Learning to Be Brave ..... Again

After getting Tyler's casts off we went straight to get his braces. Brett asked us to bring in his loaner walker so that we could see if there was any sores on Tyler's feet. As he cautiously stood up                   (complaining as he went) there was a huge rush of relief that he was standing. But a huge disappointment but mostly sadness, came rushing through. I never expected that many emotions over such a small act.

It was such a small act. But it was an act of bravery. Bravery on the face of a non compliant, yet braver than anyone I know, face. And on the face of a 9 year old boy.

With each small thing, he truly does put on a brave face. But you know who else does. Every single person in this house.

 Grayson gets left out of SO many things and even when he acts out and is hard. He is still brave. Because having a brave brother and having a brother who has special needs and takes up a lot of time. It makes him have a brave face.

Dallas and I put on a brave face, because we see this boy going from walking to not walking. The feelings of him not being able to jump and run, the regression, the sadness and the roller coaster that we don't get a choice of riding or not riding.

So for now, we will start over and learn to be brave all over again.

Starting at ground zero.

Again.

The End Of Hydrocephalus Awareness Month

September is Hydrocephalus awareness month. I haven’t done much this year because it is not something that I like to think about. I hate worrying about Ty and his shunt and a malfunction and right now we are in a very VERY good place. I know that is not always going to be the case so for now we go on as though we have no worries in the world. BUT, I want to make sure that we don’t end the month with NO facts about hydrocephalus.

1 in every 1000 babies have hydrocephalus and is as common than Down syndrome and MORE common than Spina Bifida and Brain Tumors.

It is the MOST common reason for brain surgeries in children. 

There has been NO changes in treatment for over 50 years with no new treatment, or advancement  for a cure.

More research is needed to give better and more positive outcomes for those with this disease/condition.

There is no cure. 

There is no remission. 


Treatment is the same as it was 50 years ago. For every brain surgery your shunt has a 50 percent of failing within the FIRST YEAR of 50 percent.

If you were to buy a car and have it fail within the year the company would be out of business, but unfortunately, that is what these kids have to look forward to.

We will be participating in the hydrocpehalus walk in November here in Arizona and will be doing what we can do collect money for hydrocephalus.

We love our Brain baby. We wish him well with his shunt and are so happy to be in the place we are. We are still on edge when we start showing symptoms of malfunction, but we know we can do hard things.

We are proud of how well Tyler does when he is in shunt failure and how well he bounces back. We are proud of how well he handles the adversity that is put in front of him. He has so many things stacked against him and he always, ALWAYS, does his best.

A huge shout out of love to our favorite Neurosurgeon in the entire world. Dr. Walker. He has always been Ty’s biggest fan. And a HUGE shout out to Dr. Elton who decided to desert us here in the dessert and introduce us to Dr. Shafron who takes GREAT care of us and is a great help when needed.

Thank you, to those who support us financially when we do the walks and for those that support us when we go through brain surgeries. We are truly blessed to have Tyler be so great.

Education and research is needed to help those who are diagnosed with Hydrocephalus. And it takes a great person to be a brain surgeon!

Our Wish Makers

So this is not to be confused with our wish GRANTERS. Our Wish makers were the ones that were financially supporting our wish. In the make a wish world there is a lot of secret to who pays and funds wishes. Unless the “funder” wants to be known it is usually left anonymous. In fact, I have only heard of a handful that actually KNOW.

Up until we got BACK from our trip I had NO idea. I wish I had known so that we could properly thank them in private. But there is no way, other than just expressing how amazing our trip was. During the nursing, vomit portion of our day I got a call from Jenny at Make a wish  and asked if we would be willing to meet our wish makers.

I said YES!! Is there really any way to properly thank someone for sending your family to a once in a lifetime experience for your kiddo who has been through WAY to much in his short years. But that for ONE WEEK we forgot that it was hard. Because it was MAGICAL instead. So of course we wanted to know.

She gave me the address of where we needed to be and at what time the next day. Tuesday ( luckily no one was sick at the moment!) came and we went to meet them. We were SHOCKED to see that it was a school. And not just a small school but a ELEMENTARY.

Why is this so shocking you ask? Well this small school raised enough money for not 1 but 3 wishes to be granted this year. They have raised over 34k in the last 3 years for the make a wish foundation. They are a HUGE blessing to the kids who get to go on a trip.

Ty was able to stand up with me while we talked about our trip. But they already knew all about Tyler ( or as much as they could know from Make a wish) and his picture was in their school. So I got to tell them about how COOL Tyler is. And how he has had to go through some pretty mean stuff in order to be as cool as he is. And that even though he acts, talks and walks different he LOVES to be a pirate, loves Mickey Mouse and especially loves the beach.

We told them thank you for sending us on the trip. Thanked them for being so generous and also for taking the time to get to know us and that we would be watching their school and if we saw something we could help or donate to we would!!

Overall the process of our wish has been amazing. In all humility, I can’t thank everyone enough. Not just those in the make a wish process but all the way down to my extended family. After I gave birth to Tyler, I had 2 of my Aunts come to my room. Neither of them have realized the impact seeing them made. That same family usually gives service for a family in need and as we got closer we realized it was us they were helping. They are always there for us. The support that we get is amazing.

I am especially thankful for our loads of docs who we love. We love them so much and they are always a call away when I am in a panic but also in need. Thank you for always being there doc!

And a huge thank you to Tyler. Thank you for always being so brave!

Being the Hero

Tyler is my hero. He is such a strong kid that has gone through SO much. He is strong, loving, caring and has the most Charity as anyone I know. He is forgiving. He is all the things that make the world a great place.

I am lucky because I am the mom to this Hero. I get to see so many more things than anyone else. Nobody but his dad knows just how funny he is and how great he is. He is so much more active behind closed doors and he is saying so many more things.

Sunday I went to walmart to pick meds up and while walking in the store found 2 of the cutest and perfect pair of Pajama's. Mickey Mouse and Thomas the Train. Ty LOVES Mickey Mouse and he loves trains.

I brought them home and sure enough... I became some CUTE boy's hero!

He wanted the shorts on RIGHT THEN. So he sat on the potty and then got the shorts. He wore them to bed and when I tried to get them off ... NOPE!

We went to get his hair cut this afternoon and even when they were all itchy he still wanted them on. Lucky for us we had his Thomas pair tonight.

He is such a Great kid. I feel pretty lucky!

Preemie Brain "Washing"

This is NOT about Tyler and a really nice bath, but about a study that has been sitting on my Firefox explorer for several days. I seem to keep coming back to it and reading, and re-reading. I am not sure if that is because I think it is a good idea. Or maybe it is because it is one of the first "new" things that has come up for severe brain bleeds. (There was something about Epsom salt AKA magnesium sulfate. This is the first "treatment" after they have already happened.)

The treatment/study was done in Bristol England. When a premature baby was shown by repeated ultrasound scans to have had a large hemorrhage ( from what I can see in several reports, the bleeds were of grade 3 and 4 and resulted in hydrocephalus or at least swelling and pressure KNOWN as hydrocephalus) and then expanded ventricles, the baby was anaesthetised and two tubes were inserted into the ventricles in the brain. One tube was used to continuously drain out the cola-colored fluid while the other tube was used to let clear fluid flow in. The pressure in the brain was measured continuously and more fluid was drained out than flowed in so the brain slowly decompressed. When the fluid draining out cleared, the two tubes were removed. This took on average three days.

From 2003 to 2006, 77 premature babies with large brain hemorrhages in Bristol, Glasgow, Katowice (Poland) and Bergen (Norway) were recruited. Thirty-nine babies had the ventricles washed out using the Drainage, Irrigation and Fibrinolytic Therapy (DRIFT) and 38 had standard treatment.

When they were two years old, independent assessors examined all the survivors. Of 39 infants assigned to being washed out, 21 (54 per cent) died or were severely disabled versus 27 of 38 (71 per cent) in the standard group. Amongst the survivors, 11 of 35 (31 per cent) in the DRIFT group had severe cognitive disability versus 19 of 32 (59 percent) in the standard group. Median Mental Development Index was 68 (out of 100) in the washout group, and below 50 with standard care. These results are statistically and clinically significant. ( Study Found HERE!)

So these are my thoughts. I hope that they do find something that will help their little brains. They are so fragile. They have so much against them when they are fighting for the right to get big that having brain damage makes things twice as hard to overcome the stuff that comes down the road.

There is no "cure" for brain damage. There is no cure for the seizure that come from their broken wires in their brain. If there was something that they could do to help why not try?

The study didn't show any major downfalls. It didn't seem to be detrimental to them in any way. I would opt to have had it tried on my child. I think clinical trials such as the above could only HELP.

What are you thoughts? Is the study something they should bring the the United States?

He is my Brave Hero

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

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

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

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

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


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

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

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

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


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

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

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

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

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

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

I will and would take his place in a heartbeat.

T you are MY bravest of Heroes

My Hero

Dear Hero,

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

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

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

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

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

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

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

The Littlest Heroes Project

A year ago Tyler was accepted into a project called The Littlest Heroes Project. It gives a free photo shoot to children with disabilities and illnesses. When Tyler was in the NICU Angie did some pictures of Tyler and they have since become my favorite.


I recently submitted a application using my Photo blogspot. The application was accepted. I am now a photographer for the project. I am an "amateur" with a large passion and skill. So, if you know someone that will benefit from the photo shoot, or a photographer willing to donate their time please give them the website.