Sunday, August 31, 2014

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!

Friday, August 29, 2014


Thalassemia is an inherited blood disorder. It causes abnormal hemoglobin that doesn't have the protein to carry oxygen in the blood where it is suppose to go causing anemia. The disorder can be mild to severe.

Never in my whole life did I ever see myself sitting in this room. Give me brain surgery any day #Phoenixchildrens #pch #graysongram #betterbeok

That is the diagnosis.

Graysons red blood cells are more oval than they should be. And his red blood cell count, though currently normal, he is on the low end of normal. The test they did on his liver shows that the iron stores that should be in his liver are either super low or non existent.

We add Gummies with iron from Costco since liquid iron makes his skin break out something fierce and barf and more barf.

In a month we redraw labs. If our iron levels haven't moved, we go to the next step.

Long term we don't foresee major issues. With blood work, and a hematologist on board he should be fine. We might see a few blood transfusions in our day but we will be OK.

Tuesday, August 19, 2014

Pots and Kettles

You know that time that you are reading something and you think.. "SHUT UP! I do/did/ OMG that is happening, all the time."

Yeah, that is me.

Facebook. Oh dear facebook... You teach so many lessons.

Recently a friend/acquaintance that has spent the last year going through a trauma posted about people complaining about mundane things, when they should be thankful because they are not seeing  their baby dying or being sick. And I realized I use to do that.

I say use to because I did. Something I learned is that I can't judge a person by what I have had to go through.

Example #1: When I was pregnant and shortly( 8 years or so... cause it still bugs me but I don't say anything any more) after it bothered me to no end when people would complain about being pregnant. One of my best friends from my mission married a girl. They had a typical pregnancy and I was friends with his wife while they were going through their pregnancy. She started to complain about her pregnancy at 32 weeks. She was really adamant about some things and I made what I  thought was a innocent comment and I got hate mail. LOT of it.

See, having had a 25 weeker, I can attest that having a baby early is not the best idea. I have learned that people never think that their kids will never come early. They, like myself, never imagine that the inside of doctors offices would feel like home, or that you will become best friends with your pediatrician. But then it happens. So hearing people complain about mundane things, like being uncomfortable and wanting an early baby would make my hide chapped.
But I have learned to them, they will never experience what I did, in order to be upset about anything else. Therefore, I can't expect the to understand why it would hurt my feelings.

Example #2: On Facebook ( see I told you, the place is FULL of life lessons.) there  is a run on moms who get worried or upset over sending their kids into the operating room for ear tubes or strabismus surgery. They carry on like this ONE surgery is the end of the world. I think " Come on, it isn't brain surgery."   But then I realize that this is just as hard for them as something like brain surgery, or botox is for us. Botox is no big deal. We don't think of the eye surgery or tubes as a big deal because we have done brain surgery, but the feelings of handing over your child is the same going in for small or big. Every mom is torn as the surgeon walks away with their child.
Something that I am not perfect at but am trying really hard is making sure I look at it not from my experience but theirs and then not passing judgment on them for what choices they make.  I don't know why they make the ones they do. I know what  and why I have chosen what I have based on what I have gone through.

I guess, I am calling myself out. The pot calling the kettle black. In hopes of becoming better!

"Let people repent. Let people grow. Believe that people can change and improve. Is that faith? Yes! Is that hope? Yes! Is that charity? Yes! Above all, it is charity, the pure love of Christ. If something is buried in the past, leave it buried. Don’t keep going back with your little sand pail and beach shovel to dig it up, wave it around, and then throw it at someone, saying, “Hey! Do you remember this?” Splat!
Well, guess what? That is probably going to result in some ugly morsel being dug up out of your landfill with the reply, “Yeah, I remember it. Doyou remember this?” Splat.
And soon enough everyone comes out of that exchange dirty and muddy and unhappy and hurt, when what our Father in Heaven pleads for is cleanliness and kindness and happiness and healing.
Such dwelling on past lives, including past mistakes, is just not right! It is not the gospel of Jesus Christ. In some ways it is worse than Lot’s wife because at least she destroyed only herself. In cases of marriage and family, wards and branches, apartments and neighborhoods, we can end up destroying so many others." * Elder Holland*

Friday, August 15, 2014

Hematology/ Oncology ( que dramatic music please)

I am just finishing up my degree at ASU and have the GPA ( I have NO idea how) to be able to at least apply to a few( like 2) local Physician Assistant programs in the Great State of Arizona. If I can't get into either, I will have to keep applying or not go because I can't leave the great state of Arizona either. (Secure borders and all :) Just kidding! Long term care) Anyway, having a child with with extra needs means we meet a lot of people who's children are sick. Some terminal, some with genetic craziness and some with just really bizarre happenings.

As I become friends with these kids moms, I get curious and we talk about our kids conditions, and we compare notes of what doctor is awesome, what doctor could brush up on his people skills and what doctor could just brush his teeth. ( Yes doctors, there is an unground group of SN moms who will either make or break you. It is not limited to specialists and it is a NATIONWIDE thing, so be afraid!)

With these conditions also comes Dr. Google. Yes, you know him,  the ones that say that cough is really the start of Ebola. That is how it works.  Everyone does it.
By no fault of the "real" doctors we see, sometimes googling just helps a soul! But the other day, not even google could help.

Grayson, bless his little heart and GI system, eats rocks. Not just" oh look, your kiddo has a rock and some sand in his mouth" eat rocks. We are talking chewing off bits of the rock, chewing it into powder and swallowing the rock particles. This includes things like hiding in the back of the house to chew on the ledge of the window where stucco can come off, licking the rocks on the pillars at our house and then of course the whole, just sneak the big old fat boulder into the house because we won't notice you in the corner EATING IT, rock problem.

We took him in a while ago and was referred to a PICA clinic.What a bust! Ignored the problem, like awesome parents and dealt with smaller things like seizures and botox and such. ( Sarcasm inserted) But having no neurotypical ( this is what us "special" parents call kids with no magical neurological "gift") sibling or anything to go off what is right or wrong, when we found Grayson screaming and screaming and screaming all the time we thought that there might be something wrong.

Turns out, he screams cause he is three. Hmm. Turns out however, they were less than ok about the continued rock eating and the extreme pale skin my son is sporting. So decided to draw blood. Just a poke. And it evoked no tears from either of us. Came back that he was a " little" on the anemic side.

Fast forward to going in again because he is still screaming and screaming and screaming ( Turns out they do that more when they are tired. And they also sit on their brother's head while he is under water because they can and are three) But it is still OK that he is screaming. They notice no follow up on the anemia was done ( read: I didn't realize they want me to come back and 2) we have been moving and having botox and having LOTS of seizures so I figured a little dirt and rocks... whatever)

Again a finger poke..... Anemic.

Go get more blood work.

3 days after finger poke we go get the blood work done. His hematocrit is LOW. Like really low. We also asked for a CBC and along with that comes the WBC  or white blood count which helps determine if the body is fighting something off.

I get a call and a voicemail saying to call the office. The Nurse practitioner is gone for the day but the MA ( medical assistant) was given the information to share that I needed.  The conversation went like this:

"NP said that Grayson's hematocrit has dropped even further and he needs to get in for testing as fast as possible. We have sent over a referral form to the PCH hematology and oncology. He needs to get in as soon as possible and they are looking over his records right now. What family history do you have with things like, childhood cancers or renal failure?"


I don't even need google to figure out what the heck is going on. I ask her nicely for the CBC and white blood cell count. See, if I know that, then I won't be blind sided by anything that is life threatening before walking into oncology.  She insists that she can't give it to me, that I just need to call the PCH number she gave me and get on the schedule.

I hang up. Cry. Sob. Scramble to call anyone I know that has a MD, DO, PA or NP at the end of their name. I just need to know what the other levels are at!! I make a few sobbing phone calls. No answers. I am throwing up at this point ( see I have a anxiety problem... more about that later)  more sobbing and another call back to leave a message for the PA to call.

While doing that I was on with hematology and they were working to get him into the right place and would " let me know" where to go and when.

PA from our peds office called. He was trying to get to the phone to call when he saw the information that the girl DID give me and said she is going to be in panic mode. And he was right. Cause he is cool like that.

I was horrified that Grayson might really be sick and that this whole time we let him eat rocks and not poop for weeks and yell at him for screaming ALLLLL the time and now he had CANCER!! What!! What kind of a person was I!! ( those were the thoughts I had.)

Rest assured, the long story you just read was all just drama. Grayson is FINE. He has a LARGE hematocrit problem and he either doesn't absorb iron, has GI issues contributing to his lack of absorbing nutrients, is Mal nourished ( you know.. no big deal) or has a Mal absorption problem. He needs to see hematology and oncology and will. But he is not "STAT" like the nurse indicated. It is more like let the real kiddo's get in.  He probably could use a transfusion. It is pretty low, but first find the root of the problem and move up from there.

A huge thanks to the people who saw the ugly face cry when my worse fears were cancer. Another huge thanks to TJ Barnett who got 2 voice mails while ugly face cry was happening, Aunt Nicky who was trying to figure out why ugly face crier was still crying and call to help more and mostly a thanks to the PA who thinks I am smart and knew that oncology+low hematocrit+ I won't give you any more info + STAT= this mom is crying and freaking out and called to figure out what in the world was REALLY going on with me.

awwww.... Stupid Iron

Monday, August 11, 2014

A diaper bag?

For those that are still in the "baby" stage, a diaper bag is a must. But when we hit the big boy stage, no diapers should be needed...... Unless you have a special needs kiddo. We still need to a small bag. Tyler is mostly potty trained and so is the 3 year old we have!

We like to have a few things with us at all times. Like trains and planes and a book. So my GENIUS mind thought up the best way to take the stuff we have to have with us, without toting a large diaper bag.

Here is the 101 on a genius way to bring a few supplies in a cool Mom of a boy way:

At "back to school time", it is the best time to find lunch boxes of different varieties. For us, having a excited 3 year old who has an obsession with fire trucks, that is our current lunch box of choice.


First in our lunch pack is a large garbage bag. It is a HUGE necessity.


The largest garbage bag that you can find is perfect for using as a large child changing pad. Most places don't have changing tables for kids who have special needs that are larger than infant sizes. If you have to put them on the floor in a bathroom this is a MUST HAVE. You can then open the garbage bag and dispose of the diapers that need to be taken care of.

Next add a bag of wipes and a few diapers of whatever size diaper you need. It is big enough to hold my wallet, and a small bag of cars and trains. We take this bag FOR SURE to the pediatrician's office, because it has a train table and no trains. And the trains that are there generally have lots of germs.


The bag actually holds quite a bit of stuff. It also holds a change of clothes and a small book.

So there is my little hack of the day... A special needs changing bag.

Wednesday, August 6, 2014

I have no witty tittle and I am all done. There are boxes everywhere and most of all we are in a world of chaos trying to start a routine. The hardest part. Seizures.

Seizures.... That is right. Not just one, but lots. LOTS and LOTS. Like ten to 12 a night with 5-6 in the day time. We have an exhausted 8 year old, and angry 8 year old. A tired mom, a strange acting 3 year old and very tired dad.

Tomorrow we discuss toilet adapting at school. He holds it all day. We are going to end up admitted if we can't get some BMs and pee coming soon. Ear check for baby tomorrow and unpacking.

New meds start in the morning.

Sleep.... We all need sleep

Tuesday, July 29, 2014

Ictal crash. I hate seizures. #seizurerage and seizures suck

Enough said..... Seizure suck. Post Ictal rages are enough to make even the toughest dude crash...