that have brought us so many blessings and heartaches. It has changed us forever and made us different people hopefully for life. We cherish more moments. We have more empathy for those going through hardships. We love each day just a little more. We try harder not to take everyday for granted. We love more. We believe more. We are closer.

That being said please vote for these precious babies and these families that endure this. What more of reason could you need? Look at these boys.

PLEASE VOTE: It’s really this simple –>
1. You can vote once EVERY DAY from now until September 29th at 5 PM EDT
Go to www.VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
2. That’s it! It’s really that simple
3. Don’t forget to add your name to the www.DailyVoteReminder.com list so you don’t miss a $20K vote.
4. And…don’t stop there — SHARE!

Thanks in advance for the votes.

It is here!

2010-09-15T13:04:00.008-06:00

The headstone finally came and is in place. We could not be happier with how it turned out.

The picture of Landry is amazing, they did a great job on this. And yes, those are Landry's footprints. Aren't they cute?

Ten years ago...happy birthday Bentley

2010-09-14T10:00:00.001-06:00

Customize a free photo slideshow

-Check this out-

2010-08-29T18:22:00.002-06:00

My sister-in-law called me the other night to tell me about a family on the news. This family has a BEAUTIFUL little boy just older than Owen with SMA. At the time they were expecting a baby girl who would also have this devastating disease. She was born a few days later. If you want to see the video it is on www.KSL.com, the story is called 'Family prepares to face rare disease for a second time.'
This family seems amazing!
An organization is doing a carnival in their behalf to raise money to help them with medical costs. They will be updating their blog with more info., if you can help this family visit their blog. www.coleman2family.blogspot.com.
It seems crazy, but whenever we hear about another family in similar situations we feel so connected with them without even knowing them.

I know I haven't done an Owen update lately, but I promise one soon. (Just don't hold your breath.)

First Day of School

2010-08-24T12:34:00.003-06:00

Bentley and Abby went to there first day of school yesterday. I cannot believe summer is gone. Bentley is excited because his teacher like field trips. Abby is excited because she get the same teacher as last year and she spoils them.

Proud Moment

2010-08-20T17:30:00.004-06:00

Yesterday at the fair Abby showed one of our baby goats in the open class. She was supposed to be in the unusual pet show but they put her in with the other goats. That was all good except the other goats were meat goats and Abby's was a 6 week old fainter. Needless to say there was a bit of a size difference. She did great!

Bentley showed in showmanship yesterday. He did a super job. Lenn and I were so proud of him. He was the grand champion junior showman. I was so excited for him that I could hardly go to sleep last night. Right before he went into the ring I told him the better he did the more premium money he would get. Well I lied to him, not meaning to of course, but here they gave a blue ribbon and a bucket for the grand showman. (Oops!) It made him smile at the judge anyway, right??

Today was the market classes. Bentley took third in his class, which was great. While he was showing he was in the first place position for a bit, then to second and at the last minute she switched him to third. I think the judge took the longest on that class deciding which one was better. We were actually shocked at how well Wilma did, because in July she decided to become anorexic for most of the month. We thought she would be a lot further behind the other lambs.

Bentley did great for his first year!

Getting Ready for Fair......and the Petting Zoo!

2010-08-18T17:56:00.009-06:00

Lenn decided he would be brave and give shearing Wilma a shot!! He did a great job. Bentley shows her on Thursday and Friday. I think he and I are both excited to be done and poor Abby is so sad that Fred and Wilma will be apart after tomorrow. (Fred is Wilma's friend to keep her company.)To keep Abby's mind off of Wilma not returning home we told her she could show one of our fainters in the unusual pet show. She is pretty excited to show Daisy, but she can't get her to lead very well. She got her all washed today and now she might decide to show one of the kids so she can pick it up and carry it if it won't follow her. Abby is hilarious, "I just wish I would have worked with her all summer," she says.

Since Abby wanted to show a goat our back yard has turned into the Johnson Petting Zoo.

Bentley's 4-H Pre-show

2010-07-30T20:13:00.008-06:00

Doesn't this look fun!! After two hours of shearing with dull clippers we finally convinced Uncle Bill to stop and wait for some sharp ones. Poor Wilma had this hair cut for about a week waiting for clippers. Thanks to Uncle Bill for shearing and getting Wilma ready for the show.
Bentley had a pre-show that I dreaded but it ended up being really helpful. He did well, and got 2nd place in the juniors. They judged on showmanship and for his first time I was impressed.

New Blog

2010-07-30T20:08:00.003-06:00

I guess I am ready to put myself out there. I am really not one to make my feelings a public thing but I have drawn a lot of strength from others out there that blog about there angel babies. I have also heard that doing something for your child such a blog can help the mending of ones heart. I figured I could try that one out. Our new blog is http://www.simplyamiraclex2.blogspot.com. There is a link on the side of our blog above Landry's picture.

Gardening Help???

2010-07-15T22:12:00.002-06:00

So I have been wondering WHY my garden has not been flourishing.
I just can't put my finger on it! Any suggestions?

Happy Independence Day

2010-07-04T12:42:00.008-06:00

This year our 4th of July celebration was a little different. Lenn was working and so it was up to me to pull something off. I decided I would try to get to the Woodruff parade (yes, I have lost my mind). I figured I was setting myself up for failure, but I was determined to try. I have always had the intention of not letting Bentley and Abby feel as though they missed out because they have a special brother. So..my father-in-law said he would help me load and unload Owen.
I got up early Saturday morning, (after not really sleeping, wondering how I would pull this off), and got everything ready. We were even ready 30 minutes early!! Major WOW around here! We headed out the door to wait for my father-in-law and Bentley says 'let's you and me try'. I say okay and to our surprise we got him in, not near as smooth as Lenn would. Sorry Owen. Then my father-in-law comes up and he is still in his work clothes. I figured Grandma and Grandpa would go too. I asked him and he said no they weren't going. So we got in and off we went. We weren't too far from the house when I was ready to turn around and go back home. What was I thinking going off alone??? I didn't turn around and we made it to the parade even early enough to have a perfect parking spot.

Owen seems to have the perfect spot out of the sun. Only in a small town parade would you get this one!!

I was taken back a bit though by our parade neighbors, as the horses with the American flag approached, not one of them got up to salute or show any kind of respect for the flag. The more I think about it the more upset I get that I did not say something to them. Some people!

Anyway the kids loved the parade. Bentley and Abby love anything that has to do with candy being thrown at them.

For our fireworks display, well lets just say we REALLY missed Lenn on this one. He loves fireworks and putting on a show. All you wives that complain about the hunting budget, well ours is the firework budget. But he loves it and we love watching.

Bentley thinks he is the man of the house when Lenn is gone so he pulled out all the fireworks and he and I lit the fireworks. We mostly did Utah fireworks but we did do a few big ones too.

Owen again had the best seat. I moved the table over by the window and laid him there where he could see all the fireworks without the mosquitoes and wind.

We had to take a break to enjoy the beautiful sunset.

The camera did not do justice to the color and it still looks beautiful.
Grandpa, Abby and Bentley showing Owen their sparklers.

Communication

2010-07-04T10:38:00.006-06:00

People (mostly doctors) ask us if and how Owen communicates with us. Now look at the pictures below and tell me if you can interpret what Owen is telling us. Keep in mind he loves these two people.

Do you see any differences?

This is Owen's new stander. In the first two pictures it was his first time in the stander and he absolutely did NOT like it . His therapists (which he loves to come) tried anything and everything to get him to open his eyes or smile, not a chance! Even after we took him out and laid him on the floor, no smiles. In fact, I have never seen anyone try so hard not to smile as Owen did that day. He was mad and he was going to let all of us know that.
After that day, he has started to enjoy his time in the stander. He likes to watch us help him color or draw.

Owen loves us to hold him and he tells us that too. I usually snuggle and sing with him and Lenn plays the wii with him. He loves both.

Then there is this little face. It started out when he was starting to get sad he would turn down his bottom lip and begin to cry. It was so cute we could not help but laugh. He soon caught on to that and now he will do it for attention too. When we react, he smiles, then we turn down our lip, he grins then turns down his again. It is hilarious!

So the conclusion we have come to is that Owen can definitely communicate his needs with us.

BASEBALL

2010-07-03T20:33:00.002-06:00

In June Bentley played softball and Abby played t-ball. They both loved it. They played last year and this year they could not wait for it to start.
Bentley has become quite the player. He is a little hustler. He catches on to sports pretty quick. Abby has been counting down to t-ball since January. After her last game she said, "Oh great, now what am I going to do ALL summer"! She says the funniest things.

Touching the Logan Temple

2010-07-03T20:17:00.002-06:00

Owen really was happier than he looks in this picture.

Our Stake President challenged every child in the Stake to touch the temple so they might feel the spirit and have the desire to one day return. So last month we decided we had better get that done, and we did. It was a nice day and Owen was doing okay.

FYI: Owen is feeling much better these days. It turns out that he wasn't tolerating what we were feeding him because it was too concentrated. Thanks to a great friend we figured that out and hopefully he will only improve from here.

~Live, Laugh, Breath~

2010-06-17T15:35:00.002-06:00

I have been meaning to let you all know about this event but have neglected to until now. This event is in honor of a little girl named Makenzie. Her parents are making sure she makes a difference. She was diagnosed with SMARD, which is in the SMA family, and passed away last December. They are putting this event on to help raise money for research and find a cure for this disease. For more information please visit www.livingformrw.blogspot.com.

Memorial Day

2010-06-01T19:53:00.008-06:00

Memorial Day was definitely different this year. The weather was crazy and normally I would not have cared because growing up we always knew it would rain on Memorial Day, but the whole week before? Now that is just crazy!!

We wanted to have Landry's grave decorated the whole week before. It did not happen that way. It was either too cold, windy, rainy or all of the above! We can handle crazy weather, but with Owen we have to be more careful. We finally battled the weather on Friday and got it decorated. Then we decided since we were out of the house with Owen to go on to Logan and have lunch. We had a good day and everything went well.

This picture is perfect~Bentley worrying about something and Abby without a care in the world!

Owen loved watching the tractor wheels turn in the wind.

We picked up some balloons in Logan for Landry to add to the decor. One for each week.
Here kitty, kitty! (It's an inside joke) On our way home we saw this baby skunk crossing the road so Lenn got out to get a picture. It is too bad they have to smell so bad. It was cute enough that Lenn wanted to catch it and have it de-scented.

~Uncle Earl Stops Again~

2010-05-25T16:47:00.002-06:00

Earl was headed home again so he stopped to see us. Owen loves this man.
I finally convinced Earl to smile for the camera.

Somewhere we never thought we would be

2010-05-18T10:26:00.007-06:00

On Mother's Day we decided if the weather was nice we would take a picnic and go visit Landry's grave. The weather cooperated so we went. Owen does not love his strolleror the wind so his day wasn't the very best, or maybe he was sad because that has been going around at our house. Bentley and Abby had a ball. I wish I could have just a little bit of their strength and faith. They know exactly where Landry is and seem to be fine with that. Abby gets sad sometimes and cries, but Bentley says there is no reason to be sad anymore!! Wow, he amazes me! Anyway, the wind had been terrible the week before and had blown flowers off of graves. Bentley and Abby ran around gathering up flowers along the fence and brought them to Landry's grave. (I am not real sure how I feel about robbing flowers to decorate his grave, but they were happy.) They split up the the flowers so they could decorate their great-grandma's too.Lenn bought two little solar lights for Landry and the Dragon fly in the middle is from a good friend in Cokeville. Funny thing is that she wanted to just leave it there and not tell me who it came from but when she got home and put one together for her grandma she realized she didn't turn Landry's on. So she had to call and tell me it needed to be turned in order to work.

Lenn perfecting the placement of the lights. They had to be perfectly level.

Me with two of my boys. I could have never guessed that I would be spending Mother's Day at a cemetery to be with all of my family. I was there again last Saturday and it was so nice to see that sod had been placed over his grave and it looked so much better. We ordered the headstone last Friday and as crazy as it may sound I cannot wait to see it. We will post it when it finally gets here. We decided to do Owen's too, I know depressing huh? Anyway it is two teardrops with a block between them that will have Christ with a boy and a baby.

~Two very special boys~

2010-05-08T14:00:00.007-06:00

A sweet little child, at a party one day,
when toys were being given away,
discovered a broken one and with a smile said,
"I'll take it you see, I know my Daddy can fix anything,
and soon it will be good as new."

And once, perhaps, in Heaven one day,
when bodies were being given away,
A sweet little child, discovered a broken one,
and with a smile said,
"I'll take it, you see, I know my father
can fix anything and someday it will be
good as new."

My sister-in-law sent me this poem after Owen was born and it happens to be perfect for our sweet little boys. Thanks Carly!

We were sent another poem by a lady in Randolph that is great too.

Heaven’s Very Special Child

A meeting was held quite far from Earth.
It’s time again for another birth,
Said the angels to the Lord above.
“This special child will need much love.
His progress may seem very slow,
Accomplishments he may not show
And he’ll require extra care
From the folks he meets way down there.
He may not run of laugh or play:
His thoughts may seem quite far away.
In many ways he won’t adapt,
And he’ll be know as handicapped.
So let’s be careful where he’s sent,
We want his life to be content,
Please, Lord, find parents who
Will do a special job for you.
They will not realize right away
The leading role they were asked to play
But with this child sent from above
Comes stronger faith and richer love.
And soon they will know the privilege given
In caring for this gift from Heaven.
Their precious charge, so meek and mild
Is Heaven’s very special child.”

Dear Landry

2010-05-07T14:21:00.003-06:00

This is a letter from a dear NICU friend who has been through her own struggles of losing a sweet baby. We barely know each other, but it seems like we have known each other for a life-time or even longer. She posted this on her blog and I wanted to make sure I had it on ours. Thanks Ashley, we love you guys.

Dear Landry,

I'm grateful you were able to come see your family, meet them, and stay with them for awhile. I'm grateful you were blessed with the mommy and daddy you have now, for eternity. I'm grateful you have such a beautiful sister and two handsome brothers, who will always remember you. I'm grateful you were able to visit the earth, if only for a short time.

And now, you are back in heaven. I never got to meet you face to face. I'm so sad. I wish I could have. But, one day, we'll get to meet. Until then, watch over your family. They all have a long road to endure.

You see, Landry, it's not easy to loose a child, regardless of how long you were able to have them be a part of your earthly life. As one "angel mom" put it, a part of a mothers soul dies with her child... that part of her soul never breathes again. I think it's the same for daddy's souls. I'm also sure it's the same, but also different, for brothers and sisters too. It's hard. I can tell your mommy misses you, with all her heart. Landry, you have a beautiful, kind, STRONG mommy and daddy. You are so blessed. Their hearts are aching. They are shattered. They feel so much sorrow, it's indescribable. It's not fair to have to be the "strong" ones, the ones who at many times, feel so alone in their trials.

It's not fair to be a parent who endures the loss of a child, to continue on for the rest of our lives, smiling, laughing, and facing each day as best we can, while deep, deep down, we are broken. We are alone. We are different. It's a world few who are "inexperienced" even dare think about visiting, and that makes it hard too.

But, it's not fair that the rest of the world doesn't get the opportunity to be receive the greatest blessing God could possibly give: a beautiful, celestial child. There is nothing comparable. There is nothing as priceless. Because of our blessing in receiving priceless children like you, we find strength to endure the loneliness. Our celestial children make this loneliness bearable. Our celestial children make the loneliness WORTH IT. I know I'm probably not making sense. I know you know what I mean.

I know you have brought such a light and hope to your family. I also know they miss you with all their souls.

Watch over them, Landry. They need you as their angel. Words won't bring the peace they need right now. Only the companionship of their sweet little angel can offer them the peace they need. I know you are with them. I know you love them. We love them too.

We pray you will be able to spend some time with them, as their angel. We pray they will feel you close by.

Would you mind telling our little angel princess that we love and miss her? Please let her know we wouldn't trade her for anything. We are grateful for her, just as your family is grateful for you. Thank goodness our families are forever.

With all our hearts,Nic & Ashley and li'l angel Mercy

Pictures and Eulogy

2010-04-26T11:20:00.005-06:00

These were taken when Landry was 2 weeks old. I am so glad I took them!

Bentley wanted to do about everything at Landry's funeral and I hesitated because I feared emotions would take over but was sure he could do it. Bentley read the eulogy and did a better job than I could have ever imagined doing myself. What a strength our 9 year old son is to us.

The miracle of 23 days

Landry Gale Johnson was born March 30, 2010. He came into this world with a weak little body but a determined spirit to fulfill his earthly mission. He started out on machines and fought each day for four days to get of the machines, breath on his own, drink a bottle, prove himself to everyone, and most of all come home. He had a mission to come home with his family and he did it. We were given 23 precious days and only eight were in the hospital. One of the eight days he was able to meet his siblings and celebrate Abby's birthday.

In 23 short but precious days he was blessed to have met 2 special doctors. Dr. McKenna gave him a blessing stating that his time on earth with his family would be rich. It was! Each kiss, hug and snuggle will be a memory to never forget. Dr. Chan was the ray of sunshine, as always. "I think we are coming out of the woods," he would say when we would call with another improvement.

His mission was to come home.

We gave him love-he showed us charity.

We gave him kisses-he filled our hearts with kindness.

We held him-he gave us comfort.

He showed us how much you can love someone in a short 23 days.

He was reunited with his grandparents, great grandparents, cousin, and many other angel friends on April 21, 2010. Although this time is a struggle we have been shown and given the pure love of Christ. We will forever be grateful to our Heavenly Father for the precious gift of our 23 day miracle, Landry Gale.

Obituary

2010-04-23T23:05:00.000-06:00

Landry Gale Johnson was born March 30, 2010 and passed away April 21, 2010.
What a precious gift of 23 days we were given. There was not much time but many tender moments were shared. Landry was born with low muscle tone which made his chest muscles very weak. After 3 weeks and one day his little body got too tired to endure any longer. We feel very blessed to have had his special spirit in our home and part of our eternal family.

We would like to thank Dr. Gary Chan, Dr. Russel McKenna, Dr. Catherine Depalma and the Logan NICU staff. These people worked very hard to get Landry home to be with his family.

Landry is survived by his parents Lenn and Gayle (Tinker) Johnson, siblings Bentley, Abby and Owen Johnson, all of Cokeville, Wyoming; Grandparents Robert and LaRue Johnson of Randolph, Utah; Michael and Jana Walker of Vernal and Bryan and Jodi Tinker of Manila. He is also survived by many loving aunts, uncles and cousins. He is preceded in death by his maternal grandparents Gale and Linda Sue Tinker and other great grandparents.

A viewing will be held from 11 a.m. to 12 noon, funeral services will follow in Cokeville, Wyoming at the LDS church on Saturday April 24, 2010. Interment will be held at the Laketown Cemetery following the services.

Services will be handled by Crandall Funeral Home in Evanston, Wyoming.

Funeral

2010-04-22T16:10:00.002-06:00

The funeral will be Saturday the 24th of April at the LDS Church in Cokeville, Wyoming. A viewing will be held from 11 to noon and a funeral service to follow. Interment will be at the Laketown City Cemetery following the funeral or approximately around 2 pm. Crandall funeral home in Evanston is handling the arrangements. Thanks for all the prayers, calls and food...

~One more angel in Heaven~

2010-04-21T18:20:00.005-06:00

Landry Gale Johnson returned to live with his Heavenly Father today at 12:15. He left where he loved the most, in his mothers arms. We will be updating when his viewing and burial will be. Please respect us as we grieve.....

"There's NO place like home!"

2010-04-08T08:32:00.002-06:00

We clicked our heels three times and made it home yesterday. We had to postpone a day for weather but yesterday went great.Welcome home little Landry Gale!

A HUGE thank you to Vonda and Tracy this last week. Two earthly angels helped us out more than they will ever know!

Just one more miracle

2010-04-05T11:40:00.005-06:00

Yesterday they took our little man off of high flow and he did great.

Last night they took him off oxygen all together and he is still doing very well. His oxygen sats are still great! We are so excited.

Last night I called the nurse and she was in the middle of feeding him, she stopped to answer my call. I could hear him crying. She said he was a little impatient with her taking his bottle away. It was so nice to hear a cry. I know that sounds crazy but for us it is a blessing and a miracle to hear a cry come from him.

He is eating great and more all the time. Just another miracle!

Thank you for all of your prayers and support. I know our prayers are being answered. His doctor (who is amazing too) thinks we can be thinking of the "H" word tomorrow,(we learned in Primary's to never say the word, so after it is over we will dare say it)!! We are so excited about this too!

His muscle tone is still very low, but we have learned to never give up.

When we do get him home we will be very cautious with visitors because he is a new baby and also we are not sure if his immune system could be somewhat compromised. We know everyone will be anxious to visit and to come and help but please be mindful of your health. The slightest little runny nose or cough could be something big for Owen or this little guy.

Again thank you, thank you for the prayers. It is amazing when prayers are said in your behalf, you can feel the love coming from miles. Thank you! We love you all and will keep you posted!!

(These posts are usually very quick so I apologize for any errors in the post. Just bare with me!)

A happy birthday with miracles!!

2010-04-03T08:21:00.004-06:00

Abby's birthday was yesterday and the NICU pulled some strings and let us bring our family to see our little man. Bentley and Abby were so excited to see their baby brother.Owen wasn't too excited but managed to do okay. Maybe he felt the hospital atmosphere and was ready to be back home!Bentley and Abby both got to hold him and they loved every second of it.
Now for the BIG miracle! Our little guy is drinking from a bottle!!! We are so excited! I think he wants to come home as fast as he can. Plans were changed yesterday from heading to Primary's to coming home from Logan when he is ready. I almost could not believe them over the phone when they told me he was eating from a bottle, I had to see it for myself. Last night I got to feed him and it was amazing. What a miracle! He is doing great. His muscle tone is still very low, but we will take whatever improvements we can.

Thank you for all your prayers!

Today!!

2010-04-01T21:17:00.003-06:00

Today: More improvements were made by our little man, (still with no name). Last night they took him off CPAP and he is still off and being weaned off the high flow. He started digesting food today. We are trying not to get too excited just in case but it sure is hard. I came home this afternoon and when I left he was more alert, wanting to suck a binki and moving a lot more. I never thought you could be proud of a baby but I sure am. I can't believe what a little fighter he is. It was so hard to leave him there but I knew I had to get home to celebrate Abby's birthday tomorrow and just being home is a comfort. I knew that he would have an amazing nurse tonight so I knew he would be okay.
This sticker is right above his bed and the nurse picked this room for him because of it.

This is what I left today, man was it hard!! Again I know he is in good hands. Thanks Ainsley.

Everyone asks "what can I do?", well I am actually going to ask for something. Please keep the prayers coming, they are being answered. I do believe in miracles.

Thank you to everyone already. We are so blessed to have such wonderful family and friends.

He's here!

2010-03-31T21:58:00.002-06:00

Baby boy Johnson is here! He was born yesterday, March 30. We are in the NICU and I am posting this on a nurses personal laptop and I am not so laptop savy. Our little man does not have a name yet but he is a precious little one. He was born with the cord wrapped pretty tight around his neck. He also has low muscle tone and a heart murmur that seems to be sounding better.

He immediatly needed CPAP to keep his lungs open but since 4:45 tonight he has been on high flow nasal canula and his doing great. (I hate to even get excited!)

He weighed 7 pounds 13 oz. and was 20 inches long.

We will post more pictures and updates as much as we can.

I am at the hospital and Lenn is home doing everything so if we don't answer your phone calls be patient and we will return them when we can. Thanks for your love, support and prayers.
A big thanks to a great nurse tonight for trusting me with her computer!

Thanks Tracy and Vonda for helping with Owen and everything else you have done with Abby and and house. You are great!!

Whoever said boys grow up????

2010-03-28T14:32:00.008-06:00

Lenn wins!! I am not sure who needs the congrats, me or him? This little beard thing started as a little competition with a buddy. Lenn outlasted him so I guess he is the winner. He finally decided to shave, but to do that he had to have a little fun with it. (Lenn keeps our house exciting, it is never dull when he is around!).He laughed with joy between each shave and Abby was busy hiding behind things saying, "he looks freaky"! He couldn't wait to show his Mom because he knows it drives her crazy, so he left this one. He went down to show her and she was gone, so he left it and actually went to Bentley's pinewood derby with it. I could have died, but that is just silly Lenn. He wore 'chaps' on his face for a few days.

This one is where he is right now. I would say it is a huge improvement!!

This is from last fall when Lenn decided he wanted to have a John Lennon do and grow his hair and beard out. (Yeah not sure what crisis you call this!) He gets a kick out of it so I have learned to just wait it out. The quieter I am the quicker it goes away, as long as the is no harm in it, right? I finally convinced him that he was way beyond being able to do the John Lennon thing and he let me cut it, but not without the fun.

The comb over!!

The mohawk!

Finally back to Lenn! And they say we have no entertainment!! Yeah right, we have Lenn, we will always have entertainment!! It would get pretty boring without him.

What is going to happen this year for the BIG DAY?

2010-03-07T16:41:00.003-07:00

As you all should know my BIRTHDAY IS A BIG DAY around here. I always thought it should be a national holiday! So lo and behold my birthday made it on the marquee board in Cokeville. That was 2006.

2006, oh what a year. We were building the house, changing jobs, and having a quarter life crisis. I shaved my head and some of my poor hair never came back..

2007, I thought nothing would top my quarter life crisis, but this year even got better. Still trying to grow my hair back and celebrated my birthday at Grandma Johnson's funeral. Yup, got to be a pall bearer on my birthday.

2008, with all my grandparents funerals behind me this was the year to celebrate! Then Owen was born. Spent the months leading up to my birthday in the hospital and a good deal of them after there too. This was the year I spent MY holiday in BED sicker than a dog. The entire week was spent by a huge bowl, room spinning, and a shot in the butt (thanks Karen).. Sounds great huh?

2009, funerals done, sickness done, this is the year to kick up the ole heels! This national holiday was spent in Houston.... Yup, in Texas. I flew home and celebrated early with the kids. I did have a really large piece of prime rib at salt grass steakhouse and a homemade pecan pie to myself, but it wasn't home...

2010, IS THIS THE YEAR? Already cut the remaining hair on my head and moved it lower to my chin area. Not in Texas, no funerals yet, and I am as healthy as a horse! What is going to happen tomorrow? The anticipation is killing me!

A side note-Happy Birthday Dr. Chan, you were a special family friend long before we knew we shared birthdays!

Sometimes they are more like FAMILY

2010-02-15T14:34:00.004-07:00

Earl, we love this man, what more can I say! Let me tell you how Earl came into our lives. When Owen was still in the NICU, we would come into the unit wash up and then round the corner to look at the wall chart with nurse assignments hoping to see a familiar name. One day, not too long after Owen had been there, we looked at the chart and saw Owen with a nurse named Earl. 'Earl' we thought! Yes, the Dixie Chicks song came right into our minds. We walked down the hall wondering what we were going to walk into. Little did we know, (this is why you don't judge others), we were going to meet one of the most loving and caring nurses there. Sorry we ever doubted you Earl! If I remember right we walked in to see Earl holding Owen up on his shoulder with the most gentle hands. By the end of the shift Earl asked if he could sign up to be a primary nurse for Owen. He said "When I was holding him, he looked into my eyes and I fell in love with him." We gladly accepted his request and fell in love with Earl ourselves. In fact, when both Lenn and I were home with Bentley and Abby I would call to see how Owen was doing each day. It never failed when I got off the phone I was hit with the question of who is Owen's nurse today? We were all relieved when it was Earl or one of the other favorites.

Last month Earl was going to visit his Dad and he asked if he could come visit. Of course he can visit! Earl made a huge detour to come and visit. We were all glad to see him, even Owen. Owen hasn't seen Earl since July of 2008. At that time he was 6 months old. When Earl came in and said hello, I could tell that Owen knew exactly who he was. Owen has a way with his eyes and he didn't give him the 'who are you and what are you going to do to me' look. He gave him the look of 'wow, it's been awhile, where have you been?' look. Thanks Earl, it was great to see you and thanks for surprising us with your love and knowledge of nursing.

I did try to get both of them to smile but no luck!

Last week we took Owen to some routine appointments at Primary's. They all went well and all the docs said he looks great and keep it up. While we were there we saw two people that have come to mean A LOT to our family. I realized we didn't have one picture of either one of them so I was on a mission . I don't know if Toni was too excited about a picture, but thanks anyway. (Hopefully she isn't hiding from the law or anything!) We had to convince her that we didn't just want the back of her head we wanted to see the face that we will always remember. She did get some smiles out of Owen but I am telling you the camera can not catch them very well.

Thanks, Toni for all you have done and continue to do for us along this journey.

Next is Chris, to put it modestly, we wouldn't be able to keep Owen home without her. She is more than willing to help us with whatever we need help with over phone and email. I am sure that is not protocol but she does it because she knows how badly we want to stay home. We can not thank her enough for what she has done and the stress I am sure she goes through when handling crazy situations with us over the phone. Thanks Chris.

When I asked her for a picture she jumped right over Owen's tubes and gave him a big kiss on the forehead, then turned and gave us a big smile!!

These are only a few of the people that have become our 'NICU family', they are just the most recent pictures. We have been blessed to have met so many good people through our journey with Owen. I am not sure what our lives would be like without them. The nurses, doctors (some anyway), social workers, RT's, other parents and the palliative care team have become more like family. We will always have a special place in our hearts for all of them.

Owen's 2nd Birthday!

2010-01-03T20:04:00.004-07:00

Today is Owen's 2nd birthday! We were able to celebrate here at home with some family. It turned out to be a nice day.The Cake!

The birthday boy, cake and balloons!

Singing Happy Birthday to the little man.

His gift from Aunt Nellie. Thanks it is so cute. It was worth the wait.

Ellianna (cousin) gave him a stuffed cow and bear. That was so sweet. Thanks Elli.

Owen just relaxing after everyone left.

Happy birthday Owen. We love you. You are such a special part of our family.

A very special shared day!

2010-01-03T19:37:00.004-07:00

Today is Owen's birthday and he shares it with a very special angel who has touched our lives for good, forever. We wanted to do something for her, all we could think of is sending some balloons heavenward for her to catch and play with. We feel like this special angel is part of the family so happy birthday in Heaven Mercydez. We love you. Thanks for touching our family the way that you have.
Owen holding the balloons before we sent them. Bentley and Abby were so excited to send these to her. It is amazing how she even influenced them. Don't worry with the Wyoming wind I am sure she got them in good time!

2009-12-31T16:31:00.000-07:00

Make a Smilebox slideshow

Merry Christmas!

2009-12-22T10:32:00.003-07:00

Wishing you all a very Merry Christmas and a happy and healthy New Year!

(Owen decided to sleep during all the fun this year.)

Families

2009-12-06T08:20:00.013-07:00

These two pictures will always be near and dear to my heart as many others will be.

This was going to be a journal entry but I felt an impression to blog it. I wish I had a better way with words as so many of you bloggers do.

The fact of the matter is we are doing great but great is only our interpretation of life. Our home has never been filled with so much love, happiness and peace. We have once again been reminded how precious life is and how much we take for granted. Owen has never been happier. The last few weeks he really hasn't stopped smiling and we go to him to draw our strength. He is showing signs of being weaker, which breaks our hearts but his spirit is even stronger than before. The truth is, our lives and our family would be empty without Owen. We know one day he will be gone and we will have to draw our strength from our Heavenly Father alone. We know Owen will always be somewhere near.

We really are doing well and as Owen loses the ability to move his wrists and fingers, he has gained more mouth movement. It is so cute and funny. When I pick him up to hold him he makes 'kissy' sounds. Last night he played with his tongue more than he ever has. I could not stop laughing, and he knew HE was making me laugh. We enjoy and celebrate the small things.

All of our emotions have re-surfaced the last few days after being asked to talk to a PICU family facing some of the very same decisions we had to. Our hearts are broken for them. Whoever imagines having to decide to deal with death now or later for their baby? When you are going through it yourself it is so hard and you just hope and pray nobody else has to go through it, even though many families do. Please pray for this family, that they will have the spirit of peace with them as they face this difficult decision with their sweet little angel.

I can't imagine my life without be blessed with Owen. Yes, it would be much easier, less stressful and more normal. I would have missed out on so many things had this special boy not been brought into our lives. We don't know how long he will be here on earth with us but I pray we will never forget the lessons we have learned from him. We have been so blessed with the many people he has brought into our lives. It makes me think of the lyrics from the Dance by Garth Brooks. "Yes, my life is better left to chance I could've missed the pain but I would have to miss the dance". Maybe those aren't exact but I would not have missed this dance for anything.

I have been asked if I get the chance to attend the temple? (Not really and I hope the Lord understands.) The friend who asked me this question later came to our house, as she walked in by Owen, she said "you don't need to go to the temple, you have the same feeling here." He really has lifted the spirit in our home. We are no where near perfection but Owen gives us a good reason to strive to do better.

I pray we are taking advantage of every moment we can with him and our other children. If I could just remember that tomorrow does not hold any promises for any of us. With the Christmas season here I just can not help but be thankful for and to my Savior for blessing me with the life that he has.

I bought this wall hanging set before Owen came to the family, I finally hung them up last spring. After I hung them, I stepped back to make sure they were straight. As I read the words in the order I put them I was struck with the realization that I had put my children in order without knowing it.

Bentley~Faith.

This last spring when Owen had not done well, and it seemed we couldn't get him healthy and keep him that way I had a feeling to talk to Bentley. I worry about him because he has such a soft heart but tries to hide it like his Dad. One day Abby was with Lenn so I took the opportunity to talk to Bentley about Owen. I asked him if he ever worried about when Owen passes away, or if it scared him? His answer blew me away and I knew why I had a strong impression to talk to him. He said, "no, won't he be resurrected just like Jesus?". I was shocked! No wonder we are told to have the faith of a child.

I have wanted to plant a little grove or garden in honor Owen. After talking with Bentley we both walked outside to look for the perfect spot to plant the trees. I thought of putting it in a quiet corner, but Bentley said why don't we put it somewhere where Owen can go when he gets older? With that in mind we planted the trees out front, just off from sidewalk.

Abby~Hope.

The day before Owen had his first birthday Lenn's cousin came to visit. Abby does not know him well. When he came in, Abby quietly asked me if he was the man coming to take all of Owen's machines aways. I told her no and asked why. She replied, 'because tomorrow he is turning one'. She has always had hope that her little brother would one day give all of his machines away and run off and play with her.

Owen~Love.

Owen's love that he brings to the family does not need a story behind it. When we think of Owen we just feel love.

Halloween

2009-11-01T10:33:00.005-07:00

Abby the witch~Owen, Wyoming's Cowboy Joe~Bentley the Old Man. I think they turned out pretty cute considering they all came about within 24 hours of dressing up!Bentley eating his mummy pizza.

Abby showing hers off. They had fun making these and they were really easy.

Owen helping make doughnuts. He didn't like cutting them out but he liked the feel of the dough.

Bentley making sure his are cut out just right! He is so precise sometimes.

Abby making sure she was doing it just right.

We carved pumpkins this last week. Abby started asking about carving pumpkins in August. Bentley carved the wolf, we were all pretty impressed. I not sure about the face though!

Lenn carved the smiley face and Abby and I did the witch. Owen slept and was quite happy to do it. He didn't want anything to do with that slimy stuff from the pumpkin.

New Pictures

2009-10-30T12:52:00.003-06:00

The BIG Meeting!

2009-10-23T18:07:00.009-06:00

We had an opportunity to attend the Mega Conference (a conference for those who deal with disabilities) in Casper, Wyoming. It was the second week in October and with the early flu season we didn't know if we would be able to go or not. There were two reasons for going. First, we were going to be given an award for excellence for supporting and being dedicated to our special little man Owen. Second, we would be able to meet some very special people in our lives whom we have only spoken to through email or over the phone. Last minute we decided to go because we may not have the opportunity again.
We are so glad that we went, the people we met were amazing, they are the ones who got us home with what we needed for Owen. We are sure there are many that helped that we didn't meet, but the ones we did were those who really worked hard without giving up. We are so thankful them still today.

Owen sportin' the shades on the way to Casper.

Charla (Children's special health), Owen and Sam (Governor's Council for people with disabilities). Meeting these two was more than incredible, they were the ones who put their jobs on the line to get us home. THANK YOU!

Donna (former March of Dimes), Owen and Sam. Donna found a grant for us to help pay our rent while we were in the Ronald McDonald House in SLC. We were so happy to meet these two ladies. When we felt like giving up they wouldn't let us. They kept telling us not to take 'no' for an answer. Without these two special 'hero's' we wouldn't be where we are today, home in Cokeville. They fought the battle when we were too weak to do it ourselves. Thanks Sam and Donna, you will always be in our hearts.

Abby playing with Owen at the banquet, and Owen is loving every bit of it.

Lenn trying to escape the camera. I got him anyway,

and Bentley wanted this picture to make the blog for sure.

That's a little better Lenn. I think he just wants to show off the facial hair. Bentley actually gave me a good smile.

Owen holding the award, look hard, it's clear.

Our family photo with Sam and Victor right before our lovely news appearance. Victor works with Sam and is the one who gave us our award.

Yes, I did say news appearance. Donna, bless her heart, grabbed the news reporters to ask us a few a questions and put our family on the Casper news. We were all a little embarrassed but I think Bentley and Abby would have crawled in a hole if there would have been one available.
We should be getting a copy of the news report, if we do we will try to put on our blog. We didn't know how to get it from the internet to here.

In the end we were very happy that we were able to make the trip and everyone traveled well. We had some great experiences and it was good to have Bentley and Abby around other people with disabilities and see what great people they are.

Football and Cousins

2009-10-06T07:20:00.006-06:00

Bentley and his cousin, Braxton, faced off twice this year and it doesn't really matter what the score was, right? They both had a good time and both seem to have a love for the game. When they played in Mt. View most of their cousins were able to come watch them play, (even though they were more interested in the playground).Don't worry Owen isn't about to miss out on the football, at least he can dress the part. Go Pokes!

Owen and his cousin Camree, they are three days apart and this is their first meeting. They were at Primary's together but they were in different parts of the hospital.

Owen and his newest cousin, Camden. Owen is not the happiest, but is trying to figure out who is on his lap.

Owen made it to all of Bentley's games this year. We were so happy to be able to support Bentley as a whole family. The last game started out hot but ended oh so cold, but it didn't bother Owen a bit, I just bundled him up good and he enjoyed the whole game.
If you noticed the lack of pictures of Abby, don't worry she was there too. I am just not sure where!!! She is miss social and there were too many friends to sit and watch Bentley. At least she knew his number and saw a few of his good plays. For Homecoming week her class made little Panther flags and she made a 'go 20' for Bentley and then painted her face the same. I guess that is supporting her brother.

Lenn helped coach the team and I think he enjoyed it even though he wouldn't get in the team picture for the paper. He did a great job.

Happy Birthday Bentley and Pee Wee Football

2009-09-18T10:55:00.006-06:00

Bentley turned 9 last Monday! He wanted a football cake so Gayle and I came up with this one. I know, I know Texas beat Wyoming but we can still have a Cowboy cake. All that matters is the smile behind the cake.

Bentley is playing peewee football this year. Cokeville lets the third graders play because the sixth graders have to make numbers on the jr high. He is number 20 in black and orange.

Here is Bentley scoring against Rich in the B game. He has scored three times in the B game. The first was against Mt. View and then Rich. On Saturday in Mt. View, Bentley scored on a sixty yard scamper.

Here he is handing the ball off.

In the A game making a tackle.

Bentley starts on defense as a inside linebacker, and comes in for running back for the A game.