Utah Trip Continued

The amazing El Zaribah Shrine here in Arizona are the ones that take care of the out reach clinic for Shriner's. We LOVE them. We always enjoy the clinic and all the fun stuff they have to offer us and for all the fun stuff that they do while we wait. But the best and most amazing part of ANY Shrine is what they provide for us.

After setting our appointment with the Shriner's Hospital we got our travel plans done by the El Zaribah. Meaning, they make AND PAY for our flight. They fly the patient and one adult. Grayson is free ( but not for long) so we were able to get to Utah at not cost to us. Dallas had to work so it wasn’t a huge deal but we miss him and wish he could go with us next time.

Turns out, Utah got the dates wrong so we had to make changes to our flight dates and they were amazing and we got to stay around for a holiday weekend which made it a little easier to see both grandparents AND get our procedure done.

We flew in on Monday . We were picked up by our Aunt Nicky Poo. We dropped her off at work, took her car and went to McDonald's. Ty played and played and MIGHT have ate a little. Grayson did the same. We picked her up and went to our grandma and grandpa’s Browns. We were happy that we got to stay there and have some extra time with them. And we had awesome beds.

Tuesday was Ty’s procedure. They put him totally out for these because they are almost to the bone and VERY painful. We got there and we were getting prepped to met with everyone. Nicky kept Grayson for me, so it was a great chance for one on one time with Ty. We met with Dr. Gooch. She doesn’t agree that we shouldn’t do phenol. She thinks he responds well, does great and that even if he has dystonia then we deal and get his muscles under control. She begged us to not start clipping yet though.  We agree are with her second opinion a lot.


We were able to convince them to NOT give Tyler Versed. He literally becomes this VIOLENT, VIOLENT, little boy that pulls out IV’s and kicks and basically beats the crap out of everyone, including me!  They agreed and said we could try it without.

I got Ty dressed in his little gown and his little bum was showing. I went into the bathroom and came back out and Ty had disappeared. He started walking around the halls and happened to wander into another persons room. Her name was Breanna. She had been there about 2 weeks. Mind you, the hospital doesn’t have LOTS of people or rooms so Breanna had been feeling pretty down. Her parents were both there. Breanna had to have her spine fused a few years ago and was having complications with them. One had to be taken out and she was losing a little bit of her ability to do the things she wanted.

As I went looking for Tyler I heard a sweet voice saying, “ My name is Tyler Brown. I am seven. I live in Arizona.” I went in to save the poor people from my child. I was met  at the door by Breanna’s mom. Ty climbed up on this girls bed and was laying there with her. The mom burst into tears and the dad just stared. I thought, “ Seriously Tyler you can’t just do whatever you want. Sheesh.” As I was ushering him out, Breanna asked if he could stay until he had to go. I reluctantly agreed.

When I got back from taking him into surgery her room was empty. She was able to go home. We got a little note from her mom.  The note said that Breanna had been really down and had asked for a blessing helping her to understand how she could be OK with losing some abilities. Her dad said that he felt very impressed that she would find the answer, but he told her he didn’t know when or how. Her mom said that as Tyler was walking around talking to them, Breanna saw Tyler as a answer to her prayers. The mom said that Ty was exactly what they all needed and the reason they asked him to stay was because they wanted his little spirit to be with them as long as they could.  When Ty left Breanna got released and she told her mom that if he could be brave and do hard things, she would work super hard to do her best.

The nurse that took care of us said that she had never met a little boy quite like Tyler. I have to admit, neither have we. Ty is one of a kind. When he was small people would stop and say stuff. We always thought that he was cute. I mean COME ON! We made him. When we had Grayson, people still stopped us. But people still stop us about Tyler. He draws in EVERYONE. He is polite, kind and most of all he NEVER complains about his situation. I do. I do a lot, but never a word is uttered from his sweet spirit.

On the way to surgery me and Ty were wheeled by the basketball court on the upper floor of the hospital. ( Yes you read that right... a HUGE play room on the upper floor of the hospital) He was quickly fixated on going to go play basketball. We went into the waiting room and he got a hat and we talked about what was going to happen and how much I loved him. I told him I loved him to the Mystery planet and back. He told me he loved me to the mystery planet and back and that he was going to visit the moon and come back to him so we could go play basketball.

The second he said he loved me to the mystery planet and back I lost it. I  can’t imagine what I would do without this little boy. My sweet baby. The mystery planet is not even far enough away to show him how much I love him. But he was telling me all about the stuff he was going to do on the moon. That him and Chicka were going to have a bubble gum nebulizer and they were going to fly to the moon and get rocks and come back out and play basketball.

Soon they came in and took him from me. My heart broke. I let them have him and I went to breakfast. Nothing tasted good so I headed back to the room. Decided to take a nap and wait for my Super Hero to get out of surgery. Faster than I imagined, he was back. They left the IV in his hand this time so he had to wait to go play basketball. They said that they have only heard about going to play basketball.

After about 20 minutes and a little bit of begging from Tyler, they checked to see if he could get out of his bed and head out to play ball. 20 minutes after surgery and my son, who had stuff done on his legs, is now going to be going out and playing basketball.

We played for a few minutes, then went and got him lunch and then played some more. He butted into several other games in which he quickly won over the hearts of other people. We packed up our stuff to go and Aunt Nicky brought our brother to come get us. We went to her place to let her dog out and to take a small walk around. Then headed up to have a quiet evening with his Grandparents.





Tyler did so great. He is so amazing. He has YET to complain. He tells me that his legs feel all better now. I have watched the bruises go away  but watched the way he is walking and I cringe, but know that it won’t last forever.

The next day, was suppose to be the day I got some stuff done at 2 colleges and didn’t. So we are doing them all from here now. The rest of the week, will be up soon.........

How do I raise my child?

A Mormon family in Utah has been putting their son’s journey of a terminal form of Muscular Dystrophy. The boy, Mitchell, was doing great. But quickly his position changed and they found that his disease was killing his heart and fast. While working on getting an LVAD, they documented his last  few weeks, and ultimately his last few days and hours. His father documented the journey in amazing and heart wrenching photographs. What I wonder, was how this mother was and did, raise her child knowing and teaching him about dying? How did she do it with strength and dignity? Of course, I wasn’t there behind closed doors, but the questions still looms, how do you raise your child to die?

Today we had an opthamologist visit for Tyler. We truly do love our eye care team and Tyler, especially, LOVES his vision therapist and teacher at school. He calls her Jenny the Pirate. We had a terrible, TERRIBLE visit with an optometrist ( there really is a HUGE difference)  a few weeks ago but we knew that we just needed it for a  few things at school. But this doctor, Dr. S, is different. He is a retina specialist. He deals with ROP and kids like Tyler. He is very good and very through. He is also very bold and very honest. He never sugar coats things and we are able to get good information for what we need.

Tyler hit a growth spurt the last few months. He really has put on some weight, and grew bigger. While that is a blessing for us, it has wrecked some havoc on his body and his conditions. One thing I didn’t expect was that his eyes would be affected by him growing. This recent growth spurt has caused him to  become more near sighted. We knew that as he got older that he would have a harder time seeing. But I thought when he was 18 or 19 or older. Not 7 or 8 or even 50. The reality is, I never thought he really would get “worse.”

His script went from -13 to -16 in a year. Correction doesn’t correct his vision to even legally blind. He is amazing at compensating and he has great “functional vision.” We have done all that we have known to do to keep him seeing. We make sure that his ability to get what he needs is done. But we do not know how to stop or slow down the progress of his ROP and his nearsightedness

(This is what 20/500 vision is. Tyler has this picture WHEN CORRECTED!! So WITH GLASSES)!

For Tyler, we still see the opthamalogist every 3-4 months. They are still worried about his retina’s detaching and him going totally blind. The older he gets, the better he will be at telling us that something is wrong with his eyes but ultimately it will be with the follow ups that we catch it as early as possible.

What hit me hard, was how do you raise a child to become an adult that will not be able to see?  How do you teach him about all the wonderful things that there are in the world, yet he sees none of them? We are teaching him a song about all of the wonderful things that Heavenly Father has given to us, yet he is denied seeing them?

For today, I am sad. Today I look at photographs taken from amazing people, who see and takes photos of amazing things. I want to pack them all into a short time so that Ty  can see EVERYTHING. Experience everything. Even with the  limitation physically, I want him to see everything he can. I don’t want him to lose what vision he has.

What I selfishly, don’t want him to not be able to see, is me. I am selfish. But he is my baby. I want him to know who I am.

How will I  raise my sweet, amazing, miracle to grow up blind?

Well Child Check

My baby has graduated to be a well CHILD and not a well BABY. Where has the time gone. I can't believe he is 5! I had his appointment just a few days after his birthday. I was not looking forward to taking him because I knew he needed some shots. I had "delayed" them, not because I didn't agree with the shots or I was worried he would get sick but because I didn't want to deal with him and the shots.

But, I love his pediatrician and love her Nurse. Plus we hadn't been in for a really long time. They hasn't seen that Tyler could talk. ( They are on my facebook but when you hear he is talking, until you HEAR it, it is hard to believe.)

And the BIG reason. I do not/did not want to hear that Tyler was to little. So I was crossing my fingers that we were not to little and that he wouldn't scream through the whole thing.

Off we went. Ty was really good. He walked the whole way. When we got there they asked what his name was and he answered "My Tywer." Then the nurse came out. He nicely stood up for the weighing and then put Mickey Mouse down for his weight. We couldn't get a blood pressure because that caused MASSIVE meltdown.

As we went through the list from last well "baby" Tyler has really come a long way. She asked Tyler if he knew his shapes and he told her all of the shapes and the alphabet and then showed her he could jump.

The good news was short lived and we really had to discuss his weight problem. I am glad he is not overweight, but really I cannot get this kid to eat enough to gain weight. He is picky, he won't eat even if he is hungry if he doesn't like the food. He won't drink milk so carnation is out of the question. We do EVERYTHING we can short of a tube.

He is so stinking little. He is in the 1 percentile for weight and 3 percentile for height. So he is short and skinny. The concern they have is that he is WAY skinny. Like think little weight lifter. All you can see is his muscles because there is NO fat on his little body. You can count his ribs and see his shunt tubing. He has dropped 4 pounds since July.

So Ty gets to be on weight watch AGAIN! The good thing we didn't have to go on search for the flu shot and we have officially gotten all of our shots. We need to see all of our specialists( think 6!! Lucky us!!) in the next 6 months and schedule another round of phenol and some casting and a CT scan. We are hoping now that Ty is talking the eye exam will be somewhat better. Might not be as traumatic as it generally is. (We still get followed every 3 months.) Oh and we can't forget the dentist.

In the Middle of the Night

With the bus incident this week I have had a HARD week.

Hard.

Not only was MY emotions out of whack but he wasn't feeling well. He had Rotovirus since last week and just hasn't felt well. Thankfully that resolved before sending him back to school on Wednesday.

My emotions, however, were not getting better. But a realization of so many things. A self reflective kind of emotion.

The night after Ty was forgotten on the bus I was awoken with the very distinct memory/dream or thought to say a prayer. I don't know why and I don't know what I was suppose to say a prayer about but given my experience in the past, strange ideas come to you in the night and you better act!

Ty got up soon after that and it was early. We went downstairs and started a movie and got breakfast for him. I laid on the couch and the thought came again. So I acted again.

I was laying on the couch ( I am not kidding.. it was EARLY) and my thought was "Maybe you know how it feels to not hear from your child. Yours was 40 minutes. When was the last time you talked to me."

And the "idea" was shocking.

I pray. But how long as it been since I have really prayed? How long has it been since I realized just how important Tyler is and how many blessing he brings to us. That with the trials he is the ONE thing that is the most important for Dallas and I.

The panic of NOT having Tyler here was more than I can bear. He is the sun and the moon. He is the world to both of us! Never again do I want to feel like my world just got turned upside down. In doing so, I need to remember where I came from and be thankful. And share that thanks.

Give Thanks. Hug the ones I love.

And Tell them often.

I love you.

What is going on in OUR world!

I feel like updates .. like what are we doing updates have been kinda missing. So, here is the stuff that grandma likes.

This last week was parent teacher conference at school for the Little dude. We have noticed this term he has done a lot of changing. I was excited to hear what was going on. And then in true ME fashion.. Guess who forgot? Yep. Me!

Thank goodness his cute little teacher, Miss Holly, sent home a little worksheet that they fill out so they have an outline and stuff written down. We also got his updated IEP and it tells us how well he is doing on his goals.

Miss Holly's questions :" In the classroom we observe Tyler hanging up his own coat and backpack. He can now transition to all the activities without throwing a fit. He plays well with other kids and loves to share toys with them." ( That makes me feel sad because he DOES love other kids. He loves playing with my sisters kids and because of me he doesn't have any siblings to play with)

"In the classroom setting we have observed new skills emerging in his communication skills. He has really improved this year. We have been working REALLY hard on colors and shapes and he is easily able to recognize them." ( Ty CAN and does recognize his colors and shapes and his "talking" is doing much better. Though our Vocabulary is very very limited he still seems to get his point across.)

"In the classroom we have see that Tyler has challenges with: Tyler has his challenges to overcome but he works so hard that they are not challenges for long. He is such a hard working kid!" ( We couldn't agree more!)

" My favorite thing about your child is that he is such a hard worker. He is really anxious and eager to learn. I love when he surprises us with what he knows."

It is so nice to see him advancing and doing well. He even has accomplished a few of his goals. He sits at the activity AND DOES the activity for more than 4 minutes ( huge for him!) and he follows directions above his tested level with no problems. Which again, is HUGE considering his expressive language sucks. He is using his vision better, and uses his strategies to finish his work. He can identify most letters and is working on finding them in complex backgrounds.

The most favorite and exciting to read was how well he was doing and how much he has improved in his gross motor skills. At the beginning of school ( OK in November) he was walking 750 feet without assistance, and 250 feet with one hand assist. ( They measure by 1000 feet) and in the 1000 he had 2 falls. In Feb. he had 1000 feet independently.

A functional speed of walking is 50 feet in 13 seconds. So his goal was to hit that functional speed. He walked 50 feet in 63 seconds. ( this was his baseline) He is slow. In November his speed was 50 feet- 27 seconds. So he improved. In Feb he did 50 feet- 20 seconds.

He went from staggering 3 times in a 100 feet trial to falling or every 500 feet with staggering around 100 feet. So he is still unsteady but he is able to correct most of the time . Some games he plays is Simon says, hokey poky, ball, and jumping. He does need stand by assistance in MOST gross motor games.

So that is Tyler. I feel bad he doesn't have any playmates but what do you do now. We are so proud of him and all he does. He is so cute. He loves the bus and he loves going to school. I am so happy with the improvements we have seen with him and his shots and casting. He is due for more in July.

Ty is doing really well. We are proud of him. And we think he is really cute.

*scroll down for a giveaway and SIGN UP!!*

The Guilt

I have guilt.

The selfish kind of guilt.

Some days it is easier than the next.

Other days it is so in my face that I can't help but break down and actually have to face it.

I feel guilty that I put my son through hell.

I feel guilty that all of those scars on his sweet body I allowed them to do .

The thousands of mini burns on his eyes, I signed a paper that said they could do that.

The battle wounds that grace his perfectly round head I allowed them to do that.

I watched day after day while he was on a ventilator, praying that God would give me MY baby to take home.

I prayed for him to live.

I asked others to pray for him to live.

I am selfish.

Yet every day I look at him and wish it were easier for him.

I take him to therapy.

I give him kisses.

I read him books.

I make him laugh.

He gives me kisses.

He makes me laugh

And I love him.

I am selfish.

Way back When- Wednesdays

I needed a place to link people back to our story. Since we are not on the same blog we were on then I thought I would start from the beginning and Way back When is what will happen..

SOOOO Our story. WAY BACK WHEN:

This was written by Dallas when we were in the NICU. I was kind of out of it and not up to par so he started me a website for Tyler. This was the second post. The first was just letting those who saw it ( which was like no one) that we had Tyler. This was his experience that night.

This all started two nights ago when Nancy started feeling cramps at 25 weeks into her first pregnancy.
The next morning (yesterday 9-20-05) she called her OBGYN and reported having some cramps and some discharge.
She was told that since there was no current cramping just to watch it.
Then at 8:00pm she started having really bad cramps which turned out to be contractions.
Around 10pm she started vomiting and the cramps got so bad that I insisted we go to the hospital.
So we took the drive to Alta View hospital.
When we showed up in the ER we were automatically taken to the women’s center.
After some tests the doctors found that Nancy was completely dilated and the sack was protruding.
They also found that the baby was head up, so they called for Life Flight to take her to either LDS Hospital or the U of U Hospital.
Life Flight showed up however they were unwilling to take her since she was fully dilated, because they have a rule that they do not transfer if the woman is dilated at a 6 or above.
Therefore Life Flight and the doctors argued back and forth in front of us for a good hour, each trying to convince the other of their recommendations.
They were getting ready to finally decided to take her when the doctor decided to take one more look.
He then found that the baby was coming right now and she could no longer be transferred.
Life Flight therefore left and they prepped Nancy for a c-section.
Once the original Life Flight left they called in the newborn Life Flight specialists and the doctors took her into the OR. (I was unable to accompany my wife since they had to put her to sleep.)
The baby was delivered at 1:24am, bottom first.
The baby was rushed into ICU where he began steps to save his life, including chest compressions on his frail little body.
By this time the new Life Flight had landed and was helping the doctors stabilize Tyler.
Once he was stable enough to transfer they pushed him into the room with his mother for a quick glance and a Priesthood blessing.
They then rushed him to the helicopter, where I helped them load my new baby son into the Life Flight helicopter, and then watched them take off to LDS Hospital.
Then I went in and briefly talked to my wife and then headed to LDS Hospital.
When I arrived he had already landed and they were taking steps to stabilize him again.
After a long wait they finally allowed me into the NICU to see my son after landing.
There was my first and only child, tiny as could be hooked up to all types of equipment.
One of the nurses kindly sat with me and tried to explain everything that was happening.
At 6:30am they made me leave and so I therefore headed home after being awake for 24 hours straight and having a roller coaster of emotions.
Once arriving home I was unable to get any sleep as my emotions and worries once again overtook me.
It is now the afternoon after this amazing and terrifying experience and I have yet to get any sleep.
I have visited my wife again and from all reports mother and son are doing as well as can be expected with the baby being this early.
This is a miracle that is still in progress. Especially since when we were first told we were having the baby this morning we were also told that the chances for the baby’s survival were not very good.
I was later told that my son is a fighter and that is a great thing and that his chances were now at about 80% that he will survive.
Since he is so early he is also unable to create his own red blood cells and therefore with the loss of blood and the blood taken for tests, I was told he would have to have the first of many blood transfusions throughout the next few months.
His blood type is O+ and we thank all that donate blood, and especially thank the unknown people whose blood Tyler has and will get.
I would also like to state that the Women’s Center doctors and nurses at both LDS Hospital and especially Alta View Hospital were SO amazing and so thoughtful and helpful.
We ask all too please keep our family in their thoughts and prayers, as we still have a long, expensive, and tough battle in front of us, with at least 3 months in the hospital.
If all goes well we hope to be able to finally take him home around Christmas.

His version is a lot of what I remember. He doesn't post some of the details that he has since remember or always did remember and didn't' want to share. His journaling of that experience has been so amazing for me!

So stay tuned. We have a LONG story to tell.

What will it be like?

Ever since I had a little baby smaller than a barbie laying in the NICU I often wondered what he would be like. No one can tell you exactly what and how your baby will be in the future especially when we were looking at is severe brain damage ( grade 4 bleed = brain damage). It didn't stop me from asking though. I am on a few online support groups and that is one of the FIRST things a new mom of a 23 and up weeker will ask. What will my son ( or daughter) be like in the future? When will they hit such and such a milestone? And sadly the answer is no one knows.

When we were our that is what I wanted to know. I wanted to know what he would be able to do. As we started getting bigger and we missed milestones or hit them but hit them late it was hard. But we were happy for each one that was hit.

But the life long question persisted. What will he be like when he is 3 or 4 and now I wonder what will he be like when he is 15 or 16.

It doesn't really matter, but I wonder what others will think. Will he be teased? Will someone hurt him? I hear horrible stories of children who can't defend themselves and can't talk and tell others what is happening. It makes me scared.

But then there are stories that make my heart so happy! On the Morning show a clip was show about a grown man with Cerebral palsy. His walk was really bad. It was obvious that he had something "wrong." He was basically told around age 5 that there was nothing else anyone could do for him. And then he found Dancing. It changed his life.

Then as I was watching I saw THIS! ( It won't let me embed it... so PLEASE click) This is a senior in High school who has Cerebral palsy. He is on the BASEBALL TEAM. He is a pitcher and he is one of the best ones they have. He is like Jim Abbot the one handed pitcher. He throws and catches with the same hand. His twin brother has severe Cerebral Palsy and can't walk or talk and is confined to a wheelchair. Mark ( the pitcher) says that his brother is his inspiration. He has it so much harder.

Though I know Ty won't have a perfect walk and that he is impaired, he does walk. He LOVES playing soccer and loves throwing balls. I have no idea if he would want to dance, but I know he can do whatever he wants to do.

I know that by pushing him with the therapy and encouraging him he will be the best Tyler possible. I wish a million times over that EVERYONE could see him as we see him. Doing what we see him do and being the funny, and cute and amazing 4 year old that CAN do anything!

The man at the Grocery store

I always thought I would know what to say. Always wondered if I would be witty, smart mouthed or even offended. I even wondered if anyone would say anything.

Of course that was when he was tiny. When he looked just like any other little baby. ( minus a few battle wounds on his head and oxygen) But he looked just like any other kiddo.

After Shunt surgery we often had looks or stares, especially when we had bad hair cuts done by neurosurgeons but really not many people come right out and say something or ask. Usually it is a point and a whisper or a loud look at that.

Sometimes in the store you have a nice old lady who tries to get Tyler to talk to her and he usually just waves and no words. A quick explanation that he doesn't talk but his name is Tyler usually suffices.

But not yesterday.

While we were waiting in line ( at the SLOWEST lady in walmart) A man started talking to Tyler. Ty was unusually friendly and started kinda babbling to him. His babbling isn't really "words" or even sounds of words but one sound. The man was very nice and kept trying to engage Tyler. Then came the big question.

What is wrong with him?

It was innocently asked. And I surprised myself. I wasn't even remotely upset or offended. In fact it was refreshing.

His question started about his eyes ( like I said we were really in the slowest line at Walmart) He asked if Ty's eye was a lazy eye. My explanation: " No he is almost legally blind so his eye moves to compensate for some of his eye sight being damaged." He asked how it happened. My answer again was simple.. He was born way to early. His questions persisted. I explained Tyler was born just under 2 pounds. The man looked at me and said,

" Wow, I have never met a mom raising a miracle."

He turned around and told another lady behind him that Ty was one pound when he was born. He was so proud to share that MY kid was a miracle.

A few blog posts that I have seen recently has had some really mean things regarding feelings of raising a special kiddo like Tyler. YES, my child has many disabilities. Yes, as we get older he "looks" like he has many disabilities. Some days I am fine with it, other days I could do without our *issues.* But just like a stranger, my son is a miracle.

Every single milestone makes me smile. Every single missed milestone made me cry. He is a wonderful kid and is doing so much. I am thankful for the things he is doing and hope to see him grow and learn and advance. Will things still make me cry? yep! Will I still wish for talking and long drawn out sentences? Yep! I won't ever stop hoping for that day when he does all those things that I dreamed he would do.

After 4 years and million tears and a long walk in the world of Holland I can say that the trip has its beauties!

Did you know that I am lucky enough to be raising a miracle?

Ask the guy at the grocery store!

What is best

There is always something in the back of my mind that makes me question more than once. In fact ever time a major medical decision comes up I have that something that comes back to question. I wonder have we done what is best?

Most of them came second nature. Or really first nature. In labor at 25 weeks, knowing it was to early there was never a doubt or a wonder or a time that either one of us questioned what was right or what we should do. It was always we will do what we can.

Next came the bleeds and again that nagging thing in my head said are we doing what is best? The odds were against him. A Nurse practitioner talked to us and said that at some point if he was done fighting we would know. He would get infection after infection and sicker and sicker. He would make the choice for us. Till then we fight with him.

And so we did.

There were a million things that we have had to make decisions for. We have had to listen to a list of disabilities. We even said we would be ok with him being in a wheel chair if we had to. The list of choices go on. The choices also come with regular typical kids but these are the above and beyond those. not just the idea to not vaccinate or not bottle feed. It is things like do you give him a blood transfusion? Do you fight for more therapy? Where do we get the money to buy the braces? How do we get from point A to point B?

But we had said we would be ok no matter the outcome. One thing that I didn't know at that time was how hard it would be.

That doesn't change my love for my child. It does make me question a million times over am I doing the right thing for him.

Coming up in a few days is a big step to cerebral palsy management. Botox did a little bit of good but no enough long term. Baclofen is not an option right now so we are stepping it up to the next level.

While upping the stakes we are doing serial casting. We are putting phenol in Ty's gastric muscles to give them a break so that the underlying muscle can start to work better and correctly and his abductors again in hopes of getting is gait or walk more "normal." While making this choice to help him we are also making a choice for him. once that I wonder at times is will HE think this is best.

I feel so over emotional when it comes to my sweet baby boy because he is my world. I have loved watching him the last few weeks. We have seen some amazing strides and Dallas and I have had our very first real conversations with our child. He was and is the love of our life and the reason we get up ( so early) every morning. I am so glad I have him.

I just wish that voice in the back of my head would agree and not second guess anything or make me wonder if when he gets older will he be made at our choices. Will he thank us for doing them. Will they make a difference.

A voice of sanity and a peaceful feeling is what I am looking for this week!

We are doing what we think is best.

We fight because babies shouldn't have to!

November 17th is prematurity awareness day. For the month of November we have been blogging our journey with prematurity and blogging for awareness. The theme of the March of Dimes this year is one that I can't help but be passionate about. This year they are using the phrase "Fight, because Babies shouldn't have to!"

I fight because Tyler and millions of other babies shouldn't have to.

Prematurity is the leading cause of Death of American newborns. Those who do survive often have life long challenges.

They fight everyday.

Tyler was born at 25 weeks and 3 days into my pregnancy.

94 days before he was suppose to. That means he fought for 94 days to live so that we could take him home. But the fighting hasn't stopped since.

He fought through a Patent Ductus Arteriosis, Grade 3 and 4 brain bleeds, Chronic lung disease, Retinopathy of prematurity, PVL, Cerebral palsy, hydrocephalus and craniosynostosis. He has been shunted, endured countless hours of therapy, bracing, brain surgeries, heart surgery, Skull reconstructions and low vision. All because he has had to fight. All because he came 94 days before he was suppose to.

I fight because every day we struggle with food, sensory processing, cerebral palsy, high muscle tone, no words. Every day I fight to help him lead a life that is less challenging. Everyday I try to do one thing that would make his world easier.

Everyday I try to tell our story so that ONE mom never has to feel the guilt I feel for not making it those 94 MORE days.


I fight so no mother has to wonder what she did to hurt her baby.

I fight so no mother has to question whether support should be withheld.
I fight to get accommodations made so that Tyler can be a participant in EVERY activity!

I fight because Tyler can't.

He has his own battle to fight. He is a hero. He is fighting every day. He attends those therapies that we take him to, he listens day in and day out at the boring letters and words he hears trying to get him to speak. He fights everyday to put one foot in front of the other with out falling, all because those 94 days he came to early left him with Cerebral Palsy. Everyday he fights.

I fight to help others understand that we need accommodations made so he can enjoy life to the fullest. I fight to find ways to help his processing disorder be a happy place instead of a lonely one.

I fight because of EVERY MEDICAL ADVANCE and ever MODERN DAY MIRACLES we can't figure out a way to keep a women pregnant LONG enough to save these babies from disability and death.

We have put a man on the moon for Pete' sake. We have found water on the moon. We are transplanting organs into children and adults, yet we STILL can't find a way for a woman to give her child a FULL 40 weeks of pregnancy to SAVE HER CHILD from a life of disability.

I fight because I love a preemie.

I fight because he is mine. And he deserved nine months. And I keep fighting because he deserves the best.



I fight because I want my next child to have NINE MONTHS

I fight because I am raising a miracle.

I fight, so he doesn't have to!


We fight so THEY don't have to.



Please, support us in your blogging and face book status and twitter messages. Fight4preemie so they don't have to! We would especially like to see our family out there showing their support for the Miracle that happened in their life on Sept.21st and who every single day shows courage to be the best Tyler he can be!

FIGHT....... Because they can't

Preemie post coming up...... INSURANCE and cost of prematurity

I started my blog for many reasons. I have had a blog since the day that Tyler was born. I updated it regulary. It was something that was easy to have and easy to keep updated. It has seen been closed but I have saved the updates and can go back to almost any given day and read what happened that day while in the NICU.
After a bit I changed to a wordpress blog and documented for a long time before coming over here. Blogging is therapeutic for me. It also allows others ( like my mom) and our family from far away to keep track of us. It was also a way for me to put our story out there. To met and find other moms in the same boat and to have questions answered.

As time went on that is how I have kept it. As a way to share, information, allow my mom ( and Nicky) to stalk me and yet still have the therapeutic part of blogging out there. Having a blog also opens you up to criticism. I don't mind criticism and a nice discussion of opinions.

That said (please be kind) a few of my preemie groups are up in arms about funds and donations given to certain people. While I don't have a problem with people donating. ( it is their money after all) I do have a problem when I feel like some information never gets out to the people who are donating.

So, I wanted to tell a little story about our Financial difficulties then and now with having a child born as a micro-preemie and now having a child with special needs.

We found out we were pregnant around May. I had insurance and was covered 100 percent. I was double covered. There were no out of pocket expenses. Then we had a "life change" and suddenly we found ourselves in a position where Dallas was not employed and I was losing my insurance. No insurance company that we could buy would cover me because I was all ready pregnant. Dallas got a job. I applied for medicaid. We were denied over about 50 bucks a month. So we just went with what we could. I was a student and so I bought the health insurance plan offered to students. It would cover a pregnancy with pretty minimal cost.

We were poor, struggling, students/newlyweds. We were not expecting what we got. Dallas had a good job and I was able to get a job at the same place. I went into work one day and was told that our department was downsizing. I was the last one hired. I was layed off. I was ok, because Dallas still had his job and I was in school so we still had my insurance and his insurance. A week later he was layed off. This was the first part of September 2005. The company we were working with kindly said they would allow us to keep our insurance till October 1st and then we were on our own or paying cobra. We still felt we were fine because I was only 21 weeks pregnant and covered under the insurance at school. Things were fine.. Things were fine.

Fast forward to the last weeks of September. September 19th, I woke up that night not feeling well. Sept 20th my doc said take it easy, it was nothing. Sept. 21st at 1:24am it was something. A 1 lb 11 oz 13 inch long little boy. No bigger than a ruler and skinnier than a pencil. And we owed 20 percent.

Ty was lifeflighted to LDS hospital, stablizied and this is where we started our medical journey. Once we were dropped from the insurance from Dallas job we were kinda in a panic. But something that doesn't come out often in reading about micro preemies is that babies born under a certain weight automatically qualify for social security. Social security guarantees these babies medicaid. Fact if the matter is.. these people will get their money. There is no way anyone can pay 20 percent of what it costs to keep a 25 weeker alive. There is no way.

This was written October 2. 2005:
Today we got the first "bill" for any of Tyler's hospital fees. This bill was for his Life Flight from Alta View Hospital (Sandy, Utah) to LDS Hospital (Downtown SLC). The bill is for: $9,009.14!!!!! Now this statement says "do not pay this amount" so I am assuming this is the statement before they bill the insurance company. So I don't think we will be asked to pay this amount, but we will see...


This was not for any real service JUST getting him to the other hospital safely.
While at the hospital for Tyler we received level 4 NICU care. The list, not including procedures like PIC lines and transfusions because there were to many to count in those first few days. But major procedures.

1. PDA heart surgery
2. Head Ultrasounds
3. ventilation 93 days worth
4. life flight transfer by helicopter and life flight transfer to PCMC by ambulance
5. Reservoir placement
6. multiple eye exams followed by surgery on his eyes

All of the procedures the doc charges you, the anesthesiologist charges, the hospital charges then Ty's day to day care. So his diapers, clothes, food, meds etc.

After Insurance was over in October we had nothing. Hence when the medicaid kicked in we were ecstatic. We knew that Ty would be taken care of. We still had multiple visits from the business managers there and billing people but there was nothing we could do. Those bills would reach over a million dollars.

Our cost and medical drowning came from me. I was not covered by medicaid. I was not covered by anything but cobra and my meager health insurance plan by the U. They don't cover some of the things that I had to do. We were able to pay for cobra but again you have a portion of that that you have to pay along with the premiums.

For me alone we owe ( and still do owe) somewhere around the 50-70 k mark. I still get bills that the U insurance didn't cover that we didn't know about. I had to have plastic surgery to close my c section, I had a wound vacuum keeping it closed. I had to have nursing care. I had to have a breast pump for Tyler. We weren't made of that kind of money.

What we have found though was that we could let the medical bill eat us. We needed to live. Our day to day living expenses are what caused our financial woes. Dallas was not working. He had been laid off. We were living off what credit cards we had and what we could bring in. Until I had my C section fixed I couldn't work. But I got a job right before Tyler came home to help us make ends meet. Dallas was doing contract work after contract work and we were staying afloat but barely. We would pay off part of our credit card and have to use it again just to put food on our table. We were paying for Gas to get to the hospital 2 or three times a day. That is where we saw our expenses coming from.

As time went on and we had Tyler home we had other expenses. Because he got medicaid for the first year do to the above mentioned social security our formula was covered by WIC. Dallas got a new job and we had great insurance where we paid 20 percent. BUT when medicaid ended for Tyler so did the "free" health care for him. The stuff we paid or have been billed for included shunt placement, shunt revision and 2 skull reconstructions. The last reconstruction alone was 90 k. 20% percent of that is a lot. That is just the surgeons portion. We owe for scans taken after his reconstruction because Dallas had a new job in Arizona so we were no longer covered.

Before moving to Arizona we put together our debt. It was large. It had ruined our ability to purchase anything on credit. This is including a house or a car. We have had me work to pay off some of the debt but we are no where near being out of medical debt. We will have it forever. BUT the day to day living is not like it was then. We don't' worry about that medical debt. We don't worry about that doctor who is still pursuing us after 4 years. Why? Because we can't. There is no way to pay it off.

Moving to Arizona was a hard move for me. Our medical insurance here is SOOO much better than Dallas and I could ever ask for. His work insurance, though an HMO, has been great. As long as I make all the necessary calls and make sure all the needed paperwork is done ahead of time we are fine. We pay extra to have the upgraded insurance instead of getting it in the check each paycheck. It has helped us a lot to have it covered. We have yet to have to pay more than our co pays.

For Tyler, because of his diagnosis of Cerebral Palsy and his vision we are able to get DDD insurance here. Which is basically medicaid. So Tyler is double covered. Why? Well at some point without medicaid children will cap out. He will cap out. He will have a max payout at some point. Brain surgery gets expensive. We may go YEARS without one and then do 2 in a year, like this year. It helps him get services like therapy that usually gets denied in an HMO.

HMO's don't think that water therapy or PT in general is beneficial to a child with cerebral palsy because it is a life long condition. But with his DDD services we do get them and we get what we need. Along with his DDD services we get respite care and other care for him.

So why the long post?

While people do need help in their day to day living with children with special needs, what you read on the Internet is not always what it is made out to be. Yes, financially it has ruined many people. Us included. But we made the sacrifice and moved to a state that allowed us to have better insurance and better state insurance.

We save babies at what cost? It doesn't stop when they walk out of the NICU. It doesn't stop when they are suppose to have caught up by age 2. 9 specialist for one small little boy doesn't stop if we didn't have insurance. I would be homeless to give him that care. There has to be something that works in this country.

Those living in socialistic health care countries don't have worse care. Is it the best for us? People say that they have to wait hours and hours for care in these countries, We waited for 9 hours for something that could have potentially been life threatening. Is it really "better" care because we are here.

I think it is great that people are able to get donations and feel the need to ask for them. I don't feel the need to. If someone like The Doctors want to give me 40 k I would gladly accept it and pay off what is left of our debt so we can keep moving forward. But I feel that Ty's story and his struggles and most importantly his triumphs are ours to share without reward.

Someone once made the comment ( who has a 24 weeker) that everyone should have a Tyler. And that is how I feel. I want to share him with the world. I want to be a advocate for children like him. I want to be a support system for the mother and those going through the NICU. Not asking and begging for help.

We love our son and we are and would go through financial "ruin" if you will to have him hear with us. We would and will continue to do all we can to afford his care and get him the best.

That is my soap box.. Get all the facts. Get all the information you can before sending money to people you read about over the Internet. If you feel inclined to donate, donate to the local NICU. Give them gas cards to give to the parents, give food to the food bank, make care packages. Those little things would have helped our financial situation way more than anything.

Soap box over... if you made it this far.. you get a cookie!

Hugging Tyler even more

Yesterday the news in the valley reported a newborn baby, 2 weeks old, that was bitten on her head by her family dog. She died at her home before help got there. The mom put her down for just a second to go to the bathroom. I can't imagine what this poor mom is going through tonight.

It makes me reflect on how much I love Tyler and how much of a sweet spirit he is. That God entrusted me to be his mom. That he trusted me enough to know that I would do my best to take care of him.


Makes me think about the role I get to play as a mother.

A Quoute I found that helps me realize just how my role plays in the whole plan

Motherhood - The Highest and Noblest of Work in this Life!

Elder Russell M. Nelson on motherhood:

“During my professional career as a doctor of medicine, I was occasionally asked why I chose to do that difficult work. I responded with my opinion that the highest and noblest work in this life is that of a mother. Since that option was not available to me, I thought that caring for the sick might come close. I tried to care for my patients as compassionately and competently as Mother cared for me.

Many years ago the First Presidency issued a statement that has had a profound and lasting influence upon me. “Motherhood,” they wrote, “is near to divinity. It is the highest, holiest service to be assumed by mankind. It places her who honors its holy calling and service next to the angels.

Because mothers are essential to God’s great plan of happiness, their sacred work is opposed by Satan, who would destroy the family and demean the worth of women.” Russell M. Nelson, “Our Sacred Duty to Honor Women,” Ensign, May 1999, 38

Although I have not lost a child and can't know exactly what this mother is going through, I feel for her shattered dreams of "what if's" and the grieving of what they "Should" be doing. But nothing is compared to her loss right now.

Ironically we were walking across the neighborhood a week ago and their house had a gorgeous yellow flower on it. I took a picture. It was a long day and that flower made me slow down and think.

Hug your kids tighter tonight. Love them. Remember why we had them. Kiss them and say a prayer for this mom.

Yes, he is ok!

Whenever there is a surgery and his little brain is involved I always wonder about what personality changes or "damage" is or has been done. If this is the time that we will see a change in personality.

Well, to put every one's worries at ease... Ty is doing great.

Here are some photos of the last few days. It is easier viewed than to find words.

This is Ty the morning after we got home. He had a good night in his own bed and woke up a little sore but happy. I love his face!

We have found him on the couch a lot. He is a monkey and climbs up on it. But he does sit down and just hang. It is so cute to come in on him just sitting and singing.

After we got home from Therapy today Ty was in singing songs with his dad. Seriously, how could you not fall in love with this face.

He has not let that balloon out of his site He loves it.

What kid doesn't love Thomas. Though he doesn't love him as much as Barney, Thomas is a new fixture in our house.

Even Thomas needs kisses.

A few exciting things that we have noticed. First is his eating. He has increased his appetite ten fold. it has slowed down a lot but when he is hungry he is HUNGRY right now. Just like he was a baby. Like zero to STARVING.

Second, is his babbling and signing. Ty signed sleep and pointed to a blanket in Dallas car today when he was upset. He pointed to the store we were at and signed food. He ate when we got in there as well. He babbles all day and he sings so much. Meaning he actually tries and mimics the sounds that they make and if he can't get them just right he makes sounds that sound like the sound. ( that is a lot of the word sound.. but it I hope it makes sense.)

We are very proud of him and very proud of how brave he is.

Honestly, Miracles Happen....

Home Again!

I am amazed at how quickly Ty bounces back after one of these things. I do have to say this one is a little more involved in his tummy so he is not walking to hot. He walks like an old man really.

OK so here is the run down at the hospital.

Ty got sick, puked a bunch of times. We got to the hospital and got right back because of the fact we "thought" it might be his shunt. We immediately got back to get some CT scans ( immediately means 2 hours) and the doc in the ER thought is was probably just his lungs.

The scans came back with an enlarged ventricle. They sent us for an xray of his tummy which showed his tubing. The tubing had broken at some point and the bottom of the tubing, at some point, had stopped allowing it to drain.

As soon as the radiologist saw the broken tube our neurosurgeon was called and he came in. I headed home to grab the things I would need to sleep over and Dallas did the waiting. I got there after they had taken him in to surgery.

We talked with Dr. Elton after the surgery and waited to go back to recovery where we were met with a very very mad little dude. I didn't hold him in recovery just because of the extensive stuff done on his tummy.

So the medical part. The tubing had fallen to his tummy and they were not able to get it out without risk so they left it in. They shouldn't pose to much of a risk ( but this is Tyler) and we will get an ex ray of them in 2 weeks to check out where it all is. Because they were poking in his tummy it is VERY VERY sore.

He slept pretty good and was doing really well last night. After being up and down for a few hours this morning I finally asked them for some morphine. They gave it to him and he slept soundly for a few hours. Mom was awoke by all types of people needing to verify who they were touching ( even if I had been there all night and it was their 3rd time in )

He is up and moving ( slowly) tonight and we are so proud of him. He is eating, holding it down, dancing, jabbering and almost back to Tyler. He wants to walk but he is pretty sore so we hope it heals fast.

So the new and fixed (again) Tyler .

This is his head scar. He has it in the same place as his Craniosynostosis scar.

Showing his happy face and his leads. He has a hard time letting them take any tape off at the hospital. He screams. Instead we just bring him home and shower him and take them off Pain free.

Sporting the new dew. He just had it cut all cute and short. Now it is gone. There is not a bit of it left.

His new tummy scar. It isn't as bad as some of his others. It is not in the same place as his old one because there was already some scar tissue and it would have wrecked havoc on his bowels. (Thank goodness for small miracles when it comes to his neurosurgeon)

Him happy in his chair at home with mom and dad.I can't wait to get my house back in order and cleaned.

Ty sporting his Thomas balloon that we went and got at the gift shop. He deserved so much more than a balloon but he loves it.

In the end I am so grateful we went in. That we listened to that voice and anxiety that was there. I wish a million times over I was just over reacting. He is a miracle and we love him and we will keep hoping for more miracles.

Thank you to those who offered support by calling and texting. You are amazing.

Christmas is in the air!

Today was such a great day. Ty was such a good kid and he is a walking and "talking" miracle. Ty and I spent his would have should have birthday doing a million things. We had a great time!

In September I wrote a grant for donations for Toys for Ty's therapy place. It is going to be filled during the new year but till then we were given $100 dollars to start it out. $100 bucks is hard to spend when it is someone else's money. So yesterday Ty and I went shopping for toys to donate to his therapy.

This morning we went to therapy and we took all the toys to be donated to them. He didn't stay around for the donations but I was able to help them. The therapist were THRILLED. Ty didn't cry when he went with Rachel. What a great accomplishment for Ty!

After we went to a rail road pizza place. He has had a strange interest in Trains lately. I lifted him up so he could see the train and he LOVED it. We ate pizza and then headed into the city.

Ty had his rehabilitation doctors appointment today. It went VERY VERY well. It is so weird and awesome to hear them say how wonderful he is doing and how well he is doing given his diagnosis. We asked a lot of questions about procedures and how botox would work and even the phenyl. The doctor was so surprised she was not his "normal" scheduled doc but he was so "unique" she came in to see us.

For a 25 weeker she even called him chubby!

Afterwards we headed home and when his dad got home we played in the tub, played and loved on him. He is so sweet.

Tonight we got the house cleaned up for the millionth time this week and tomorrow we are cleaning.

All of the presents are purchased, wrapped and ready for a happy 3 year old. He has LOVED the tree. He decorated it with Crayons sometime this week and I have been picking them out of the tree.

This year has been such a awesome year. We look forward to the next few days!

Merry Christmas!



p.s. sisters I MADE THOSE!! even the tags. I know who is this crafty lady... I don't know....

The Preemie Experience

With a HUGE disclaimer and hope that hate mail and hate comments don't happen here or on other sites.

Every preemie experience is different. A mom to a 25 weeker or below is going to have a MUCH different experience than a 32 weeker or a 34 weeker or even a 35 weeker. The preemie experience is different for a 28 weeker than a 25 weeker.

That said: I LOVE Tyler with all my heart and we have so many good days and lots of laughs and happy smiles. This "poem" was a very real description of the experience I had.

I do not resent my son. I do not HATE the experience that we had. I do not feel it was the most positive experience of my life. I do feel that I have a right and even a desire to show both sides of the coin. Most days in our house are happy, positive and we are THRILLED with our child.

The Preemie Experience By Sandra D Moore The preemie experience is the shattering of all your dreams For a normal, healthy delivery, Of the ability to carry home a beautiful squirming bundle After a short stay in the hospital. It is lying there in your hospital room listening to The happy sounds of whole families joined Together by the birth of a grandchild, cousin, niece, Or nephew, and knowing that your Child is miles away and may not survive long enough For you to see or simply touch. It is that first glimpse of a skinny, scrawny, not much bigger Than a Barbie doll child And feeling, fear, awe, and joy for such a fragile soul. It is sitting by your baby’s “bedside” day after day, Week after week, month after month, Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!” And the lows of “I’m sorry, Mrs. Moore. Something has Shown up in Lauren’s ultrasound,” Or even “There is nothing we can do…” It is hearing the alarms go off for the twentieth time in less Than fifteen minutes because your Child’s heart rate keeps hitting zero. It is watching children dying around you, wondering if Your child will be next.It is hearing your child’s cry of distress as the nurses Insert yet another IV and do another Round of daily blood tests.It is meeting other parents of children who are doing far better And wondering, “Why me?” And meeting parents of children who have just died, And praising God for His mercy To your child and feeling guilty because your child is alive And someone else is grieving for theirs. It is days of nightmarish testing and coping with less Than positive results to the tests. It is days of joy at seeing the first eyelash appear, The child gain a whole ounce in one day, And two bright shiny eyes look at you and into your soul, And knowing that your child now recognizes you as Mama or Dada; Or perhaps looks at you and does not see you at all… It is that final hurdle before coming home! It is the sorrow of waiting for the monitor company Representative to show you what to do If the alarm sounds when your child is choking, Gasping for breath, or simply dying. It is the joy of just being away from all those nurses And tubes and wires and beeps, and Walking into the nursery you hastily prepared because, after all, The child wasn’t due for another three months! It is thinking the nightmare is over…only to realize it still Continues in the form of Such acronyms as PVL, RSV, BPD, CP and numerous others. It is the final realization that those developmental delays Have to be dealt with, That reflux is a normal and unfortunate occurrence in most preemies, That the constant fight to gain weight is in direct proportion To a preemie’s ability to do so. It is watching a child struggle to pick up his or her head, sit, Crawl, or walk. It is witnessing only silence when the child should be babbling, Because the child cannot hear. It is the mental images of a child running and playing And communicating with others in a Perfectly normal manner that are marred when you face years of therapy In order to simply get the child to eat by himself or herself, To talk or walk and then run. The preemie experience is a journey… A journey through your soul in order to find the faith and strength to cope, A journey of the mind when you face the emotional weariness, A journey of the heart…to accept that, no matter what, This child is yours, And you will love this child no matter what.

As prematurity awareness comes to a close there are so many things I wish that I could share. So many things I wish others could see. So many things I wish people could experience so they "get" me

In the next few days I know that we all think of the things we are Thankful for. I do the same and as I sit next to my Miracle child I think of all the wonderful advances that have kept him here. I think of all the 1st we did get to have that we didn't think we would.

I am Thankful for my Family. For my son. For all he is to me and the faith that he has taught me.

One of those Days

I got a phone call this morning from a lady I met when I first moved here to Arizona. We started at the Foundation for Blind Children at the same time. Her child was younger than Tyler. This poor women had no idea how to navigate the system. She was grasping for information. It was hard to watch her but at the same time it was interesting to watch her gather information and learn to navigate through the ups and downs. She was also learning to fight with everything she had to get her daughter help.

The phone call was so sad. She finally got a diagnosis for her daughters delays. The diagnosis was so horrifying for her that she couldn't handle it. She was not sure how to handle it. She wanted to blame someone. She was convinced that because of someone else she know "suffers" the consequences. She wanted to know how I handled getting "the diagnosis."

Her daughter was diagnosed with Cerebral Palsy.

Tyler has a diagnosis of Cerebral Palsy.

It really got me thinking. How do or did I deal with the diagnosis?

It took us a long time to get someone to actually say the words. No one sat down with us to tell us that this is what we have and this is what it means and this is what the end result is. No one has done that.

While we know what we have and what we see on paper we don't know the end result. I know that for me it was hard to get the diagnosis. I was expecting it a lot sooner than we got it. Mostly when he didn't start walking. I asked about it alot when we were little and we never got anything. When he didn't walk I knew. But in the end I thought the diagnosis would change something.

It changed nothing.

I can't blame myself for it. There is no doctor stepping up and saying that they did this. There is no one that created this and we just happened to have to learn to deal with it.

It didn't change anything. My son is still Tyler. He is not the little boy with CP, he is Tyler the little boy who is walking when he wasn't suppose to. He is the little boy who is funny and cute and gives great hugs, oh and he has Cerebral Palsy. It is not who he is .. He is him. CP is just a part of him.

In the next few months we are embarking on the journey to help us rehabilitate Tyler and make him be the best Tyler he can be.

I didn't know what to say to that mom when she asked if I was angry. I am not angry. I am not angry because I knew that this was Tyler and CP was secondary, Tyler is the ONLY person who can beat this. He is the only person who is going to tell us what the outcome will be.

This......This is what inspires me. It makes me wonder what Tyler will do to become THAT. What will he long to do.