Cast Removal

We got our casts off!! Hooray! The summer has been SO long. To top it off, Grayson is low on Iron. So the last few weeks have been extra hard.

We got to our appointment and got right in. We visited the casting room with Adam, the ginger casting dude. He was happy to see us with no more mold on our feet. He was especially happy that no more water was in our around our casts.

 And the saw was incredibly loud. Grayson was a bit not OK with them on his brothers legs but it was cool to watch them take it off. 

That is Adam, cast dude, cutting off the nemesis of our summer. We were hoping and praying that there was no more mold. 

When we got his casts off we looked at his STRAIGHT feet.. that is right. Straight feet! And then started pulling off the other gaze that we added on his REALLY gross feet. When we got to the tape, I knew some thing was wrong.  

 Casts off both feet. Steri strips left to look under. 

 The black stuff is the mold that left a black/green stain on his feet that hasn't  come off yet. 

The black/green is the mold on this foot as well. It hasn't come off. There is still some left on his skin.

This is where things got a bit interesting.  The steri strips were coming off a little and this gross GREEN thick stuff was all over his steri strips. Adam, the ginger worker, went to go get the doctor to come and take a look at it and yep. It was just like we thought.  INFECTION.......

 Steri Strips were taken off and it was GREEN 

 Iodine was out around it and we washed it off. It was still weeping really badly. 

This is what we are left with. A gaping hole in his leg that is nasty and gross and runs the length of his bony shin. 

We took X-rays an his legs look amazing. His X-rays looks amazing. The surgery looks amazing. But his sore looks awful. I asked if it was because of the mold. She didn't come out and say it was my fault but because I let him get moldy feet it IS my fault. So the mom guilt has set in. But I am the wound care lady. And that means I am the one that gets to rip off a band aids on his feet. It hurts him. It hurts him and it breaks my heart.

After our appointment we headed off to the Orthotic place that makes our braces. They put back on 2 casts... YEP another set of casts. And took them off - HOORAY! as fast as we put them on!

Tyler was pretty patient and Grayson LOVES this office. He has THE BEST little boy toys in the entire world. Grayson never made a peep for the entire time we were there. He was great.

It feels good to have his feet off and he does get to shower. But no scrubbing his legs. I pack his wound 2 times a day. He is on an antibiotics 4 times a day and we go back in a week. A week for braces and then a visit with orthopedics and hopefully get the clear to start walking again.

This has been such a hard summer for us. We are glad it is almost over!

It's not easy being green....

Ty's feet had a rough go for a few weeks. Something about his feet were making a HUGE stink. We could smell him clear across the room. They were so gross. We tried everything we could. We even put him in his cast galoshes and put him in the tub and SCRUBBED... But we might have made the problem worse.

A few days after the big scrub down the smell got even worse. With a phone call to a friend in Washington DC a little bird put a thought of infection into my head and I called the doctors office. The doctors office blew me off three times.  Finally the last time they decided that we could come in and they would take a peek and see if maybe his casts had gotten wet or there was infection. I told them the stinky foot was the one where we had done the most work on his feet and his tibia, but that didn't sway them to take me any more serious.

After a convincing 48 hours of waiting ( meaning I called and left a message and it took 2 days to get back to me) I was able to get them to agree to see us right after lunch. The cast dude came in and got us and got us started in taking off the stinky foot to see what was going on.

Dr. Emily was summoned and I joke with her that we smelled funky but come on in... and then the big reveal happened. Tyler's foot had gotten so wet that his foot had some how grown mold all over his foot. Not just mold but black and green mold. It was HORRIBLE.

This foot has the most work done and the most plates and stitches that are under the casts and I was horrified when I saw what was under the casts. So was the Doctor.  She admitted him to get antibiotics for the afternoon while we got his feet dried and scrapped. He was one mad dude. 

The white stuff is the wet feet stuff. The black stuff is mold and dried blood and the green stuff is mold. We cleaned around his incisions. We re taped his incisions and she inspected his foot. She rubbed antiseptic stuff on it stuff on it, waited for it to dry and the other foot was taken off. A small amount of mold was on the other foot and we started the process again. Grayson was there and I didn't get a picture of the other foot but did get a picture of them working on him. 

After about 6 hours we were able to leave and go home. Tyler was put back in casts for the remaining 2 weeks. He opted for Green this time. He said it was for Oscar the Grouch. Not sure that he was really aware that green was GROWING on his feet.  In 2 days we get his casts off and as soon as we get  them off we run down to our favorite orthotic people and recast ourselves for a few minutes while we get our new braces done. Tyler has to stay off his feet until we get our braces off, but we are hoping we are able to at least start moving a little.

At least now we can "legally" have a bath and enjoy a bit of bubble baths while we get ourselves ready for school in 2 weeks!!!

9 years of Miracles

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

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

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

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

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

He is an ordinary miracle. 

January Surgery

January was not all fun and games. Along with a neurological change in Tyler, we chose to add insult to injury to the poor kid and do up his body for some major tune ups.

We generally do Phenol for his little legs but both our Utah doc and our Arizona doc wanted to make sure that we were all on the same page. We had to try some botox before they kept doing phenol. So we got our with our Neurosurgeon and got the ball rolling. We finally also got to a point where Tyler's retina's were stable so we needed to do some major muscle surgery to help his null zone. I was not ready for how bad the surgery on his eyes were and I broke down sobbing. His tears were bloody and he was so upset that he couldn't scratch his eyes and I cried because I am so sad that we have to keep doing this. But we sure were proud of how well he did.

He had to miss a week of school so we were at home doing lots of entertainment. He wanted to ride his bike a lot and go to the park, but with casts on his feet he was not loving that loss of independence. It made it a lot more work and him a lot more angry. We were already dealing with a lot of anger issues and it made for a long 2 weeks.

One of the days we were out of school and he was SOOO angry. He was so upset that he didn't want to do anything and he curled up on the floor right inside the door and he fell asleep. Grayson was so so hard with Tyler this week. He was mean and horrible and would hit him until someone ended up in tears.

The redness went on for a few weeks and is still read now but his eyes look so much better. The picture that I have below is from the back of my camera  and his eyes are straight. We are thrilled with the results of the surgery so far. Now we just need his glasses back.

One of the biggest bonuses that we had, we were home when Tyler's best friend came to town. We were able to go to the IDEA museum and see him and touch him. They were great to allow Tyler some one on one time to get up close and personal.

Tyler was casted for just over 2 weeks. It was a VERY long 2 weeks. Tyler was unable to do anything that he is able to do for himself. No showers, had to be carried, had to be in a stroller. It was hard. He is now in full legged braces. And seems to be doing well. We need to do botox again in April.

Jan. and Feb. were behaviorally very hard months. Tyler was sent home from school 2 days and he has just been very very hard. It looks like we are working on a few things to help him.

World Cerebral Palsy Day

Cerebral Palsy is  THE MOST common disabilities in children.

1 in 500 will be diagnosed.

Of those  diagnosed:

70-80% have spastic muscles. Which means they are stiff and tight.

1 in 3 are unable to walk

1 in 4 are unable to talk

3 out of 4 are in pain all the time

1 in 4 have epilepsy

1 in 4 have a behavior disorder

1 in 2 have some developmental disorder

1 in 10 have a severe visual impairment

1 in 4 have bladder control problems

1 in 5 have a sleep disorder

Tyler has Cerebral Palsy. It effects his walking and talking. He has epilepsy. He has anxiety and other behavior disorders that we are working on this year. He is developmentally delayed and has severe visual impairment. He has no control over his bowels or bladder and has a sleep disorder not limited to periodic limb movement disorder and the inability to turn off his brain enough that he seizes more 45 percent of the night.

There is not one “normal” aspect of his life.

There is no cure.

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.........

Spring Break

We had spring break a few weeks ago. ( Ok almost a month ago!) Every time I sat down to write I would hate it, erase it and then go to bed. So now that MORE stuff has happened and I am behind here are some photos of our spring break.

Ty wanted to go down on his back but his legs were NOT having it. A few more scoots and he had it.

The play place was awesome. It was called playtopia. I was glad the boys had on matching shirts and were bright enough to see. It was hard to keep track of them.

Grayson is a bit... um daring. He will do anything that Ty does. He will also do anything he wants to do.

He is THE most determined kid I know. He tries SO hard. He is my hero!

And this kid, well he is a handful and we LOVE him. He is very independent, and very smart!

The love he has for anything that keeps him moving and life in general, makes me SO proud of him!

But this small bundle of energy is a crazy kid in disguise. The smile is deceiving.

Sweaty and hot, but happy and busy!

Before we made it to the park, we had a happy fun lunch with our dad at the Tempe Beach park. The boys fed the ducks instead of eating pizza. But Dallas and I enjoyed our delicious subways and sitting in the sun. Ty was determined that he was going to throw rocks but there wasn’t many. Next time we go, we will be bringing our own rocks.

Playtopia was a great place for us to go. I plan to take the boys back 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?

Cerebral Palsy Day #2

Welcome To Cerebral Palsy 1050

A few years ago we did a Cerebral Palsy101 for those reading our blog. It explained in very basic terms what Cerebral Palsy is. This is a refresher course!

What is Cerebral Palsy?
Cerebral Palsy is a muscle and brain disorder. It affects things like his movement, and coordination and even sometimes the ability to do simple tasks, like write his name, run, jump etc are impaired.
What type of Cerebral Palsy does Tyler have?
Tyler has Spastic quadriplegia cerebral palsy. That means that it effects every limb of his body. Ty’s legs are super stiff and his arms don’t rotate correctly. He can’t touch his shoulders and he has a hard time writing. The legs stuff is pretty apparent.
Is there a cure?
There is no cure. The only way to cure it, is to stop brain damage before or right after birth. However, there are some things that can help make the rate lower. One of them is giving the babies their full 9 months. There are some other things that we will discuss later in the month. But NO there is no cure.

What is life like for Tyler?
Tyler has a great and full life. He isn’t really at a point where he is WELL aware that he is different but he knows that he is a little different. He loves to have pretend birthday parties. He loves to bowl, he LOVES to ride his bike and the park is on his list pretty much every day. He goes to school. He is in first grade. He loves his class. He is in a cross category class and does the typical curriculum and he does other stuff with a typical class. We LOVE his school and his school teacher.

What activities of daily living does Tyler do on his own?
None! That is right. Activities of daily living include showering/bathing, getting dressed, combing your hair and brushing your teeth. Ty can’t do any of those things without assistance. He also can’t feel that he has to use the restroom so he has accidents all the time. He still wears diapers or pull ups to help with that. Other wise, it is me. His mom! That gets the chance to serve him, every single day.


What can he not do ?
There are only a few things that we KNOW he will never do. He will never play sports unless adapted for special needs, He won’t ever be able to drive and you never know how well he will make it out of childhood, because he rides his bike in the street!

Basically we try to not limit him in what he can and can’t do. As long as he is polite and follows directions he can do whatever he wants~

If you have any questions, We would be happy to answer them for you! 

March is Cerebral Palsy Awareness Month

March is cerebral palsy awareness month. For us, we are very aware of cerebral palsy everyday. So now we get to share a little with YOU about Cerebral Palsy and the very thing that makes our life different... but happy.

Tyler has cerebral palsy and got the diagnosis around his 2nd birthday. I had asked since he was born if his pediatrician thought he had "IT." I really thought that it would make a difference, but it didn't. I thought having Cerebral palsy would change who he was, and it didn't. He was still a baby, he was a still a boy, he was still a miracle. Nothing would change ANY of those things.

When he didn't walk on his own, but was SO close and so active, we were sitting in the neurologist office. We were discussing Ty's need for a EEG and his sleeping issues. Dr. Bernes said " Well you know he has Cerebral Palsy, right...." The conversation continued, but I sat there stunned. No one had ever put that on paper or said it to my face.

From that day forward, it was official, Tyler had Cerebral palsy. And it didn't change anything.

Today, Tyler is Tyler. He is who he is. And he just happens to have Cerebral Palsy. He is very funny, smart, sassy and a spit fire. He is also very active. He loves to ride bikes, run, chase dogs, play with kids and throw rocks. He loves the park, McDonald's ( if it has a play place) and to play the ipad and watch movies. He also happens to have Cerebral Palsy. Which means he is also courageous, brave and stubborn.


There is no cure for cerebral palsy. There is no remission. There is nothing. Just treatment. And treatment doesn't cure the condition that is extremely painful and does a huge mean number on these poor kids body.

During the month of March I hope to share the message of HOPE, but of faith, courage and love. But most of all raise awareness to what it does to these kiddo's and how we can help those who are caregivers of these kiddo's. It takes a lot of work to parent the most courageous of heroes.

Stay tuned throughout the month to learn more and to hear about others and their fight to live with Cerebral Palsy.

So here is the FIRST fact:

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood.Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. 

2012 Year in Review!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We made it one more day......

Tyler has made it one year since the night of his seizure. It was the most horrifying thing to walk into and watch my poor sweet hero have a seizure. Having no control over his body. It was and still is something that makes my tummy hurt.

Since that day, we have graduated from Ty sleeping in our bed, to sleeping ON the floor in our bedroom, to sleeping with a video monitor, to me checking on him a million and ONE times, to me checking on him,  3-5 times a night. Someday, I will stop checking on him, but really, I probably won’t.

His seizure was such a hard thing for us in our world. We thought we were home free from anymore crap. It was the longest 20 minutes of our lives. It was the hardest thing we ever had to do, was to follow him to the hospital. To watch him be snowed. To watch him be sick.

There was so much home stress leading up to the seizure. There was parental stress leading the way the rest of the month. Our whole life changed that month.

Ty stayed home from school while we got some new behaviors under control. We were really just scared to have him out of our sight. We sent him back after break. We saw 2 neurologists to make sure we got on the right path.

 We lived in fear of the next one.

We still live in fear of the next one.

We saw his new neurologist and she said he was doing great. He was happy and hopping around all over the office. She said ONE MORE YEAR and we can look at an EEG and decide if we need to do meds.

We made it this year. We can do hard things.

Neurology

We are now adding another specialist to our already long list of FUN. Neurology fast track got us in today. We spent the entire afternoon in the nasty Clinic B of Primary Children's medical center today. We got there at 1:30 for our appointment at 2. They got us to the weight and check in pretty quickly. We waited about a total of 25 minutes to be seen. ( Sadly, that is REALLY good for a specialist!) The appointment went about 2 hours.

We were seen by the Nurse Practitioner and then the attending neurologist. We will see Dr. Lloyd for a follow up in a few months. The consensus is that Ty had a seizure because of the virus that he had BUT that doesn't mean he will or won't have another. He is considered at risk because of his brain damage. He is high risk when you add his shunt.

They are thinking his seizure is called a complex partial seizure. His eyes deviated to one side ( all by observation so not always the best or most accurate. Just what we can recall) They can affect the whole body as his was but they start in one part of the brain.

We talked about things we had seen before in his behavior. Some of the stuff we noticed was an increase in his anxiety. His teachers even noted that one. She said he had gotten much more angry and agitated at some behaviors the last few days at school. He had also started stuttering several weeks ago. Like VERY bad stuttering. It was making him angry and upset. It was frustrating to listen to.

His anxiety seems to go hand in hand with his sensory stuff. He has a one track mind. Like OCD. Once he gets and idea in his mind that is what he wants to do and he will talk about it till you do it.

She said that a lot of his behaviors are just sensory issues. She noted the sensory stuff he has with his mouth and head and asked if we would like to opt no thank you to the EEG. The reasons she gave was that it is only going to tell us that he MIGHT with a 70 percent chance MIGHT have another. Versus just medicate and have a 60 percent change MIGHT and then we can play with medication.

The NP was amazing with Tyler. He kept chasing after her to tell her stuff. He invited her to go to the big construction job with him. He asked her to play ball with him. Normal Tyler stuff. She said she didn't have the heart to put probes on his head for an EEG. She said she wanted to treat the patient. To listen to the mom. To listen to the kid. And that our kid was screaming don't touch my head. So we won't touch his head. And go the easy route.

We now have to carry a seizure kit with us. It is like a epi pen for your brain... and it goes in your bum. HMMM weird. It is suppose to stop any seizure that goes on for more than 5 minutes. In which you call the 911 team and administer these awesome meds. If he goes over 5 minutes and it stops with the meds we don't have to call the ambulance if we feel comfortable. Our hope is to NEVER see one again.

Overall I think it went great. We need to stay away from germs for a while. We need to keep him as healthy as we can for a bit to make sure they stay away. His poor brain and body compensate for so much that when he finally can't, he gets super sick.

I do have to say, the more people that meet his cute face the more that we realize just how amazing he is. We love him.

The Discovery Stage

The day of Ty's birthday I ran into a mom of a cute little guy that was in his class last year. C ( how we lovingly will refer to this cute boy!) has autism but is VERY functioning and VERY super friendly. Instead of transitional kindergarten he went to a charter school. I thought he was going to go to typical kindergarten. Anyway, I asked the mom how he was transitioning. Tears welled up in her eyes. She said he was struggling. That she was struggling. At that point I realized that we all need certain things.

The week of Tyler's birthday I always struggle. ALWAYS. While listening to a fire fighter from 9/11 he said " They say time heal all wounds. But it doesn't" and that is how I feel. While I didn't see the things they did, nor did I see the destruction that was seen, but I saw horrific things that don't go away when I close my eyes and that even 5 years later isn't healing. It is still raw. Only because the effects of what we saw and what came of the events are still coming up.

This week we had Ty's IEP and though his team is wonderful and really do have his best interest in mind, it stinks a big HUGE pile of manure. GINORMOUS pile of manure really. It is never a pleasant experience to see on paper where the world puts your kid. Generally, these manure meetings happen right around his birthday ( by law) and it really takes a toll on my spirit.

This year was his year to get his IQ and stuff put out there. THE WORST EXPERIENCE EVER. One paper says he sucks and then the testing for normal kindergarten stuff says he is average. While we rejoice on the average, the fact that he can't brush his teeth and has no self help skills makes him below average in the rest of the scoring.

The older he gets the more we find we will be doing for him for a lot longer than we had planned. The older he gets the further behind we seem in some area's. The older we get the more our life is different than the neighbors. The older he gets the more we realize he doesn't have friends like the others and we rely on family more than the average Joe.

But the older we get we realize he will never understand hate. He doesn't understand when people stiff him on his birthday. He doesn't understand when someone pushes him he is not suppose to be sorry. He doesn't understand when people stare at him that you are staring because he is "different."

He doesn't understand anything other than love.

Even when we listen to him being judged by "normal standards", we know deep down that he is smart, he is loved and he is and will always be innocent.

Dumbo's mom said " All of those people who scold you, what they'd give just for the right to hold you!" She was right..... she was VERY right.

Mousekabunga Dude

I follow a lot of craft blogs. They always have such fun and nice and pretty stuff. When we have a party, I would love to have all the fun decorations and perfection in one place. But my craft side is pretty lacking in superiority. But creativity and love is where it is at... RIGHT?

The new Jake and the Pirates show along with a few Mickey Mouse and our small obsession with the beach makes this craft a little on the fun side. Though what would really rock is getting to go to the beach, on a cruise and with Pirates and Mickey Mouse. ( What a "Wish")

With all the extra large boxes in and out of this house I got the MOST brilliant Idea in the entire world and decided to free hand draw a surf board and cut it out for Tyler The Professor. THEN I thought I would paint it all amazing and stuff. You know, pretty chevron lines, a name, a few pictures.

I showed Tyler the surfboard and he got SUPER excited, until I took it away to paint it. I used the last of my red spray paint ( which by the way I have not spray painted anything red to even have it here but whatever) and after it dried Tyler and I painted said Chevron stripes and Tyler's name and a few pictures that Tyler chose on his own. A piece of art work if EVER I saw one.

TOLD YOU that it was totally amazing and craftalicious :)

Then, of course, trying out the said Surfboard. That is the best part. Ty and I watched an episode of Jake and the Pirates. Ty taught me how to surf then we went and shared the endeavor with Daddy. We put the surf board on mommies bed and taught Daddy how to surf.

Step 1) Put your feet RIGHT like so. ( Ty tells himself this as he sets his board down)

Step 2) Bend your knees.

Step 3) Hold your arms out and Catch a wave. Mousekabunga!!

Catch a wave.... and MOUSEKABUNGA DUDE!

* photo disclaimer... IPHONE photos... and dirty bathroom. I hadn't gotten that far.. Judge if you want.. we were busy surfing :) *

Please stop taking my babies away

I was not awake for Tyler's birth. He was pushed into my room, a wonderful blessing was given and he was taken away. I didn't have my contacts and didn't have glasses so I couldn't see him. But my heart went right with him in the helicopter.

At 3 days old I had to leave him while they did surgery on his heart.

Weeks later they took him away from me again while they performed brain surgery.

EVERY night for 93 days I had to leave him behind. It was like he wasn't mine.

Until a month ago I had NEVER ever been away from him since I left him in the NICU. He was with my parents and I knew he was safe. He had a great time but I was so anxious to get back to him.

We have had countless surgeries where I have to hand over my child. Something about today did me in. Though there was no crying when they took him it was the emotions that I didn't expect.

Dallas had an interview so I took Ty knowing I was fine until he came out of surgery. The surgery is VERY minor but it seemed to take forever today. I even told the anesthesiologist that when he comes out of surgery he is very angry and violent and we think it is because of the versed. The doc opted that it would be "better" to have him not remember the leaving me and comfort him after. So reluctantly I agreed.

The wait was forever, we got a roommate and D finally got there. Soon after he got there they carried in a screaming kid. They didn't roll his bed in with him because he was not "safe" in his bed. He was thrashing around and wouldn't stay in his bed and was very violent. They handed him to me but that was short lived. He thrashes and kicks and I couldn't hold him any more.

My heart broke.

Dallas took him into his bed and tried to calm him down. The nurse came in and asked me if this was "behavioral?" I was so mad. No he isn't doing it for attention. I told you guys he would do this. It just made the situation worse in my heart.

It was heartbreaking to hear Tyler tell his dad to let me go as he thrashed around. It was heartbreaking to have him slump to the floor in tears and anger. It was horrible. Add that to my frustration of having no way to help my baby feel better and keep my other baby save a few tears were shed. But overall I just felt angry.

Dallas took Ty for a walk and out to the basketball court, which Ty was asking for. I went back to pack the bag and wait for discharge. It took forever. Seeing as we didn't need to stay every time I paged the nurse she sent in the not smart, not any good with kids CNA. I finally went to the charge and asked to be discharged.

D had to carry Ty to the car and we put a crying, sad little boy in the backseat. My heart literally broke knowing he was so so sad. We got home and we set up a picnic and got some chippies and he was fine. He was happy.

I left for my appointment with Grayson. Seeing as it is our last one I had a few questions about what is going to happen. Grayson is not going to be considered "term." But for us a 36 weeker is close enough. So close we don't think of him as a "preemie" especially when you consider him 7 times LARGER than our first kid. But we needed some information about what to expect.

There is still a chance that he will need to be in the NICU. He might have to be on CPAP and might have some issues getting his temp up. All things are VERY minor compared to before and we knew it was a possibility. At the end of my appointment I started crying. My poor doc must seriously think I am insane.

I sobbed telling him that I was so sick of people taking my babies away from me. That I feel like they are always just taken away so that I can't love without my heart being broken. I have had my OB for 12 years or so. He knows and has worked so hard to get us as close to term as possible. He sat there while I cried.

He left to get a prescription that he said he is making Dallas fill for me. It has to be filled before my section and it has to be done on Monday. He wrote me a script for a nice dinner for us at my favorite restaurant ( of course he should have included a check!) As he handed it to me he said I have prayed for 36 weeks that this baby will get to stay.

That is all I ask. At some point everyone around us that has had extra needs has had the chance to slow down on the hard stuff. Making the life routine so much better and less heart breaking. That isn't going to happen for Tyler. He is such a brave and amazing little boy, but the pain he feels will not ever get to subside. Instead he gets to be brave and I get to learn to let my heart break into a million pieces.

An ordinary miracle, that makes my heart shatter. But makes my heart melt every day.

Please... stop taking my babies away.

Graduation

Ty had is graduation program on Wednesday. After a horrific night the night before, ( like up 6 or seven times, out of bed, crying all night) I sent him off to school a little crabby. Ok. A LOT crabby. I knew I would be there in a few hours and usually he doesn't ask like a punk at school.

I had some errands to run ( which made me in a bad mood because I was already tired) and got there as they started singing. His class isn't very big but he didn't see me come in. Ms. Holly ( I think) waited for me since as soon as I got there they started giving out the diplomas. Ty was first. He told her " No thank you." I started to talk to Tyler and when he realized I was there, grabbed his papers and said " I go home now?" He was not a happy camper to realize they weren't done yet. But he chilled out when people starting clapping and he joined right in.

After 2 songs we watched a short video of the class and the aides started passing out treats to go outside. Ty was told it was ice cream and when he was offered one he had a great big meltdown. Why? Because it wasn't cones. So he cried and cried and asked if he could get a cone. ( and if he could drive the jeep) I only gave into one of his requests.

Sorry the first one is fuzzy. He was sticking his tongue out a lot but he kept moving so it is fuzzy.

I am so glad he finally is done with preschool and he can go on to bigger stuff. We are excited that he is going to just the right kindergarten for him. I don't mind him growing up. He is such a miracle to us that he makes every day amazing. ( Hard and long but amazing) He is in a 5 week extended school year ( but it isn't classroom at all) and we have a lot going on during the summer with LOTS of changes.

Ty is having a really rough go at life this week. It is testing both parents patience and Ty is not handling it very well. His dad is leaving for a week on Sunday and so it is just me. I am heading to my parents for the extra help and we really appreciate all they have done. I hope that we can transition out of the rough stuff soon.

Till then, T is no longer a preschool kid.

Now on to Kindergarten.