9 years of Miracles

My sweet 1pound 11 oz baby is 9. We have witnessed many miracles. We have seen them come one, after the other. Some are hard to see as miracles until we are far past them, but others have been amazing to see. 

• Tyler is very opinionated. But only a few things. He doesn't like to be called anything BUT Tyler. If you call him Ty you will be corrected. 
• He can tell you verbatim any story that you read to him after the second round. There is also a little trick he uses called READING. Because that was on thing they never thought he would do. But he does. 
• Ask him anything and he can equate it to any of the millions of Barney episodes and he can tell you all about them in any sequences at any time. 
• He loves to say the prayer. He is convinced that Jesus Christs is like the tooth fairy who visits when he is said and comes in to tuck him in extra tight at night. This by itself is a testimony builder. 
• Tyler likes church. Church poses a problem when it comes to his anxiety disorder, but our ward is amazing with his issue and many love watching him during sacrament. He plays his iPad and enjoys everything with no sound. But when it is time for the Primary to sing he is on the front row. He falls 7 or 8 times back to his seat but he is totally for the go!
• Tyler loves special blessings or priesthood blessings from his dad he is 99% sure that a special prayers will make everything ok. Even a bug bite. 
• Tyler can read. He is able to do all of his stuff with a CCTV at school and he is doing so well.  He is at third grade curriculum. 
• Tyler loves everyone and everything. He loves his cousins, grandparents and Aunt Nicky. 

A few weeks ago we were in the CP clinic down here .They were equating what Tyler goes through in one day. His muscles at the end of the day, feel like he ran a full marathon. A full 26 miles. Whatever your body feels like after that, his does that daily. 

Tyler does everything he can to be like everyone else .We love him so much and am so proud of him. There will never be another baby in our lives that has been through more and will continue to go through more. He is one of a kind. We wanted him so much, We have fought to keep him here. We fought to stay pregnant, we fought throughout the pregnancy. Nothing was right. The delivery was horrific. The time in the NICU was disturbing. The treatment from those who "love us" has been horrific. But we have gotten up and done our best. With our head held high, we know we are suppose to be his parents and that no one could do what we have done. 

Tyler is a true hero. He will always be a hero. 

He is an ordinary miracle. 

The many faces of Grayson

Trains....... Things that move...... Garbage trucks. No really, if it goes down the street and makes noise he wants to see it.

He is a creative little toot for sure. But when he wants to relax and kick his feet up, he will find his own way to do it. 

We have never had a neurotypical kiddo, so my over active/ hypochondric self tends to freak out. Our awesome PA is always willing to listen. But this kid gets more than his fair share of "smart" app time on the Ipad. He eats rocks and sometimes, you just gotta LOVE that little cute face. I love that face! 

Our trips to Tori's "par ma see" is one of his favorite things. And usually a baby comes with him. Oh how Tori at the pharmacy loves his little face! 

Every morning he is in bed with me and he says " Mommy I need a cuddle." But he HAS to be in my bed. He never sleeps alone. Nothing we have tried works. I am his big fat security blanket. But his sleeping is my most favorite thing. He is so sweet. He has to be holding my hand, or hugging me or touching me. And just a hand on his sweet heart to know he is still with me, sure does heal a broken heart a little at a time.  ( Now if only he will sleep when we move to our NEW HOUSE!!) 

But his MOST favorite thing is to sleep in a sleep over with his brother. He wants to sleep in Tyler's bed every single night. He has even left my room and his room to go curl up with Tyler. Thankfully, Tyler sleeps through it all. 

And he always finds cool ways to be Grayson. 

He is a pretend play freak. Loves to make pizza's, fix cars, drive cars, and play in a kitchen and best of all, he takes GREAT selfies!

This little kiddo gave me has been so hard and so rewarding. I am pretty sure that it is just payback for all the things I did as a kid and all that Dallas did. But most of all, we wanted him so much. We did everything we could to have him. We had so may procedures, and so much heartache to get him here. We had more drama than we EVER wanted when we finally got pregnant with this sweet spirit. We were told we "ruined" someones life and ostracized and blamed for things that were just mean, mean.( which by the way, these same saints didn't exactly tell us in a way that allowed us to process the last 4 kids, because empathy is not their forte) But all we wanted was someone to love. Some sweet spirit to have for Tyler to have a sibling. He is the icing on the cake for us. He keeps us on our toes, he gives us no sleep. But he is the best and perfect brother for Tyler. And perfect sweetness for me and Dallas. 

* Disclaimer: While it has been brought to my attention that I am hurting someone's feelings by voicing my feelings that happened when we found out we were pregnant with Grayson. For writing in my blog, I am sorry that it hurt your feelings. My feelings were and still are hurt but my apologies.*

The little brother

Grayson adores Tyler.  He will follow him from here to anywhere. He knows when things are not going great and in true brother fashion, really rubs salt in the wounds! He is a terror when it comes to Tyler. He has a problem with leaving him alone, not biting, hitting or jumping on him, but most of all he has to do EVERYTHING that Tyler does.

From the time that Grayson was a month old he has attended Therapy with Tyler. We started in Utah and have just kept going. Here in Arizona we have 3 therapies and Grayson joins in often.

 After surgery, Tyler didn't really want to walk a whole lot so he crawled all over. Grayson followed. Tyler had casts on his feet, Grayson made sure his monkey had one too.

We went to the zoo right after surgery with Tyler's class, and sure enough Grayson wanted to go too.

He really is his best little friend.

Here is a little glimpse of our little brother.

We have a few things that we need to work on when it comes to Grayson. He had a well check ad follow up with a private agency and it seems as tough we need to Grayons some extra therapy. We are hoping it will help with a lot of his behavior at home. But really we love him to bits and pieces. 

2012 Year in Review!

Our year in review generally is around Tyler, but it is around 2 little boys that have become even bigger.

 January: The seizure that Tyler  had in December really put us into a cope mode. Such a cope mode that now, January 2013, we are FINALLY pulling out of it. We have literally worked our way to a new state in a cope mode kind of flight. But we got through it. Nothing major worked.

Grayson turned six months old. He was sitting up and playing and doing so well.

February: Tyler got phenol shots. It was the last time he has had them. He did really well, he behaved and was so polite. His other behaviors were exhausting. He had terrible behaviors that we decided to change seizure meds to other meds and medicate for the anxiety the seizure had given us. It was a very long few months before they were under control.

March: This was a great few months that started with 2 sweet ladies knocking on our door so we could be a WISH family.

April : we had the BEST visually impaired Easter EVER! And we got even more information on our wonderful world of Disney Cruise! And out sweet baby Grayson turned 9 months old. He was growing so fast.

May:  We started on Paxil, and he was doing awesome! We were really struggling with school placement for the poor kid. And we were planning our awesome trip to the Bahama’s

June:  We went on the best trip in the entire world. It made Tyler’s dream come true and we talk about it daily. We had such a great time. I hope some day we are able to do it again.

July: My sweetest termie turned 1! What a year it was.  We had a HUGE party and everyone we knew came to celebrate how amazing he is. He also broke his arm AND we decided to move back to Arizona.

August: We moved. Ty started in the BEST class that he could be in. It was a wonderful place for him to go. Grayson got his first hair cut. We moved into our “Summer house.” Ty is thriving here.

September:  Ty had a fabulous birthday party where we bowled.. and bowled. He was so happy and so great.

October: We went to Utah to visit. Turns out, with the end of the year events, we won’t be going back as often as we thought we would so we are so glad we were able to see Kayden get baptized and we are looking forward to Tyler’s this year!

November:  Tyler officially does his bike like a champion. He is doing awesome. It was also where we started to unravel a little.

December: I had surgery and am struggling a little and Christmas was awesome!!

We have had a rough few end months. We will do what we always do and survive! We will come out on top and do the best we can!

When you wish upon a star

My nephew Kayden has Hypoplastic kidney disease. His Kidneys never really grew. A few years ago he was given and AWESOME gift from a family who was going through the worst time of their life. He was given a second chance of life by this family who donated their loved ones kidney.

This last year he was finally big enough to make a wish. He was big enough because he was healthy and all that fun stuff. He wanted to meet Buzz Light Year. So they went to Disney World in Florida for a week.

The wish was sponsored by some pretty remarkable people. LOTS of remarkable people. The student body at West Jordan High raised money to give to Make a Wish. This remarkable donations was able to fund 3 FULL wishes.

Kayden was the first wish to ever get to meet his wish makers. It was an awesome experience. It was very emotional and very amazing. I can't wait for us to get one of our own!

Kayden... Raising his star. When you wish upon a star. It doesn't make a difference who you are!

Listening to Kayden and Tammy tell about their trip. Kayden was HILARIOUS!

These are 2 of the girls from the High School that came to be with Kayden for his star raising. They were so sweet. I am glad they got to see it.

A wish wall. A sobering thing to see. We have 3 chronically ill children on my moms side of the Family. Between Kayden, Ty and Daphne we have seen and will be seeing a million miracles. This wall is one of those. There is a story for everything. These Hero's have a story that should be told.
This is Kayden's wish Cake. It had Buzz on it. He asked me to hold up Ty Ty and let him see it. Ty stuck his hand in it. Kayden thought it was SOOO funny and wasn't even mad.

A 2 milestone day

I think in real life it was more like a 3 milestone day and possibly even more( OK... I think it was 4.. we will count at the end... UPDATE: final count is 5!!!!). Despite the efforts of my migraine, Ty had a really good day and we left the CP clinic with our head held high. It is tough to not be worried or to get down at appointments like today but Ty held his own and he rocked the rest of the day.

Today was the CP clinic at Shriner's hospital. Again, I can't say enough about the Shrines and for the care they give Tyler. It is impressive and done all on donations.

At the CP clinic we see our rehab doc, her nurse practitioner and usually a developmental pediatrician. The developmental pediatrician is only there when and if we have major developmental concerns on the side of the rehab doc. For a first time in a long time I am proud to say NOPE. He is doing really well. Does that mean he is caught up.. OH NO! But he is progressing and quickly which is nice to hear.

The rehab doc we have is Dr. Gooch. She is great. She gave us a great bill of health and wonderful encouragement. She still thinks that Tyler will continue to improve with speech and was pretty positive with his phenol shots. This is the first follow up for them we have had.

So the plan for Tyler is: Increase his PT and get him to do better with hip extension and stamina. She gave us some games to play with him and is really encouraging playing soccer or kicking the ball as something he really needs. She also encouraged playing obstacle courses ( which he rocks at because he THROWS everything.)

While we were leaving Shriner's we walked past the HUGE statue and Ty wanted to go closer. He called it a tree and then he licked it. It was interesting to see that what he saw and what he associated it with was something big. Like a tree.

And he was LICKING the "tree"!

After we got home his dad played outside with him for awhile. Dallas would tell him to go to the middle and he would go right to the middle of the yard. Then when his dad asked him to use his words he would sign Dad, the sound K (The sound K was for kick. ) and then sign please. HUGE.

Ty has his dad!

After awhile his dad had to go back in to work so we went to the local park. He LOVES the park and especially likes it when there are other kids there. Since we are pretty active in our local ward lots of the kids know Tyler and know that he has extra needs and most of them are really nice about them and most can't wait to show him or take him somewhere.

We hadn't been there for all winter but Ty ran right up and went up the stairs and down the slide. He was so excited to be outside. As he got more confident in going up the stairs,I looked up to see SOMEONE standing UP and going up the stairs. YEP he was going up without crawling.

Seriously... Look at that smile!

Next up he kept going... and went down the big slide. He always says "Weee" when he goes down. The big slide takes his breathe away and he said it when he got to the bottom.

NEXT he got even more daring and climbed UP the climbing wall. He needed such a little bit of help on the bottom but he did the rest himself and up he went. ALL by himself. That is HUGE. He is on his way to being able to maneuver himself all alone at the playground.

Next up.. Learning to ride a tricycle with no help. I was thinking of getting an adaptive one from Shriner's or to see if they can help him get even better!

For those not sure WHAT milestones we hit here is the quick cap!

• Walking OUT of Shriner's with no assistance
• Getting good news on his appointment
• Standing up and walking UP the stairs
• Going down the big BIG slide
• Climbing up the climbing wall

November is Prematurity Awareness Month

~ Preemie FACT: 1 in 8 babies are born premature in the United States. Many will be to small or sick to even make it home. ~

November is Prematurity Awareness Month. In September of 2005 I started blogging so that friends and family could keep track of the roller coaster ride of prematurity we were on. I vowed from that day on that I would do my best to be an advocate AND a voice for those too tiny to do it on their own.

I will be posting our birth story a little later in the Month and most have already heard or read it. I feel it is important to share it and our story. Some times it is a negative time and most of the time it is positive. There have been so many who have run across our blog and have been filled with hope and information. I, in turn, have found so many people who are on the same journey that have filled us with hope and information.

With blogging for prematurity we hope to spread the word and provide information regarding premature infants and the struggles they face. Provide ways to keep kids healthy and to give you a glimpse into the life we live.

Challenge for the MONTH and especially for November 17th: Friends and family ( and especially family) If you have been touched by Prematurity in one way or another, please post during the month of November in honor of that preemie. Show your love and support. The more information out there the more those on the journey can feel they have some where to turn.

*If you are posting a post in Honor of a preemie, leave me a comment so we can link your blog and get the word out!*

Monday Mom day

Today was a much better day. Though it started out pretty rough and I have had a crying headache all day I tried to make the best of it and we did Mom and Tyler ( with Dad) ALLLLLL day.

The night was rough for Dallas so he was up working EARLY. Ty came in around 3 am and I was up and down with him from 4 am on. The phrase of the early morning was GO TO SLEEP the sun is not up yet. My dang blinds had other loyalties around 7 and Ty was up for the day. I told Ty he had to be nice to mommy or he would be napping in the afternoon. ( An idle threat for fear of not sleeping in the night.)

After a emotional morning and LOTS of tears from mom ( not Tyler) we took off with Dad to exchange some sandals that they ended up not having any more of so we just bought shoes. And we headed into Cabela's for free fish aquarium. I don't mind the big aquarium but Ty loses interest rather fast. We walked around looking at the stuffed animals that he like MOST of and even said "Da" for deer at a few parts.

We ate lunch at the Cabela Cafe and took Dad home. Tyler and I decided against walking down to the Kids library on the corner and drove. The sky was not looking kind and we were glad we decided to drive.

The library is mostly kids books but we read a few and then found a Barney book. Barney talked about playing with friends and so we went outside. A little girl from the neighborhood came out with her mom and She would RUN past the end of the slide where Ty was and he would watch her, hop of the slide and take off as fast as those little legs would let him. He didn't dare go all the way up the big slide but he would slide down the little ones and wait for her and then follow her. It was way cute.


( excuse the not great quality of photos.. they are pretty good quality for a cell/iphone but still)
We left the park in time to miss the down pour but in last second decision decided to bring daddy a drink so we went to the gas station. As we were waiting in line to pay a big crash of thunder came down and we were in a DOWNPOUR. Some nice man offered to help us to the car with our drinks and Ty was SOAKED and smiling.

By the time we got down around the corner the rain stopped for a minute and we got in safe and sound. Later though Ty would stand at the window with his mouth open trying to get the rain that would come through the screen.

We spent the rest of the afternoon bundled and blowing bubbles. We took one last excursion outside where he threw rocks till it started to rain and mommy had to go to school .

The lesson I learned to day while watching my sweet miracle try and run and chase after that little girl was this. He keeps falling. BUT he always gets up. His little heart and his little Spirit is so large and so big that nothing keeps him down. He was right back up like nothing had happened. Time after time after time.

It is times like that, with tears in my eyes ( again) that I am reminded of his worth. Of my worth as his mother and at my HONOR from my Heavenly Father as to why he is mine. As inadequate as I feel and have felt the last few days I know that he is my miracle.

In the words of Dumbos mommy " All those same people who scold you, what they'd give just for the right to hold you!"

You are my hero ! Thank you for reminding me to get back up. And get back up again. And keep on going.

Ordinary Miracle

Growing up my mom read us books. Lots of them. One of her favorites that she still reads to her third graders is Charlotte's web. Most everyone knows the story and when it was redone a few years ago I bought it and have watched it a few times.

Until recently it was just a nice story. But I was listening to the song on it. I think it is on the original but I am not sure. For some reason it was like I had heard it before. Like I had dejavu or something.

The story is of a little pig. The runt. He is taken in and loved and cared for by a girl. The pig goes away to live down the street only to find that he is destined to be made into Christmas dinner. Hoping for something to come along and make him spectacular he finds a friend. His friend is a spider. Her name is Charlotte. Charlotte goes about doing extraordinary things for her ordinary friend. In turn her extra ordinary events save his life. In doing so she still loses hers. She finishes her destiny of extra ordinary things for her friend and passes on. Wilbur is saved from Christmas dinner and becomes a miracle. An extra ordinary pig.

So why did this strike a cord? One because I am related to the "Wares" and cry over everything. And 2, because I thought of what has been going on around me for the last 3 years.

I have learned that the words to that song are more true than I will ever know.

First ordinary miracle in our life was Kayden. He was born what we thought of as a healthy little full term little guy. But found several wees later he was VERY sick. Although him being sick didn't make him extra ordinary. What made him extra ordianary was the extra ordinary little gift given by a simple person doing something great. By someone... more amazingly, a grieving mother she offered a extra ordinary thing to him. She offered her daughters organs to save his life. She became a hero to a family and Kayden became the everyday ordinary miracle.

Just over a year ago Little Noah was born. Again a full term healthy kid, but soon as he was turning blue they realized something was wrong. Whisked off to the NICU they found his little heart was not healthy and here started the ordinary miracle of this little boy. Although to his sister he was just Noah to the rest of us he was a special little blessing. On 7-7-07 he was given that extra ordinary gift by a grieving mother. A heart. A heart that would keep on beating. Causing a family to forever be indebted to their selfless act.

In our own life I have often wondered what would have been if our lives were not torn upside down and changed forever on that fateful day of September 21st. I think often of what if's and if only's only to be show the perfection of my everyday ordinary miracle.

The ordinary miracle of him sitting on his own, crawling a million miles and hour, and those amazing first steps. Although they were not as expected they were still there. Those words of "just take him home and love him" echo in my mind and I think of course we will. We will always love him.

Just like Charolotte selflessly gave to Wilbur so many sacrifices have selflessly been given to my little Man. Becuase we took him home, loved him and did all we could to help him he has become that Ordinary Miracle. The everyday, common place, walking ordinary miracle.

The many faces of my ordinary miracle.

Press play on the sidebar of my blog for the song Ordinary miracle.

I'll walk!

First some random updates. I can't find the cord so I can download the pictures but I am telling you... they are cute!!

It has rained for 2 days and raining here means MUCH cooler temps. We hit 108 the first of the week and ended with the 50's. Jackets anyone? But despite the bad weather Ty still wanted to spend his days outside. I love that kid.

Anyway, I was driving home this evening and heard a country sing on the radio and started to cry. I am NOT kidding. I thought I was turning into my mom!! ( just kidding ( kinda) Mom!! ) Its by a artist named Bucky Covington. Its called "I'll walk."
The chorus is what really got me. Obviously Ty is not a girl and is not hit on prom night but the idea is the same. ( the video is HORRIBLE and I will look for a better one.. or maybe I will make one!!)



We were 18, it was prom night
We had our first big fight
She said "pull this car over"
I did and then I told her
"I don't know what you are crying for"
I grabbed her hand and she reached for the door
She said. . ."I'll walk
Let go of my hand
Right now I'm hurt
And you don't understand
So just be quiet
And later we will talk
Just leave, don't worry
I'll walk"

It was a dark night, a black dress
Driver never saw her around the bend
I never will forget the call
Or driving to the hospital
Where they told me her legs still wouldn't move
I cried when I walked into her room
She said. . .

"I'll walk
Please come and hold my hand
Right now I hurt
And I don't understand
Let's just be quiet
And later we can talk
Please stay, don't worry
I'll walk"

I held her hand through everything
The weeks and months of therapy
And I held her hand and asked her to be my bride
She's dreamed from a little girl
To have her daddy bring her down the aisle
So from her wheelchair she looks up at him and smiles
and says. . .

"I'll walk
Please hold my hand
I know that this will hurt
I know you understand
Please, Daddy don't cry
This is already hard
Let's go, don't worry
I'll walk"

One thing I have found for certain with Tyler is that he will walk. His determination to do it is there. Yes it is hard for him and that as a parent to watch sometimes BREAKS my heart. But at the same time, he is who is he.

I love that little guy so much. And some day he will walk, Till then I will hold his hand. I watch as it hurts and sometimes I cry but all in all..

He will walk!