Hydrocephalus Facts

• Approximately 1 Million people have Hydrocephalus in the US. 

• There are believed to be 180 different causes.

• There is no CURE and very LITTLE research. The NIH spends 60 Cents per person with hydrocephalus per year compared to $300 per person per year with Juvenile Diabetes. 

• It costs the United States 1 billion per year in health care costs to treat Hydrocephalus. 

Please Sponsor Team Tyler for the walk in Phoenix this October. Help us raise awareness for the millions that have this condition. 

Please join Team Tyler HERE and any amount of money you can or would like to donate, please do. In honor of these warriors, please help them fight longer!

September is Hydrocephalus Awareness Month

Hydrocephalus is a condition of the brain that is derived from the greek word "water." Most people know it as "Water on the brain" or fluid on the brain. The "water" is actually Cerebral spinal fluid (CSF)  and it has accumulated in the brain because of a malfunction or defect not allowing it to leave the brain.

There are several forms of Hydrocephalus. The first form is congenital. Meaning that when you go in for that "BIG" ultrasound and they are looking and measuring the head, they are looking for abnormalities in the brain and head size to see if your baby has Hydrocephalus. It is a preterm diagnosis for most if the condition is congenital.

There is also acquired hydrocephalus in which the was some kind of trauma or damage done so that the CSF couldn't leave the brain causing a back up of fluid. This back up of fluid or obstruction, causes the head to swell and can cause blindness and brain damage if not relieved from the patient.

There is also a Normal pressure hydrocephalus that can be a cause of dementia and a few other forms. But the 2 above are most common.

Prematurity and brain bleeds are a huge factor for children to have acquired Hydrocephalus. Tyler was one of those statistics.

They University of Utah 2003 data suggested that 1-2 children in 1000 are born with Hydrocephalus and account for 0.5% of all PICU and neurosurgery unit admissions. It is a rare condition, but  a serious one none the less.

The only way to treat hydrocephalus is with a Shunt. Or a catheter in the brain with silicon tubing that runs under the skin and carries the fluid out of the brain and into the heart or abdomen. The shunt was invented in 1960. Very few major advances have been made to the treatment of hydrocephalus. The course of action is the same as it was SO long ago.

The failure rate of a shunt is 80% in the first year and can malfunction at any given time.

Hydrocephalus is grossly underfunded and research is almost non existent.


Tyler was diagnosed with Hydrocephalus in the NICU in October of 2005. We were transferred to PCMC where Tyler underwent his first brain surgery. He had a reservoir placed where his doctors could take fluid off his brain when it accumulated until he grew out of the condition or he needed a shunt. As time went on, he did have long spaces where we were not pulling off any fluid.

Tyler left the NICU unshunted. In February 2006 he underwent another brain surgery for a condition called Sagittal Craniosynostosis.  About 30 days after that procedure Tyler got very sick. We went by Ambulance up to PCMC where his heart rate was going lower and lower. Finally they did a CT scan and he went in for emergency brain surgery to have a shunt placed.

30 days after the initial placement of his shunt, and after a month of him crying non stop, we figured out that his shunt was over draining. We were immediately taken in and a revision was done on his shunt.

In 2008 Tyler got sick and was sick for about a week until we figured out that the sickness was not the stomach flu and we needed to go back in for another revision. 6 months later, his shunt and broken again and we were back in the operating room.

We have been stable, but every throw up sends me into a major panic attack. I don't know if it means brain surgery, or just a night of vomit. We have since developed seizures and have grown much bigger. But so far the shunt is still working. In the last year we have had a few ultrasounds, MRI's and CT scans where we see all the extra tubing in his belly. We also see the extra shunt in his head that they couldn't get out.

Tyler has slit ventricle syndrome and he is a very peculiar case. His Doctor, Dr. Marion " Jack" Walker, is one of the best neurosurgeons in his field in the slit ventricle department. We feel lucky to have him.

We would love to find a cure. We would love better treatment options. We need more awareness!

 We will be walking this year at the Phoenix walk in October. Please click HERE to donate in Tyler's name!

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!

Medically Fragile

Ty is considered Medically Fragile. He is one of those kids who RUSH through the ER. We just say He has a shunt and if his symptoms match that of a shunt malfunction we are pushed right from triage to a room.

A lot of conditions do that. Kids with Trach's, Transplant kiddos, and Shunt kiddos. Frequent "flyer's" in the ER are high on the priority list if we go to PCMC or any other children's hospitals.

Sometimes I feel bad when we are sitting there and we are called FAST and another mom you KNOW has been sitting for a long time just watch as we go right back.

In Arizona, what is now Cardon Children's use to be Banner Desert, we would go ( only when we had signs and symptoms) and usually wait less than ten minutes in the waiting room. A few ladies with kids get really mad. But it is his brain we are talking about and the longer he is malfunctioning the worse it makes his outcome.

As the malfunction gets worse the slower his heart rate gets. The sicker he gets and the sicker I get.

I often wonder why we don't have better manuals as moms to take care of these things. Or to show us that something is REALLY wrong MUCH faster.

Tonight I am sitting with my sweet baby next to me. He has fallen, broken his nose, been face planted and seen an ENT, PT, SPT and his pediatrician this week. He has played at the park almost every day, went to school and now tonight, he is not feeling well. He has a tummy ache of sorts. But is it just a tummy ache? What if it is his brain? What if it is just a bug? Why can't there be any indicator, a flashing light if you will, Telling me what else is broken.

So tonight, I sit with my Cute little bug, who isn't feeling well. Lying in my bed. Where I feel MOST safe.... Waiting and wondering.... And praying.

Praying for a bug

Happy Shunt-aversary!

February 13Th Marks the official one year mark of the last Shunt malfunction and revision. It isn't the last but making it a year is HUGE... HUGE!

Shunts scare me. They are something I never thought I could deal with. they were not something I thought I could handle. But we have done it. I still freak out when we get throwing up. I freak when something is off but I no longer long for a CT scan in my basement that I can stick him in. I trust that my instinct, Dallas and IMPRESSIVE vomiting and a pediatrician that loves him will get us where we need to go.

Here is our September 2008 revision :

Because he was so sick he had to have it done quickly and so his hair was not fully shaved. We asked on he next revision to shave it al off.. PLEASE!

This is him the next day at home.. Safe and sound. Just where I like him.

Shunts scare me because I have to watch my baby die. Literally. The brain shuts down his heart rates, we can't keep him awake and he is vomiting in hopes that his head will lose pressure by throwing up. He can't focus, sit up or do anything. The longer we wait to take him in the lower his heart rate and the more emergency we become.

I am so thankful for my baby tonight. I look at him and wonder how I made such a beautiful little person. How lucky I am that I am his mom. And that he is an ordinary miracle.

February: The anniversary month

This February starts a Wonderfully busy month of anniversaries for us! In fact if we can get through it we will be looking at much better odds.

Our average for Valentines spent together as a couple is 1 in 4.. we are hoping to make that 2-5. What do you think our odds are of getting to spend that day OUTSIDE a hospital?

What has kept up in the hospital for this day:

Feb14, 2006 Tyler was scheduled for his first craniosynostosis surgery. It meant a week in the ICU and a day or 2 in the infant unit. Cranisosynostosis is the premature fusion of his sutures in his head. We were told at that time it was less than one percent chance we would be doing this again.

Feb 14th 2007: Tyler was the one percent and we had to do a total skull reconstruction in the mean time Dallas was trying to get us ready to move to a new state.

Feb.14th 2008 We got to spend together because his seizure monitoring went faster than normal and they were able to get him home faster. So it was the FIRST time we spend valentines TOGETHER.

Feb14th 2009 was met with a child in the ICU at banner desert from emergency brain surgery. So all plans we had were canceled to prepare for him to come home. Home coming from brain surgery includes all carpets cleaned from top to bottom. All surfaces bleach and floors scrubbed till you can eat on them .

So what predictions can you make for Feb.14Th this year?

The day after......

A 24 hour flu bug infested our house. We are SO glad it came and has now exited( hopefully) Yep, people get sick. Yep, its most likely the flu for "those" people but for us we are on the edge of our seats. When do we freak out totally and run him to the ER for CT scans, fluids and possible surgery, OR do we sit and wait and wait and wait and then wake up all fine. Or wake up all NOT fine and the above surgery comes into play.

I realize to some that the stomach bug wouldn't cause this much anxiety. It is just some vomit. But I can honestly say after the 2 shunt revision we last experienced, those little vomits in a shunt baby is what the docs call " impressive and better then projectile vomit" it is so impressive It literally will span my entire bed. Mostly because the force they are puking from is from so much head pressure a person could NEVER understand ( even myself) They are literally trying to relieve the pressure they feel in their brains.

After a vomiting episode Ty will lethargically lay there for a while. Literally, lay there. This is where my next *key* point comes into play for checking shunt function. While he is laying how bad are his eyes moving? How fast? Can he focus on ONE object? Can his eyes hold still long enough to not be worrisome. Tyler has a condition called nystagmus. His eyes always move. Constantly moving. Jerking even. The link has a eye that is like Tylers. His moves a lot fast but the idea is the same. Tyler does have periods where his eyes are VERY still. But a shunt malfunction is not one of them. AND a really bad sickness makes his eyes very bad. But I have seen his eyes both ways and I can tell a difference between head pressure and flu pressure. His eyes were not bad yesterday.

We got him to sleep pretty early for him and he did really well till about midnight when he was restless. I thought more puking would instill but it didn't. At around 3 am he woke up and said he was all done ( signing this at 3 am) and he wanted food and a drink. I got him his drink, and offered crackers. And a laptop did wonders for movies. HOORAY!

He was up from 3-5 snacking on crackers, drinking and watching movies to which I finally switched OFF the computer and put him back to sleep. Which we did sleep. Till around 9:45. It was the longest I have seen him sleep in a WHILE. It was not totally rest full to me because he has to sleep touching me and I really needed to roll over :)

Today we pretty much had our kid back. He was jumping on trampolines, throwing numbers and letters, watching Barney and being bored. And no throwing up.

So YES we are thinking bug.

Yes we can over react but I think it is understandable. We have learned to go through our "chain" of commands.

Ty is sick what do WE do:

Call Dr. Marisa, see what they suggest. After asking and answering a few questions from them they will tell me what they "think." Yesterdays was Nancy, if you think that he is broken you will know in a few hours ( its to early to tell either way) take him to PCMC. Call me. We will get things goings if needed. Thanks for not freaking out!( though I think we freak her out sometimes)

Lay there with him. Hug him and love on him. If it is a sickness dang that stinks. If it is a shunt he needs to know that we LOVE him soo much and that we will fix it and as he gets sicker and more pressing to get to the ER, we need to be close to monitor for seizures and those pesky heart rate drops.

And last but not least:

Get a blessing. At the end of the day that was what put him to sleep. A simple and powerful blessing from his dad. Ty had his eyes closed the whole time and opened them simply to say amen.

We love him and hope to make it to Feb. where we reach our one year with a shunt. We can do it. But above all we move on and keep going. Monday we go back to our routine.. a little skinnier and a little more weak but full force forward.

Pray for it to be a bug

I have realized the oddity of the tittle. But I am begging for the vomit, lethargy and extreme irritability to be a bug. Yes A BUG... My other option is it is a shunt... pray for a bug...

In knots

I am the worst nervous mommy when it comes to sickness. I drive Dallas insane but I can't help but feel total panic.

On Saturday Ty did the early 3 am wake up. I couldn't shake the idea that he was not feeling well but he acted fine and asked for food around 5. I went downstairs and got him food and Dallas came down to take over and sent me back to bed. I was so thankful. I had a photo session in Salt Lake so I wanted to feel rested and I had to work at 6:30 pm so rest was really appreciated. I wasn't feeling well. Nauseous. I chalked it up to nerves but it felt like morning sickness. I am not pregnant so I KNOW it was something else.

I headed to the photo session ( now feeling bad cause I am almost sure it is a bug) ate some crackers and was feeling tired but OK. I got home, Nicky was watching Ty and he had fallen asleep. She said he was acting fine. Ate a ton of toaster struddles and fell fast asleep.

He was not interested in lunch but I offered to take him to the park. At the park a small little fall threw him into tears. So we came home where he laid on the floor crying and whining. I felt so bad for him. And then I noticed the fever.

My dad and mom stopped by and Dallas and my dad gave him a blessing. I noticed some gagging and knew that we were gonna have throw up. Through out the evening I started throwing up to but wasn't sure if it was from nerves or from a bug. Ty had a pretty rough night. He had a fever through out the night. Acted much better off and on through out the day. However tonight we are back sick. He took some motrin with LOTS of coaxing and holding and some night meds which we hope will make him and mom feel better. I am not far behind!

So why the nervous mom-

We have a shunt. One that tends to break. One that has broken every six months. Shunts and stomach bugs have the same symptoms. How do you know what is what?

As Dallas and I have been frantically googling trying to ease our mind and we find OUR own blogs but nothing else that will put our mind at ease. NOTHING. I call the on call at our peds and she doesn't think it warrants a trip to PCMC right now. He only threw up once today and it was not " impressive" vomiting. Like massive HUGE amounts that are violent VIOLENT. So we wait.

The fact that I still worry about losing my child 4 years after the initial events of his rough start makes me mad. I hate how I still have thoughts of watching him get sicker and sicker. Feeling helpless as I watch him die. He is alive yet I still think of those times.

When he is sick both of us have anxiety. Both of us watch him closely. I hate how it all plays out. Every cry and whimper at night has me on edge, every time I can't hear him breathe I freak out. I have to know he is OK.

I can't bear to think of the alternative. No matter what I feel regarding any given situation he has changed my world. As sucky as the weeks are or the therapy after therapy he is mine. And thinking a shunt breaking puts him at risk makes me so sick.

I am in Knots and along with me not feeling well either, knots are not fun!

I know he will be fine whatever we need to do. But I still can't help but worry.

ER trips, Mothers day and accidents OH MY!

As you can see from the previous quick posts we have had quite a weekend. Its hard to believe it is only Tuesday. So grab a box of Tissues.. oh wait that is me. Grab a soda and some top ramen and get ready to laugh cry and feel sorry for me.

Last Thursday I had the (un)fortunate opportunity to make a quick visit to the dentist. I chose the dentist I did because he was just up the street. Well due to overhead costs and less patients coming in he went out of business. NOT KIDDING! But he tried super hard to find an office to work in. So I drove. Not far but I still had to think a head of time. Got a root canal done. They didn't offer nice gas like Dr. Mckell offered but I survived and got it done. BUT the bite is off. Can't tell till the numbness comes off so I have been dealing with a owie tooth. I had an appointment today to fix the bite but, well more on today as we go.

On Wednesday we noticed that Ty was acting of. Meaning he was mean and ornery and throwing way more tantrums and what not. Dallas put him in bed and he slept for 3 hours. We had to wake him up. We didn't think anything about it.

I purchased Dallas some tickets to go to see the Star Trek movie for Thursday. I had the dentist appointment, got Dallas off to see the movie and still had an incredibly crabby little dude. He didn't even want a bath. I got him off to bed and finished cleaning up the house. Around Midnight on Thursday is when Ty woke up not feeling well. He had a small fever and didn't want to sleep alone so he came in with me. He was not a happy camper. He was way off and I was a nervous wreck .

To those stumbling across my blog when I mean off I mean like shunt malfunction off. Because of our most recent "bout" of malfunctions I am way way over the top crazy about something being wrong. I know this. I know I can't help it. Some of the signs and symptoms of shunt malfunction include:

Lethargic- check
Irritability- Check
Headache- can't really tell ya since he doesn't talk
doesn't want or can't be consoled- check, he didn't want me to hold him
Full fontanelle- we don't have any

Ok, so now I am on high alert. I voice my concern to Dallas who agrees something is wrong but we both agree lets not jump on the shunt bandwagon to fast. I call the neurosurgeon and take Tyler in for a nap with Dallas. I shower, and decide to lay down and take a nap as well. Around 1 Ty stars whining. We had just gotten off the phone with the neurosurgeon office and they said if he starts vomiting come to the ER.

There is the last sign Vomiting. I go crazy. I know that it is his shunt and I am freaking out. I call the office again and have them be ready for us.

The post here shows my frustration of the ER. So I won't make you read it again. I feel bad that it took us so long but man... it really stunk. After they finally gave him fluids they let him drink some sprite soda. He downed 2 of them and a cup of ice. Discharge instructions said to come back if he puked. He puked on the way home. NO WAY was I about to take him back. If his head wasn't broken let the kid puke at home.

Saturday was a day full of Ty not feeling well and him feeling BETTER. It was nice to see him come back to be ok. It was hard to get him to eat anything. Because he had thrown up on the way home all over me we dumped him in the shower at midnight, got him out, half dried him and threw him in my bed. I always felt better sleeping in my moms bed when I was sick so there he stayed. He was in an out of sleep but we were all able to get a little bit of sleep. Here is the little bed I made him on the floor. He thought it was cool, but little did he know that it was in case he puked. And so Cute was he. I fell asleep and woke up to him looking like this.

He was up bright and early Sunday and Dallas was nice enough to allow Ty to hang with him. I got Ty some breakfast and some juice and turned on a movie. I was able to sleep in and Dallas and Tyler gave me a really nice certificate for a massage.

Monday we seemed to be back together. He was feeling better, I was feeling better. I felt rested. Well Dallas hated Monday. He would much rather be home with us working from home than in the office. But I got the house cleaned and all of our laundry done and folded and put away. So excited that Dallas is going to be working from home on Tuesday. I even made rice krispie treats.

Tuesday..... BOO on me. Ty and I were running late. We called therapy and let them know. We got there and our sweet music girl no longer is working there so we were transitioning to another one, so the few moments I have to browse Target, or the grocery store or the sitting at jack in the crack was null. I needed to be there for transition. Ty did fabulous. Therapy was great.

On the way home I thought it would be a nice gesture to get us all burgers. Yes Healthy I know. But it was something I could do and we all would enjoy it. So we headed to the exit that gets us right there. I go through the light and wait for 4 cars to pass so I can make a left handed turn. I check both ways and ahead to make sure we can make it and I go. Almost there I get hit by a car. On the passenger side where my sweet baby is at. Luckily it was on the wheel and not his door. I freaked. I asked him if he was OK. He looked at me and smiled and went back to reading his book. Looking around to see what was going on.

I then got out and didn't see any stirring in the other car. She was on her cell phone. Finding that odd, I truly think she was on her cell phone the whole time cause she never got out of her car. Anyway, I notice leaking fluid from the Jeep, I run back grab Tyler, grab my cell phone, call 911 and another witness has all ready called. Not the lady on her cell phone mind you. The guy was Mexican and wouldn't wait around to make a statement. I called Dallas and the police got there. They sent us in to burger king because it is 98 degrees outside and Ty is little and they wanted to keep him cool. So I missed all the running about. But what little bit I did get the lady was freaking out because she didn't have her license, etc. Well that is the least of your worries sweetie.

Anyway, Dallas gets there, shoots a few pictures. ( I had the wrong setting set up for him because I was not expecting him to take any photos without me being there to change it but I was so glad he grabbed it) and then we were done.

I got a ticket for failure to yield which was a given when I was making a left turn. I am hoping that lady got a speeding ticket and distracted driving but I don't know. The speed limit was 35 and the freaking tire came off the rim. and her momentum kept her going almost hitting a pole.. So 35 miles.. my foot. Either way I didn't see her. And we hit.

So, Wednesday.. What can you possibly bring? ENT appointment at ten and trying ti fit in going to the dentist so that I am not in pain all the time. Dallas with no car and me feeling sad just makes for a long week.

BUT there is some pretty little flowers in my yard finally. I hate the landscaping but it made me smile.


Oh and at the end of the day. Tyler, me and Dallas are fine. We are all well and in the same house. I feel safer here. I feel safer with my baby by me. I feel safer with Dallas around. I love them so much.

Bad Day- Good Day?

Bad days happen. I am not worried. Sometimes it takes a little bit before some things sink in. I am not worried about the hearing test nor the thought that he "might" having hearing loss. For one thing, if he did he has had it for 3 years. Second, then we can fix it. Third, I really don't feel like he has any loss. I think he has just had so many people poking at that sweet little head he doesn't want them to touch his ears, let alone poke things in them. He does pass the vision/hearing exam.

I think it just feels like the icing on the really yucky cake sometimes. Most of the time the cake is pretty good. In fact most of the time it is fabulous. But every now and again the cake has a bitter nasty place. Take a bite but then stop cause it tastes yucky. Soon it will be back to YUMMY.

Along with bad days come just the crappy stuff that puts you over the edge. You know, the stuff that when you bite the bitter and the icing is there and makes you cry. A lot of that happened today to. The eye specialist we see for Ty is very hard to get into. After his last shunt surgery I called to get in because we have to have baselines after major brain changes. Well they couldn't get us in any sooner than the appointment we have had set up for six month so I waited patiently. No biggie.

I called last week to double check the appointment and they called yesterday to confirm we were coming. Told them yes. Today we get a call letting me know that they needed to have it CANCELED. I was like OK why? Thinking if the doctor was sick no biggie. Well apparently in the 3 calls and six month wait the referral expired YESTERDAY. If I didn't get a referral in to them by the appointment I would not be seen. Um we had a pediatrician appointment on TUESDAY. A little notice that I would need another referral would be fabulous. it wouldn't have been a big deal at all TUESDAY.

An appointment that I have on Tuesday of next week also needs a referral (which isn't a problem since my doc was sending me there) and the specialist that we are seeing needs some of my past medical records. I call to verify that the insurance referral was sent and that everything was done. She calls back (after telling me it was all set) telling me that I need to come in and sign a release for my medical records. I was thinking " If you are referring me and I am walking out of YOUR office don't you think you would have me sign YOUR release form?"

No big deal right. Well I had respite today and she didn't come. Didn't tell me she was not coming so I waited all afternoon to run errands. These errands included buying diapers. Kinda a needed thing in a house of a none potty trained 3 year old. Oh and the laundry soap to stop his rash.. yeah needed that to. Dallas was nice enough to deal with the said amazing 3 year old so I could run over, sign the papers and get the needed items.

So now I sit in a quiet house, editing some pictures and loving how sweet Tyler is and how amazing Dallas is. They are so what I need at the end of the day. I couldn't ask for anything better........

Except...... I entered a contest a few weeks ago during Cerebral Palsy awareness week and won. The goods came in the mail. Took Pictures for you all to see.


AND I totally scored the coolest shoes at Walmart last night. I decided that EVERYONE is getting a pair for their birthday this year.



And how could the day really be THAT bad when you walk in from your errands and see THIS!!!

The ultimate blog party 2009

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

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

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

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

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

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

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

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

All Because Miracles Happen






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

Our Roller coaster

The roller coaster seems to be on Coast right now. I prefer it on coast. I don't prefer the climb and I definitely don't like the violent slam to the bottom.

So the week has gone pretty OK. Here is the run down.

1. Saturday ( we were released) and we came home. Mom ( that would be ME!!) was super sick by this point. I had gotten a lot of sleep on Friday but no sleep on Saturday and I was not feeling well. Ty was pretty down that day and was laying more than the last surgery. No fever and no oozing at the sight of entries.
   
2. By Sunday we had a sniffling pile of mommy and Ty boogie rags all over. Ty has the runs, a small fever and can't hardly stand up. Poor kid. Mommy.. sick. Coughing a lot. Not feeling well. Daddy, Still OK.
   
3. Monday Dallas had off and mom got a few extra minutes of sleep in. Ty started to noticeably get sicker and mom is sicker. Ty was taken to the Peds to get a baseline ( again) the ONLY time we have gone in six months might I add. He feels Ty would be best on an antibiotic. Sends us home.
4. Tuesday we attempt therapy. Ty is done a good ten minutes into his second therapy. Off we go with green boogies and red eyes. And no way is he taking that antibiotic.
   
5. Wednesday more of the same only this time mommy isn't sure she is alive. Exhaustion is getting to be a common factor here .
6. Thursday... Daddy decides that he is NOT feeling well. Comes home with a sore throat. All three of us, in one week with the crud.
   
   
   
   
7. Friday much of the same. Mommy feeling much better. Ty still not touching the antibiotics and daddy just feeling gross.
   
8. Saturday rocked. Only because Dallas, for the second day in a row, got up and headed Ty out the door before I heard him and got to sleep in. No sound till 9 in the morning. Amazing. It also made for mom to start feeling better and get to take care of 2 sick boys.
   

Ty seems to have gotten sicker this time because he was on the vent. It seems to have made his lungs much more yucky. They sound wet and crackly. He is coughing well and has more boogies than I have ever seen him have. I was horrified for RSV for this very reason. Though we were not diagnosed with RSV, the fact that he was on a vent last week is a good contributing factor to his really bad lungs.

His little owies seem to be healing. The one on his tummy is a little sore and he doesn't like anyone to touch it. It looks red but not infected red. We will see how he does as he goes to school tomorrow.

This surgery has brought out a new Mean streak in Ty. He is VERY opinionated. He is so opinionated it is frustrating for him and mom. HE MUST have someone right there with him and usually it is mom. Though Dad does an awesome job of doing super fast so he is a preferred choice of toy.

His muscles have been more tight. Something that really bothers me so I won't be touching on it to much. I will be calling the Orthotist..aka Bret on Monday to see when we can be braced before doing Botox in a month or so.

Dallas and I are on the mend. WE seem to really be OK. I am feeling much much better and Dallas will have a few more days of the crud before he is OK. He is still working so hard for us and we have pulled together for each other.

Dallas also got a New grill. His broke and we have been saving to get one. We went in with our budget and started to look around. We found a discontinued one for 300 off the regular price. WE talked it over since it was a little above our budget and decided that it was worth it.

As for me.. I am the mom. Its what I LOVE to do. I love it. I have kept a clean house through all of this ( serious I have) it isn't perfect all day but at the end of the day it is all put away. I have no loads of laundry right now and I am happy.

Here is to a less stress full week, more appointments and more routine for Tyler . Wish us luck!

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.

Is it really only Tuesday?

This weekend was so nice. Me and Dallas went on a date on Friday and had such a good time. I thought " wow, what a great way to start the weekend and the week!" Dallas got his Christmas present on Friday night and we were looking for a cord. We walked around San Tan Mall and did a little window shopping/ clothes shopping. We had Dinner at a nice little brewery/ sports bar place. Ty was so good and loved all the Christmas lights. We got a Christmas tree and the house was clean. At the end of Saturday I really was looking forward to the week.

Sunday I worked and I got home in time to put my sweet baby to sleep. I got his meds and he really fought me. That is so not normal for him. I got him to take a little bit and went in and held him for a bit and cuddle cause I didn't see him for a while. Put him in bed and about 2 hours later he was crying.

Since we put him in a toddler bed and he can get out him crying is a weird occurrence. Usually he just gets out of bed and comes in with us. But that night he cried. I went in their picked him up and he threw up. All over me. I noticed he had a fever but wasn't sure what it was.

We gave him a bath and put him back to bed. An hour or so later he screamed again. He had thrown up in bed and was all dirty. I undressed him and put him in with me and we had a pretty rough night of it. He was up every 30 minutes crying and although we had no more puking it was pretty exhausting. We had the screen saver/ tv on so that it acted as a night light and around 4 he decided he was all done sleeping and he wanted a movie. I put one in because of total desperation for some sleep. Finally at six I asked Dallas to take over for me and I got a few hours of sleep. I was so tired all day.

He was pretty good most of the day and we had no more puking episodes but he was really whiny. Because he didn't feel good I made him take a nap and he woke up CRABBY and whiny. I have no idea what his deal was.

We got in the shower and he perked up. But he was a perfect kid for his dad so I hope it is on the upswing and we are good for tomorrow.

I worked and am not feeling the top of the line either. Like I am getting a bladder infection or something and I am super dehydrated. I am tired to.

Tomorrow ( Tuesday) Tyler has his hearing test at the special ENT that does just hearing and no tonsils and stuff.

Wednesday I have to remember to call for Jury duty and Thursday is Thanksgiving. Friday is black Friday and there is ONE item on our secret blitz I want but am waiting to see if it is worth it to get up early and then spend all day at Jury duty. Not sure if I can stay awake all day!

So that is our week... in a Nutshell.

Please pray for Tyler that he feels better and it is just a bug and nothing more. It scares me to death that he doesn't come with a flashing sign when it is something bigger. I never know when to over react or stay cool... I hate shunts!

Starting the new normal

For any family who has a chronically ill child or a child with special needs it takes a lot out of you to enter the hospital and then leave and pick up where you left off. ( I am sure it is the same for the "typical" parent it just doesn't happen as often. As your child gets sick you slip into COPE mood and wait for the cope mode to subside and you find your grove in to what is "normal."

Hind sight for this malfunction was definitely 20/20. Shunt malfunctions have the same "symptoms" as typical toddler behavior, but we have definitely been able to see where that typical behavior was not so "typical" and ended us were it did.

Shunt failure symptoms include:

1. Change in appetite.
   
2. irritability
3. fussiness
4. sleep problems
5. vomiting
6. More clumsy
   
7. headache

All of the symptoms are things that a typical kid could go through at any given time. We thought his appetite change was that he had stopped going through a growth spurt. He was not to irritable but was definitely not as "happy " all the time. He has always had sleep problems and the clumsy part. Well he definitely isn't' NOT clumsy.

Looking back there is so much that I noticed but by itself there is no indication for issues. Together ... Alarm.

So now that we have Tyler back and he is new AND improved and keeps going longer and longer we start the new normal. Me and Dallas are slipping out of cope mode and into extremely tired and stressed parents. Tyler, in the mean time, just wants to play and play and play.

The next week is nothing but appointments after appointments to find this cute kid's new baseline.

I feel so lucky that we get to have him back. I hate thinking of how close I was to losing my sweet little man. He is very much a miracle.

All under one roof!!!

We are all under one roof tonight. It feels so good to sit know that Tyler is sound asleep in the room next door and his dad and I are right here for him when he wakes up!

What a whirl wind of a crazy week. In my wildest dreams,( OK it was my worst nightmare) did I think I could ever get through this with out all the family we usually have around us. BUT! We did. We relied on each other and we are home!

So this is the REST of the story and a little about how shunts work.

So where we left off:

Ty had emergency surgery last night ( which we "told" you about.) and he came out as feisty as they get. We got him settled and we headed home. I blogged and headed to bed. I didn't sleep long just enough to get my energy back and I was up around 5 am. I finished up some laundry( see above photo of the towels. 10 towels in one day.) and did up some dishes and then started the errand running that has to get done.

After waking up Dallas and finding him not feeling the best and ready to puke all over, I headed up to see Tyler. We had called every hour to see how he was and the only report we could get was he was sound asleep. Which gave us much needed reassurance that he was doing well.

I got to the hospital just after he was returned from his CT scan. I had wanted to get there a little earlier but had to take care of my other guy to. But when I got there I saw the most WONDERFUL sight. Ty was sitting up and ready to go! He looked amazing. When I got there and said his name he jumped right up ready to get out of the crib. At that point he was all mine!

We set up the computer and put on a few movies, stacked a few blocks, threw a few balls. We called Dallas a few times. He was doing really well. They brought his lunch and I KNEW he wouldn't eat it so we took a trip to the cafeteria where we had PIZZA.

(I was a little disturbed at how many people stared at us. In fact it kinda hurt a little but his poor little scar is kinda out there. I love him so much and just want to have people see him and not the scar.) ( this is the scar)

We went back and threw rocks outside. Played in the water fountain, threw rocks in the water fountain ( not sure if we were suppose to but he loved it) then went to find a play room. It SUCKED and didn't have any balls so we went back.

We ran into our neurosurgeon on the way and said if we had been out and about then we might as well get out of there! We were so excited. This neurosurgeon is great. We really liked him. And we were so happy to get out of there.

We called Dallas and headed out to home. As we drove into the driveway I could tell Ty was tired but he had had no meds since around 7 that morning and no nap. But he was so glad to see his dad. Those to played for a little and we fed Tyler again ( yep you read right he ate AGAIN) and we continued to play, and play. He even got himself some really nice ice cream.

He took a shower and we got most of the iodine off. He was off to play some more. He got dinner ( yep food again) and he was set to get to bed. He has been in bed since 8 and has not woken up once.

Overall this kid is back to OUR kid. We love him so much. He is amazing and wonderful. We are so proud of him and find him to be such a blessing to us.. Along with the most amazing miracle we could ever ask for.

For more info on Shunts click here and here!

( showing me his owiee!)

Lots of Prayers.

I must ask an apology of the people I accused of sending us a bug, It was not them.

For those who don't know Ty was taken into surgery this evening to have a shunt revision. I can't tell you how thankful I am that we took him in when we did.

As you know from the previous postings that Ty had the "flu" well the "flu" got worse and he was very lethargic. He was just laying in our arms all morning. When ever we would move he would scream. We finally decided to take him in and made a call to the neurosurgeon to see where we should go.

We ended up just taking him to the nearest children's hospital and we were lucky enough that they think of shunt issues like primary children's. We were taken back after waiting for only a few minutes. I am sure.. OK I know ... that one lady was pretty pissed off but she was out in the waiting room calling her kid names. Tyler was much sicker than her.

We got back and got scans done. When they brought them in I knew it was really his shunt. We waited for another several hours because no on in the Arizona valley could find his most recent scans, and primary children's says he has never been a patient there ( reminding you all that he spent the first 3 months there.) and so therefore we had no comparison scans.

We were lucky enough to find a neurosurgeon that decided to go in and check it out. When he got in there he found that not only was it malfunctioning but it was broken in 2 different places. The catheter that goes into his ventricle was broken to the point of not being there any more and a piece off the valve was broken.

Ty has a new hairdo and a very sore head but he is out, safe and hopefully on the mend.

Please say a prayer for my sweet baby boy. I have felt so many emotions of failure, love, guilt, compassion, anger and just plain mean about this whole thing. I hate having the feelings of a preemie mom brought up all over again.

A special thanks to my sweet husband who was able to give us both blessings and calmed his crying wife and sweet baby to the point of relaxation for both. He is truly a blessing to both of us. He is such a great man.

Please pray for Ty and that he mends quickly and goes on to be his sweet happy, bubbly, Barney loving little boy!