Fact:

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!

Dr. Gooch

Dr. Gooch is our physiatrist. She does botox, phenol and refills our baclofen. She is always wanting to know what we can do to be better. What can we do to increase this or that? What can we tweak to make this work easier?

Sometimes she is a Little off her rocker and her coffee gets spiked wit mean stuff. This time a happy nice pill was slipped. This is the best visit in over 2 years. No tears were shed. She told me I was doing great as a mom. She wanted me to have her publication of plasticity and I took it. She said we have done everything right.

She also put down in BIG black letters. THIS CHILD WILL BE GOING TO MAIN STREAM CLASSES. He WILL NOT BE GOING TO A LIFE SKILLS CLASS UNLESS IT IS OVER HER DEAD BODY.


Better believe that we will make sure that is brought up. Officially , we are going to our home school and we are VERY excited about it.

Next post I will share some of the plasticity she was talking about. Awesome read!!

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?

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.

Micro Preemies and Brain Bleeds

According to the March of Dime 534,000 babies are born premature in the United States each year. Babies born under 35 weeks gestation are considered premature. While the " preemie club" from a medical perspective include larger gestation preemies there seems to be a " sub" club. One that not many are a part of. Each year only 50,000 micro-preemies are born in the United States. A micro-preemie is generally considered to be born under 3 pounds and before 29 weeks gestation.

The later gestation preemies are at risk for delays and other "preemie" issues and it is a good idea as the parent of these later gestation preemies to be aware and be proactive in their development.

Sometimes, the members of the micro preemie club can be pretty harsh and not welcoming to the older gestation preemies. ( I know I am guilty) because as a 5 pound preemie and a 1 pound preemie the issues are far more extreme. Meaning the chance of something being "wrong" is less likely and the chances of US having delays is much greater, the ride of prematurity longer and the effects more lasting we tend to have bitter pants!

Long term preemie issues can be tough and it can also be a lonely place. One of the reasons is because those with Micro preemies do get grouped into the later group and everyone asks "well they are fine now right?" question. Well maybe at 34 weeks our kiddos are good to go and "catch up by 2" but at 25 weeks there are RARELY a preemie that has no lingering effects.

If you are in the Micro preemie club the dreaded words is brain bleed. Dreaded, because no one wants to know that inside their growing babies brain is a bleed, a bleed that causes damage. That bleed will leave your child with an uncertain future.

Brain bleeds are the largest cause for brain damage in a child. It is also the reason behind MANY Cerebral palsy diagnosis. For us, that brain bleed has left us with LOTS of days and weeks and months of an uncertain future.

Tyler was diagnosed at 24 hours old with a grade 3 and 4 IVH. I am not certain on the grade at the very start but the end result was a very very bad hemorrhage. Grade 1 and 2 leave usually no lasting effects and if they are lasting they are very minimal. But grade 3 and 4 touch brain tissues and leave a damaging hole in its path.

His heart defect known as a Patent ductus arteriosis needed to be closed to help regulate the blood pressure in his body. The lower the blood pressure the less pressure on his already damaged brain.

At a small 1 pound 11 ounces and just a few days old Tyler underwent heart surgery. It was a surgery to place a titanium clasp on his defect to help close it off. The surgery was done at his bedside. By the time I walked back to our room and had a little breakfast Dallas was already back telling me that they were done and Tyler did pretty well.

His bleed would be the cause of many heartaches and sadness in the coming years but it would pose many health risks as well. His bleed was the result of his hydrocephalus. Having hydrocephalus and draining out fluid in the NICU was the cause of his Craniosynostosis and now at 4 his hard time walking and cerebral palsy and lack of speech is a direct result from that faithful day we were told he had a brain bleed.

One thing we do know is that we are one of the lucky ones where we did get to see our child walk. While getting all of the information we could in the NICU we were told of the possibility that Tyler would be in a wheelchair. While this is still a possibility ( he doesn't have the greatest ability to be stable all lone or without assistance) it hasn't been the case for Tyler yet. He is doing things that most kids with this degree of damage.

We are very proud of him. "Most" Days he works really hard at therapy. He is wonderful at being a kid. He is generally happy, loving and I love him SO much.

Communication AGAIN!

Communication is such a HUGE huge part of life. Sometimes it is UP and sometimes we are really really low. I think it depends on how much improvement we feel or see AND if I feel, as a mom, that I am working with him enough or not enough. One thing I have to remind myself a lot is that I can't change where the damage is in his brain. I can't control what the damage did. Though there is a lot of mommy guilt over it I often still wonder if I did everything I could.

We have had Ty in speech for what feels like forever. We rarely see improvement. In fact so rare that discouragement, defensiveness and anger, mixed with guilt is often found. Why would I be defensive? Because of the above mentioned mommy guilt. Little comments made makes me feel bad or that I am being judged. Anger because I am trying and we DO want him to do these things. And then of course the mommy guilt kicks in again.

Having his IEP the last week and gearing up for the CP clinic at Shriner's my mommy guilt was rising. Its hard to hear that your child is only participating at a specific level because of his disabilities. Its hard to know that they aren't sure if he can do certain things because he doesn't talk. Or sometimes they don't think he can do things because he is so stinking stubborn he won't participate.

While I went to my parents I used the die cutters and got us some Numbers and letters. All different colors and laminated them. Cut them out and we have PLAYED non stop with letters and numbers.

At first I thought it was just gonna be something he would take and throw ( which he does) but he gets what it is. We went through and went through sounds and he can say more than a dozen sounds. Putting them together with something else is still a huge struggle but we are getting sounds out.

Everything we do every single day is trying to get a new sound out for Tyler. Everything we pick up we sound it out. Every circle, shape, etc we ask him what it is and ask him to draw it for us. We encourage him to "pretend" play with whatever he is watching.

In the last 4 weeks he has started doing all those things that we have worked so hard. It is a SLOW process and we are frustrated some days. I honestly feel that communication with him right now is MUCH MUCH easier.

The best thing for me is if I ask him a yes and no question I get a real answer. Not a sound for yes. But a YEAH. A real no and he has an opinion about those yes and No's.

Today we also quizzed him in what letter was what and hew as able to go through and pick correctly. I now get to try again to see if it was a fluke or if he really does know his letters. He knows his numbers and shapes. What more does a 4 year old need right ?

A 4 year old needs a voice. We are finding that voice.