Liebster Award- Special Needs Edition

This Journey in our life nominated our blog for a Liebster Award. As I was browsing through her blog I realized just how valuable her blog will be to us! Her daughter is visually impaired from none other than the dreaded ROP!

In participation with the official Liebster Award rules, I will get to share 11 random facts about Tyler, and then sharing the answers to Rachel’s questions. I hope you guys enjoy the read, learn something new about Tyler and get to know more Special needs parents!

11 Random Tyler Facts 

1. If you read him a book and he likes it, he will have it memorized. Annoying, but it tricks people into thinking he can read. Sneaky toot! ( But he can read, just not all some thinks he can!)
2. Holidays are HUGE for him. He loves to have parties. So much so, that dinner every night is a special tea party in which we all get to take “Nibbles.” He also knows when all the major holidays are and asks frequently what we are doing for them. 
3. Tyler doesn’t drink anything but Dr. Pepper or Coke. Basically anything without fizz makes him gag due to sensory issues. We try, but after getting caffeine every day of your life for a year, it doesn’t phase him. 
4. Tyler LOVES jokes. He makes them up daily and about everything and laughs so hard and so long. He loves making people laugh. 
5. He loves movies. He goes back and forth between Disney Junior everything, to Sesame Street to the dreaded Barney. I am fine with all but Barney.
6. He has weird names for everything. He calls his school the flying fairy school. My mom is Grandma the Old Lady. I am Mommy the Kelly the girl. He was Tyler the professor for well over a year. He is now Tyler The Brown. And we don’t get to deviate from that name without him correcting us. 
7. Ty loves Goofy and Mickey Mouse. 
8. Ty thinks he is a pirate. He thinks he is Jake the Pirate and that his Vision teacher, Jenny, is also a pirate. He talks like a pirate when he talks about Jenny.
9. He loves school and loves to learn but really struggles and gets angry and says he cannot do it any more when he has to work really hard. 
10. He is a great bowler
11. He LOVES to ride bikes and loves to have friends and loves to be where people are. 

The questions that Rachel at This journey Our life asked are below: 

Questions for nominees to answer:
1.  When did you embark on your special-needs parenting journey? (share your child’s diagnosis story)

         This will be the quick version because we have it written out ( twice) by both of our perspectives soon after it happened. But around May of 2005 we found out we were pregnant. I have endometriosis and was told I would probably not have any kids or would have trouble conceiving but he was a welcomed surprise. After the shock wore off, we realized we would be getting a Christmas baby and jammed a semester of school in while I was pregnant. I had complications from the start and the pregnancy was VERY hard. We found out the first of September that we were having a boy and less than 21 days later he was born. He was 25 weeks and 3 days.  He suffered a IVH grade 3 and 4, hydrocephalus, ROP and a spent 93 days in the NICU. Since, he has been diagnosed with Cerebral Palsy, hydrocephalus, is legally blind and has some sensory issues, developmentally delayed and has speech issues.  He is now almost 8 and in the first grade. 

2.  How do you balance spending time with your other (non-special needs) children? (if applicable)

      We do have another baby. Lucky for us, when we decided to have another baby we had massive secondary infertility issues. At the time, I didn’t think it was “lucky” but it has allowed me to be Grayson’s mom because Ty is in school a full day. We take Grayson with us to all of Tyler’s appointments and he loves being with Ty. He tries to keep up with him and wants to do everything. I often feel a little guilty that I don’t get as many activities to do with Grayson because with Tyler we had therapy 3 times a week. We had people in the home for therapy and fun music classes and we don’t have those with Grayson. Grayson is also a very hard baby. He tends to be a little more needy so I do feel a little frustrated when I don’t manage everything just right. But we are happy he is here. And as far as adding more to make me have to manage better, that won’t be happening. I had a hysterectomy in December, so I get to just relish the last of my babyhood with Grayson and enjoy the journey. 

3. Share an act of kindness someone has done for you or your child.

    The biggest one for us was being nominated for a Make a Wish trip last summer. Tyler wished for a trip with Mickey Mouse on a pirate boat. Because of his visual impairment the trip was just what we needed.

 But, on a even smaller but more significant act of kindness was when Tyler was invited to a birthday party. The little boy, Jake, was in our ward ( our church boundaries) and he brought an invitation over to our house and Ty was able to stay there all by himself. He was welcomed in by his mom, Christi, and he had such a good time. He has never been invited to another party and it really made my heart happy. 

4.  What is one thing you want people to realize about your life as a special needs parent?

     We have a few people in our lives that have Chronically ill kids. And while we see the struggles they live with they are not totally disabling conditions. There is no damage done to their brains or their eyes. They can, and most likely will, go on to life a fairly normal life. With being 7 and still not able to use the bathroom, we don’t have any idea how he can live on his own. He can’t make his own cereal, he can’t take care of himself while we run to the store. He can’t change the station on the TV to something. I am doing all of it for him. I dress him, change him and entertain him. Even while riding a bike, with his visual impairment I can’t just let him go. Someone has to be there to watch for cars. The “normal” things are just not possible for us.  While most things are just normal parts of life, most anything outside our daily lives have to adapted. People don’t always want to make the changes with us and we are left out. A LOT! Raising a child with extra needs is lonely and there isn’t much support by means of others not playing the “my kid is sicker than your kid” card. There are very few that get it. And don’t judge what you don’t know. There is a lot of judging when it comes to our choices at parenting . 

5.  In what ways has  raising a child with special needs affected your relationships/friendships? 

You tend to lose your “normal” kids friends. But you gain, and tend to gravitate to a few really great friends who are walking in the world you do. My best friend, Stephanie, lost her child but still seems to understand what I am feeling and why I am feeling those things. She is always there for me. And my besties Amy, oh what a life saver she is. Her husband and my husband were best friends. They have a child with Autism and I NEVER feel like I am alone when I know she is a call or a message or a Facebook chat away. 

As far as my relationship with my Husband we have really had to work at making it work. We were told the night after I saw my baby for the first time, that this would either make or break our marriage. We have had years where everything is awesome. There are times we really struggle. But we have found we HAVE to date. We need to date more than anything. The need to have time together, talk and make the right choices for our whole lives has to happen but the only way it does is by dating. If not, that is when it is REALLY hard.

6. What brings your child the most joy?

EVERYTHING. Ty gets so excited about the smallest things. He loves movies and buying a new movie would make you think he just won the lottery. Bringing him home a soda from the gas station is like Christmas. He is seriously such a awesome kid!

7. If you could describe your child in three words what would they be?

Loving, Smart and Stubborn

8. What aspect of your child’s special needs has been the hardest to accept?

His vision is really having a bigger toll on us. Realizing that he can’t see what we thought he could and that more things needs to be adapted than we thought has been really hard. Some of the things said in his CLVE were so hard to hear. The other part is accepting that we JUST might not be able to have him life on his own and be married with kids. But that is far in the future. For now and for the current time, his vision is the hardest. 

9. If you and your child could take a dream vacation where would you go?

We DID take a dream vacation, but knowing how much we loved it we would love to go back on a Disney Cruise. There are many things that we know now that we can make his experience even BETTER by doing it again! 

10. What’s the most important lesson your child has taught you?

The biggest lesson is love. He knows no hate at all. Nothing. He understands being left out and being sad, but he doesn’t understand when people are being mean or saying mean things. He doesn’t care. He just loves. Innocently loves. It also turns into innocent faith. 

11. What advice would you share with a parent just beginning their journey of parenting a child with special needs?

I would tell them that no one knows that your child will do. No one knows what things will happen. No textbook will tell you anything. Ask a lot of questions. Read and read and read. Cry when you need to. Take a break when you need to. Take a break from therapy if you need to and most of all, you are doing the best you can. If other’s want to judge you, let them. Your shoes are full. They are uncomfortable to wear and they aren’t always cute. No one wants to wear them. So do the best you can. Oh, and it’s OK to have a bad day. It’s OK to feel negative and it is OK to be a little angry and hateful and bitter for a while. It gets different and easier to deal with. 

A video!

Tyler is the cutest thing EVER!!!

Happy Birthday!

Today is my best friends birthday. He is the MOST amazing best friend a girl could ask for. I honestly feel like I am the most luckiest person in the world. Here are a few reason why I love this man!

He is Tyler's Hero. His best bud. MY best friend.

A protector of all things. His strong arms and hands are always ready to do the protecting.

He has gracefully lived up to the challenge of having a special kiddo. He has learned how to move him, help him and make him be better. Watching him father this special little guy has made my love grow TEN fold.

After shunt surgery placement it was HARD. Tyler was never happy. He was crying all the time. I was losing my patience. This picture captures them perfect. He is so calm, gently and caring no matter what. They have a look about both of them. When they are together my heart skips a few beats.

He is my best friend. My world. And he holds OUR world in his hands. I couldn't ask for a better partner in life than Dallas. I thank my Heavenly Father for giving me Dallas EVERY single day.

Dallas is unselfish. He always has been. He always puts Tyler and I first.

After we moved to Arizona we were solely relying on each other. There were times that he would come home only to work all night to get his business going. In fact he STILL does that. He got a job here in Utah because he was unselfish. He has worked hard enough in the last 4 years of our marriage to keep me home with Tyler. He has put so much extra effort in that he has made a successful business and we ALWAYS have what we need.

Now back in Utah he is even more my best friend. There is not a moment that goes by that I don't miss him when he is gone to work. He is there when I need a hug or a sounding board or a place to vent my frustrations and anger.

He is Handsome. Oh is he handsome. I smile when I look at him. I LOVE his dimples. I love the way he looks at me and smiles. I love when he taps me on the shoulder to smile at something that Tyler is doing. When I look into the eyes of my child, though they are blue like mine the soul is that of Dallas. It is Caring, loving and unselfish to!

He is supportive. His house is looking like a craft store and he NEVER complains because he says it makes me happy. During my Grandfathers funeral he was there holding my hand and giving me comfort when I was sad.

He is an amazing father. Though all circumstances were not in our control when we were in the NICU he has proved time and time again that he is the best father that I could ask for my child(ren). He has proven that he will step out of his comfort zone to be there for me and our child in any way he can.

He trusts me. As a wife and mother he trusts my gut instinct. A few times it has failed us but he never loses that trust in me. He always listens when I say something isn't right.

Most of all he is mine for Eternity. No matter what happens in this life he is mine in the next. He is a strong and worthy priesthood holder in my home. He is loving, caring, sweet, gentle, understanding, protective, a father and a provider and most of all he is mine.

D, I love you so much and hope that you have a wonderful day. I can't thank you enough for traveling this journey with me. I love you... even without lap band :)

He is my Brave Hero

I cannot tell you how amazingly brave and strong my sweet 4 year old is. I was listening to a song tonight that about sums up my feelings.

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son

The feelings I have had this week have been a HUGE roller coaster as they always are around the times we have any kind of procedure. I half laugh because jokingly said " it isn't brain surgery" and we have HAD brain surgery ( a lot) yet it still makes my insides and my anxiety kick into gear. The feelings of helplessness, defeat, and for me a lot of guilt get thrown in as I watch him go through ONE more thing and know that it isn't the end.

The morning went really smooth considering our early wake up. Ty was actually still asleep when we were ready to go. Which is GREAT and helped with the no eating issue.
The roads were pretty good as well until we got into downtown but we made it just in time to check in.

Ty was a pretty happy camper and we got him all set up to watch a movie and get ready for the paperwork to come. When we got there and they were ready to put a hospital bracelet on he FREAKED until we gave one to his Barney.
Shriner's has a bag of stuff ready for all the kids on their bed and the puppy was in it. He was in love. The kid currently has a zoo with all the stuff they have given him this last week. So he is all ready with Barney and his puppy watching a movie.


When we asked them to put a bracelet on Barney they even wrote his name. ( man I should be a child life specialist cause I had all the answers for my kid... OH WAIT... I am)
The vitals are pretty tough for Tyler as well. He cries when they do them. I have no idea why, but again I got the bright idea to have Barney's done and Ty complied when me and Ty did Tyler's where they needed the stethoscope. It was kinda nice to not have him cry. ( yet)
The docs were taking forever ( not uncommon in a specialist hospital or appointments) so me and Ty went on a wagon ride, all over the top floor of the fun hospital. Seriously. Shriner's is a pretty happy place.

As we headed back we started consents and talking to Dr. Gooch and the surgical team. And then came the waiting.

They gave Ty Versed. It has never worked before but man did it work this time. He was so freaking funny. I would sing him songs and he would laugh and laugh. He was "telling" his dad he was a penguin and patting his dad on the tummy. It was funny. This is the hardest part of the day knowing they are taking away my baby. It NEVER gets easier. But we laid him in the bed and off he went. NOT A PEEP.. and I didn't cry because I knew he was not missing me ( that I heard!)
We ran down and got some breakfast while Ty was gone and headed back to the room.
A tid bit about Shriner's. Most of it is run on donations and from the local Shrine. They don't take credit/debit cards there at the Cafeteria. ( I didn't know) and they handed me the receipt and said oh well. That is what we are for. Seriously. So when we went today I remember a check book and was able to "donate" back.

We got back to the room and Ty was on his way soon. It seemed everything went well. We didn't get to see Dr. Gooch but saw all the rest of the team and have all of our therapies lined up and appointments for the next 2 months to see how this goes.
Anesthesia is kind of a a beast for Tyler. For and hour and a half he screamed. And yes I look mean and fed up but we did that for an hour and a half. I was blocking it out... BLOCKING... and I have bruises.


When we finally got him settled we were able to take him home. But before we did I asked the Lady to please give Barney casts and so she did. Barney had casts and was ready to go with us. Tonight Tyler wouldn't play with Barney unless they were off but he was pretty content having the same things as Barney.
Tonight was sponge bath and meds time and he was pretty tired. The next few photos are not GREAT but shows what we are looking at for his feet.

So the verdict on the feet and why we are doing this.

1. The phenol shots that were put in his gastric and abductors are to help with the tight muscles cause by CP ( or brain damage) by taking away the tight muscles we are hoping to encourage the not strong muscles to take over and help make his muscles some what normal.
   
2. Casting, after the shots helps us stretch the muscles that have been tight for a long time in hopes that the shots will work and do their magic and a more "normal" gait will arise
3. Casting will hopefully help future orthopedic problems. Look at his toes in the last pictures. They do not sit straight. They curve. That is a GOOD curve to normally how they look and it is WAY WAY worse and isn't suppose to be there .
   

Tyler is current unable to walk, and crawling is hard. He basically can't get around. Mom is his way of transportation and dad is his way of getting loves. It would be so helpful if family and friends would come buy, knowing he might be mean and unfriendly but show the support. He will know you are there. And from the mom stand point it shows you care.
Because he is totally dependant on me at this point I know I could use a few adults to converse with so I don't lose my sanity. I normally wouldn't' ask but I am asking for the help from friends and family at this time. Please come and help us out. I promise the favor will be returned.

And the moral of my story:
I love Tyler. I feel I have given up every part of who I "was" and was "going to be" in order to be his mom. More so by going to the therapy, advocating really loudly sometimes and losing "friends" in the process. I needed my son to have the best possible outcome for his sake. I will continue to do that, even it it does step on toes.

I love him more than anything.
The words of my song as I beg my Father in Heaven
Can you hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

I will and would take his place in a heartbeat.

T you are MY bravest of Heroes

Day of Thanks

What a day of reflection and Thanksgiving. I can't fully express my thoughts tonight to truly show what I feel. But I want to try. At least for my family to read and me to remember.

I am SO thankful for Dallas. He has changed my whole life. From the first day that he loved me he changed me. Nothing beats knowing everyday that he loves me and that he TELLS me. He tells me every day I am beautiful and because he loves me so well I feel it.

I am thankful that he is a good dad. That he loves Tyler and is such a support to both of us. He is very encouraging and really wants what is best for him. He works so hard for our family and he is my best friend.

I am so thankful for Tyler. So many amazing things have happened since he came into our family. He is the MOST most amazing special spirit I know. He works so hard to do the things that I take for granted. He has accomplished more and over come more in his 4 years than I and most people ever have. In the last 2 months he has soared with his language and communication. Because of that, other people are seeing just how smart he is. He makes me smile EVERY DAY. He has the most contagious laugh and the most gigantic spirit.

I am thankful for what he has become and look forward to the things he will accomplish. I am thankful for the team of doctors we have that work so hard to get him being his best and so thankful for the team of therapists that help him on his way.

Which leads me to my next thankful. I am thankful for my family and for the support that they have offered. Though sometimes we are at odds with what we think others should do overall its all about Family. It is about the caring and supporting of each other regardless of the circumstances.

I am thankful for Dallas' family. I am thankful for his parents raising such a great person. I am thankful for their support and love. I am hoping as we continue through the year that things will keep getting better and we can continue to be thankful for each other.

I am thankful for my friends. I have some great friends that are so supportive. I am thankful for how much they care about me and my family. I am thankful for those who have come into my life, if even for a season, I have learned from all of them.

Last but not least I am thankful for my faith and for the Savior. Learning and understanding the atonement of Jesus Christ and doing my best to live up to what I have been taught. Because of my Savior I have all the other things above.

Because of the of that I am the luckiest Girl in the entire world.

Tired with Little Updates

Ya know we are boring! I realized we don't do a lot of updating but I feel we are super super busy. There use to be a lot of preemie posts etc but we are kinda in a good place right now. We still have a lot going on but sometimes and most of the time things don't get so overwhelming. I guess that is a good thing.

So here is the best I could do for an update.


Nancy: We hired a new respite so I have a lot more time to myself. Some days it is nice but most days I miss Tyler and having my side kick with me. I was able to do some crafts this last week and I got my entire house cleaned and dejunked. It feels so good. BUT I am exhausted. We have been so sick here that I wanted the germs gone. We also got to go out with Dallas to dinner and a movie. It was fabulous. I LOVE our sitter. Kelsey is the best. I can't WAIT to have her be old enough for respite. She is great. I also got to rent a new lens and can't wait for my batteries to be recharged so I can go out during the week and really give it a try. So exciting. My first wedding shoot is coming up on Friday. Wish me Luck!!

Dallas: BUSY. That is the best way to describe him. He works so hard for me and Tyler. Since we got back from vacation he has done so much. He is currently editing a book for iphone stuff. So he is reading a lot and coding away. He is always so busy. We are so proud of him and all he does. He works so hard so we can be taken care of. He is such a good dad to Tyler. Those two laugh ALL the time.

Tyler: Is so stinking cute! The first 2.5 years were hard. VERY hard. I look back at some of the things we went through and right now I feel so calm. I am sure it wont' last and YES even with all the stuff we have going on I feel in a good place with everything.

This next week we are being evaluated for Apraxia of speech. While I use to freak out about some of the stuff we have to do or diagnosis that we get, this time I am not. I guess because at this point a name to the problem may or may not get us a little more help to get him talking.

Some things we have noticed since vacation is his desire to communicate. Because he tries so hard he seems to be getting his point across a little bit better. He is using the signs he knows and is using them correctly. He is using them without prompting and we seem to get what he wants really well. We have gotten one or two syllables out of him that weren't there before so we feel very encouraged.

He sat on the potty a few times the last few days but when we ask him if he needs to go he says no. We will get there. I know he is 4 and should be already we are so proud of all he does. He comes in the bathroom and gets his book and sits down and reads while he is on the toilet. So cute. We noticed how hard it is for him to get his pants down himself which is kinda a hindrance to using the potty but we did get Thomas undies on one night. Its a start.

School stars again in a few weeks and we start swimming lessons till the middle of October tomorrow. Its his first one alone. Should be interesting. He is a fish.

As a family we are spending a lot more time together and we love it. I love staying home. So worth it. I am hoping to get together with a old college friend. She seems to have hit the always getting bad news stage. We are enjoying the cool weather inside but the outside is starting to hit the over hundreds.

Everything else is.... well WONDERFUL! ( Even with bad luck!)

We won't die!

I seriously think this has been the longest and most horrible week we have had in a LONG time. I don't recall a time that Dallas and I have been sick TOGETHER ever, let alone this sick. It was so hard. I wanted to be in bed sleeping when he was in bed sleeping and I was such a baby about who got to sleep more. ONE of us had to be awake. We had a perfectly healthy little dude playing. Luckily, Dallas is such even tempered he was able to ward off my PMS spirit and smooth everything over.

It seems that we are on the mend. It has taken way to long and we are still a little on the down side. Dallas is still exhausted and would LOVE to sleep for another week. He has a lingering cough and is just as sweet as always.

I have a cough still and a LONG weeks worth of napping sounds fabulous.

Ty. He is the best. He is such a good kid. He is amazing. He has been so good and has been so even tempered. He is even more willing to come and cuddle with one of us. He has been so much fun. His respite should start back up this week. Because of the duration of the swine flu he won't be going to summer school but no worries. He starts back at school in a short 4 weeks. We have to cram in braces, eyes and a round of botox before school starts.

We have no major plans for the summer other than beating the heat. We need to hit up a few pools and take our dad swimming. He hasn't been swimming with Ty in a while. He needs to see how well he is doing. Other than that, we will stay in where air conditioning is welcomed.

We start a new respite person this week. Wish us luck.

Four years ago Dallas and I were married. I can't believe how fast the time goes, yet at the same time how long it seems. We had a fast engagement but we have had an amazing marriage. Mostly because he is such an amazing person and husband.

The day of our wedding I was waiting for him to get there so we could head to the church. He was driving with some friends of his and they were late from the time we had agreed he would be there. I thought for sure he would get cold feet and not come. It was always a joke that he thought I wouldn't show up but I was so in love with him.

I was so excited and so nervous. He was and is the man of my dreams. He is exactly what I needed and still need. He is so much fun. He is the best dad to Tyler. There is this little sparkle when those two are together. I honestly think that each day he falls more and more in love with that little dude every single day.

I think I fall in love with both of them. But EVERY single day Dallas does something that makes me sit back and think WOW. I am super lucky to have found him. Not a day goes by that he doesn't say I am pretty or that I make him happy or he loves me. He is always doing something for me and Tyler.

He works so hard for me and Tyler. He provides so well for us and we are so proud of him in more ways that we can ever name. Not to mention he the most patient person in the world. In a house of 2 stubborn people his patients is amazing.

The start of our marriage was pretty intense. Ty was so sick. It made us both rely so much on each other. There were times that he was a mess and times that I was a mess. They were never on the exact same day. Which made it work. He was always so cute and so tender and sweet holding Tyler. It made me smile everyday. He has always stood with me when we had to make hard choices regarding our family. He has had to listen to me worry and wonder. He has had to carry us through rough times. But he has always done it so tender and caring. Never has he been angry, upset or even mad.

One of the best characteristics he has is his ability to love. He loves me unconditionally. With out question I am very taken care of and very loved. I can say the same for Tyler. Ty watches every single night for his dad to roar at him and chase him down the hall. He looks for him every morning when he wakes up on his way to find mom. He grabs Dallas head to blow on his tummy. They are best buds. It makes me love Dallas so much more to see him be a father to his son.

I have made D come to more than his fair share of appointments to hold Tyler down. He has such a way with both of us to calm all fears right away. He gently talks to both of us. He never seems to be in a hurry.

Most of all. I can't think of a single person that I would rather spend eternity with than Dallas. I can't think of a single day that I don't think of him a million times. That I don't want to serve as my companion. That I would want to go through all of my bad luck times with. That I wouldn't want to have children with. And that I wouldn't want to love with all my heart.




I love you Dallas. Thank you for always taking care of me. For picking up my messes. For calling the insurance companies a million times because I can't stop hitting other cars. And for working so hard for our family. You are the best husband. I am the lucky one.

Our day

Today was a good day. Ty had school today. He had a BAD BAD night but was up and in the mood to get out the door and fast. He ate a huge breakfast and kept signing more. Finally after 2 full waffles I gave him a carnation drink that he drank most of. He also decided he needed his bum changed JUST as we were walking to the bus. Stinker :)!!

After he got home we ate lunch together, read a few books and hung out. We also decided to go out and put water in his pool. He had a great time. We spent over an hour outside splashing and refilling.

The afternoon was filled with movies, kisses and books and Dad.

These are the days that make it so much fun to be a mom. The house was cleaned and the boys were happy. It was so nice to have it all work together. It makes me realize just how lucky I am.

Here are the pictures of the day!!

He is a fish in the water. He has no fear. He can go underneath, over the top, where every he wants and his body follows in the water.




Laying down chilaxin... Getting ready to kick those legs.





.

He was not mad in this picture he does this scrunchy face when he is being silly. That is what he was doing. It was cute.


After he asked for his blanket he laid down because he was sad. It was almost time to get out and he was showing it.
The pout face. Poor kid. Lucky he was almost done!! He had a blast. This is Ty signing for his blanket. He was ready to get out and was sad because he was told he wasn't hurt. He is such a sweetie.

We all had a blast. We were happy people today. He ate like a champ and he mimics all of his dads actions. He is getting so big. We are so so proud of him.


When I finally fully started realizing that he is who is he. And he does what he does. And we work to get him to do things. Then I was able to embrace him. I am able to understand him. I am more patient when things don't progress. He is more of a miracle each day. I will always be so proud of him.

Lets go to the ZOOOOO!!!

* Sorry about the lack of correct sizing of the photos. I still wanted to make sure they were here for journal purposes.... click if you want to see full size and not cut off. Oh and the white stuff is sunscreen and in editing purposes have shown up. It was not there in real life.*

Yesterday Dallas thought we should take a totally random and fun trip to the ZOO!! We had a lot of fun and it was totally random but we had a great time.

The Phoenix zoo is privately funded so they try to keep the "natural" habitat of the animals. Not sure how natural it is to have a animal caged but they did a great job of keeping the park clean and it was very nice. (The Zoo in Salt Lake seems much better set up for kids who can't see so hot. Guess we will have to go see it in June.)

Because we didn't plan ahead to well we had to eat first thing when we got to the Zoo. We ate and got all sun blocked up (because we were in the high 80's) and headed off. First place we stopped was the Giraffe. It was close up for Dallas and I but we weren't sure exactly if Ty saw what we were seeing. He was blending with the background really well. I always keep some flashcards of animals in Tyler's back pack and decided I should pull them out as we see each animal in case he can't fully see them. He would point to the animal, we would show the picture. He would answer something back and we would ask him if he was done before we moved on. It was a awesome learning experience for him ( and us.. or me, on how to help him with his vision.) We were determined to get him to see some of his favorite animals ( the ones he does sounds and gestures/signs for) So we headed off to see the Rhino. The Rhino was close enough to see. Ty pointed and then he got scared. But he could see it.

The Rhino was pretty cool. He was huge and there wasn't much that you could have him mesh with in the back ground. Ty held on to the card and "talked" to us about it as we moved on.

The lion was out sitting on a rock but he was to far away and looked to much like his surroundings to really see him so we showed him the card, pointed, let him look around and waited till he said he was done.

This continued till we got to the baboon cage. The Baboon cage they were close enough that he could see them. In fact they were right up against the window. Once the crowd thinned out enough we were able to work our way up to the window and see the baboons which we called Monkey's given that they are in the same family.

Ty was pointing, talking and telling us that he could see it. He was showing me and his dad where the "monkey" was. He was very excited. ( and notice he is wearing his glasses. He had NO problem while we were there!!)

Another shot with him watching the Monkey. *no that is not blood on his hands, its pizza that he wouldn't let me wash off.... pick you battles wisely people*

The baboon that was up to the window. He was very content and it was pretty cool.

The next stop we went to the monkey cage. This is a place that they run free and you are on a trail with monkeys going all over above you. Being told to watch out cause they pee on stuff and poop on ya. They were in the trees, on the ground all over. They were a little far but we hoped Ty could see them.

While there a really nice looking zoo keeper lady was standing there and I asked if there was any way or any exhibit that we could get up close so that Tyler could see some of the animals we came to see. She told us there was an off exhibit of little monkeys she would love to take him to. She said we would meet at the elephant exhibit.

We got to the elephant exhibit kinda stunk. Literally. They had ONE elephant behind a HUGE fence and you couldn't see it. We were bummed. Then the zoo keeper girl showed up and took us to see these monkeys.

Here are the up close monkeys that Ty was able to see. There were three of them. They lived in a cage off the path of the regular exhibits. They were there because one of the monkeys had seizures.

We were really really close. We were right up to their cage where we could put our hands on the cage and everything. At first Ty was totally fine with the monkeys and they crawled around us and he was able to see them up close.


But then the monkeys started talking and making noise and he was all about having Dad save him. Ty is a little sensitive to the sounds of things. We are still working on that one. But he gave a huge hug to Dallas * which dad NEVER complains about* and he watched from afar. I was enthralled with these little monkey's. They are like the monkey's on friends. That people think are good for pets.

The last photo is the monkey that was the reason they were separate from the other Monkey's. This monkey is "different" and has seizures. He would be going about his business in the other cage and fall off while people were watching. They needed to keep him safe so he was moved into this cage. They have nets on the bottom to catch him. They have to put friends in with these kinds of monkeys because if they are alone they tend to go a little crazy. It was interesting to see that this special monkey came right up to Ty and just stared. That little monkey totally captured my heart.

My Hero

Dear Hero,

The day you were born was the day you became my hero. You are the strongest, most loving and most amazing miracle that ever entered my world. You are an inspiration to everyone who meets you.

As we have watched you grow, you have done more than you were ever suppose to do. Me and your dad KNEW you would do them. Our Hero has never given up and has pushed through it and done it all.

You make me smile when you hula dance with daddy. When you ask for ice cream because Barney has one. When you give your daddy kisses because Tiger gives kisses. You keep my heart in you hand when you climb up on your daddy and you fall asleep. When you get home from school and head right in to his office, even if he is gone, and sign dad and fish.

I fall deeper in love with you when you pretend to be a flamingo. Or when you take my hand to show me what you want. I fall deeper in love with you when you sit at a table like a big boy and have "conversations" with your daddy and I without saying a word. I love you when you smile that smile and you make that belly laugh. When you lay down ad raise your feet and ask for piggies. When you take rocket with you so you can be brave. When you ask for mom to trace your numbers with you. I love that you work so hard at therapy. That you work so hard to try to say words and communicate with us. You walk like a big boy and you are the best big boy I know.

How can a spirit like yours be trapped inside that little body? How could that little body change me so much. YOU ARE A HERO.

We know that things will get hard. We know that things will hurt. Remember, you are a hero and you will always be a miracle. You will always be my little boy. You will always be my hero.

Tyler.... A hero. That is what you are. A hero.
Courage doesn't always roar. Sometimes, courage is the Quiet voice at the end of the day saying.." I will try again tomorrow."

Botox and Tyler

Yesterday Tyler's docs office called to let us know that they had a cancellation for botox TODAY! We had our appointment already setup because she is booked forever and ever and ever in advance ( like six months) but we were waiting on our insurance. Luckily it got approved and we were all set but a move up in appointments was even better.

Dallas and I decided we would go and get it over with. It is so hard to know that we are subjecting him to pain and suffering but we know that in the end it will be good for him.

We left just after noon and had to stop and get something to eat. We decided on the Mills so everyone would have something that they wanted. We stopped at the pet store so Ty could see the dogs. We ate and then headed into the office.

By the time we figured out how to get in and had to turn around a few times we were ten minutes late. We walked in and the over nice office staff freaked and told me we were canceling his appointment and it would be MONTHS before we got in again. I got mad back. My momma bear claws come out when doctors staff treat people badly. I got really mad at the lady.

We left in plenty of time to get there on time. There was construction AND they called us and wanted US to come in. The change in plans at 5pm the day before doesn't give many of us time to change schedules and get everything together. Ty had therapy scheduled etc. So if you want ME to come in for you be a little flexible.

The desk lady went and asked the doctor if she would still see us. Which our doc did but we would have to wait to the LAST appointment of the day. This is the kicker. He pretty much WAS the last appointment of the day and we didn't wait more than ten minutes. This doc is seriously the hardest to get a hold of. Between us and our brace guy it took us 3 weeks to get in touch with her to go about getting the right kind of braces and casting for him. Seriously, I was such a mad momma.

I apologized to the doctor. She talked to us for about five minutes, we settled him on his dads lap and she went at it. 2 shots, right in the top of his calf muscles. He screamed, tensed up and we were done. He bled a little but got band aids, which he pulled off as we were setting up his follow ups. Then we went home. Another plus, we did get Dallas an appointment there for his neck. Maybe he will get botox as well.

I was expecting it to be A LOT worse and was glad that it went as well as it did. Ty is a real trooper to do all he does. He is a great kid and has the best disposition.

The ultimate blog party 2009

I was trying to decide if I should participate or not in the UBP 2009 and after reading a few I really thought it might be really fun to get to know more people.

So, here goes my intro post. I hope that you browse the archives and come back often.

I am a 28 year old mommy of one. I am married to the love of my life for almost 4 years. He is a senior web developer for Paypal. Two years ago when we were offered the job we were moved to Arizona where we currently live.

I blog about our live as we live it. Our son is the main focus of our blog. Tyler was born at 25 weeks and 3 days gestation. ( He was 15 weeks early) He was 1 lb 11 ounces. He spent the first 3 months of his life in the NICU.

His premature delivery has had a huge impact on all of us. Shortly after birth he suffered from a brain hemorrhage. He has had a heart condition repaired. He developed hydrocephalus due to his brain hemorrhage that has left him with a shunt. He also has ROP an eye condition that causes the retina to detach from his eyes. He developed nystagmus, or fast movement of his eyes. He has also had 2 skull surgeries to correct his craniosynostosis.

Now that he is 3 we deal with a myriad of issues. He was diagnosed with Cerebral palsy, he has low vision and he has a shunt in his brain. He attends school and loves music. He is happy and smart.

He still gets all kinds of therapy and has very limited speech. In the last year he has undergone 2 emergency shunt revisions. He is a trooper and such a strong little boy. He is very determined and makes us smile every single day. He is the best thing that has happened to us. Being a mom is the most rewarding thing that I have ever done. Being his mom is the most amazing thing I have ever done. Having a support system like his dad around is one of the best part of this journey.

We have seen a million miracles. We plan to see a million more.

All Because Miracles Happen






* Please go on over to UBP 2009 and take a look at all the amazing mommy bloggers out there. Try and look over all the prizes ( like that gift certificate for target.) There are to many to name but go and see for your self.*