Emerson Party!

Thank you so much to Emerson Process Management for throwing such an AWESOME departure party for Perrin! He had a blast! He was talking about this party for days!!!!

Perrin with his hardhat and pretend Lightsaber

Perrin then met Vader, Leia, and 2 stormtroopers!!

 He even got to fight Vader!!

Victory Bow after striking down Vader.

Of course Daddy had to get in on the action!

Thank you to Emerson for the Wonderful party and all of the Wonderful gifts! This is a day we will remember FOREVER!!!

Walt Disney World for Perrin's Make-A-Wish Trip! Star Wars Weekend!

There is just sooooo much to write about here. Perrin picked Star Wars Weekend at Disney World for his trip. It was one of the most wonderful experiences that we all have had.

   We were flown out to an awesome place called Give Kids the World where they put us in a little house for stay. There was so much to do there, but Perrin was ready for Disney, so we headed out. 

  I don't even know where to start in regards to Disney. We spent two days at Hollywood Studios because that was where all of the main Star Wars stuff was.  We didn't even get to see half of Disney while we were there because there was just so much to do! A perfect reason to go back one day. The Star Wars stuff alone was amazing. Disney went the full mile and then some. 

  Perrin got to meet Chewbacca and ride a speeder bike. He met so many characters from the movies. His little brother and sister went crazy running around trying to get autographs from different character and actors. They got to do Jedi training and Perrin fought Ventress and won. Julianna got to meet Ashoka and Perrin met Rex and Cody! 

  Perrin got to do lightsaber training with Ray Park, who was unfortunately unable to meet him after. He did get to meet with Jeremy Bulloch though. Jeremy was so friendly and kind to Perrin that we were automatically fans. He let us video tape him and everything. 

  On to Star Tours. OMG. One of the coolest rides ever. Perrin must have ridden it at least 14 times! Then they got to walk in the Star Wars Parade with the celebrities. Julianna walked with R2! After that they enjoyed the Hyperspace Hoopla. 

  I didn't even get into the rest of the time at Disney. It was fantastic. It was magical. It was more than we thought it would be. The staff was amazing. The rides were awesome. I wish we could have remembered some of the names of some of those who really helped Perrin. They added so much to the experience. Thank you to all of them. Thank you Disney World! 

Update from Neuro!

Spoke to our neuro tonight at around 7:30 pm, have I mentioned how much we love our neuro! Always makes sure to keep in touch, even after hours! He wants to make sure that he is getting enough sleep and if he continues to be hard to wake up and more spells of confusion to call him back. So back to the waiting game and just to make sure he is not alone at school or anywhere.

Something confusing this way comes?

So here is somewhat of a timeline of what happened at school yesterday.

He goes to his resource class at 8. At 8:58 they send him back to reg ed. He sits down at his desk to eat his snack. (this was the last thing he remembers) His regular teacher was across the hall because he has a student teacher doing "solo teaching" all this week. They had standardized testing in 5th grade so he didn't have resource class on Mon and Tues. He gets up and tells the student teacher he has to go to resource, even tho he just came back. The time is now 9:05-9:10. She says ok and sends him down because he is in and out of her class room at different periods of the day and she doesn't really know his schedule (sounds like she needs to learn it!) He goes down to resource (at this time it is now 9:16) I think he sees the time and his brain "clicks back on" He repeatedly tells the resource teacher "I had to leave at 9" Now he is unsure of himself and says he lost track of time and "Had to leave at 9". My reasoning, and I am NOT a dr and don't pretend to be, is that he had a amnesia seizure of some sort. They have been worried about absence seizures for awhile but we can't get it to show up on EEG. Still waiting to hear from neurologist. Still kind of mad that I wasn't followed up with yesterday. 


Teacher was concerned so they brought him to the nurse and called me.

Welcome to Holland!

Every parent of a special needs child has run across this essay by Emily Perl Kingsley. It sums up the "surprise" of having a special needs child when you are planning the birth of your child.

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Make A Wish!!!

In November of 2010, I submitted Perrin's name to Make A Wish after we got the diagnosis of blepharospasm and Meige's syndrome. Upon research done by my husband and I, we found out that Perrin has the degenerative version of blepharospasm. It is a fairly rare disease, affecting only one in every 20,000 people in the United States.

Some of our research turned up these facts:

From http://www.blepharospasm.org/

-Blepharospasm usually begins gradually with excessive blinking and/or eye irritation. In the early stages it may only occur with specific precipitating stressors, such as bright lights, fatigue, and emotional tension. As the condition progresses, it occurs frequently during the day. The spasms disappear in sleep, and some people find that after a good night's sleep, the spasms don't appear for several hours after waking. Concentrating on a specific task may reduce the frequency of the spasms. As the condition progresses, the spasms may intensify so that when they occur, the patient is functionally blind; and the eyelids may remain forcefully closed for several hours at a time.

-Blepharospasm is thought to be due to abnormal functioning of the basal ganglia which are situated at the base of the brain.

-Blepharospasm can occur with dystonia affecting the mouth and/or jaw (oromandibular dystonia, Meige syndrome). In such cases, spasms of the eyelids are accompanied by jaw clenching or mouth opening, grimacing, and tongue protrusion.

-There is, unfortunately, no cure.

So it is a fairly hard disease for him to have at 8 years old. It affects him when he's tired, stressed or nervous. On March 10, 2011, I decided to call the local chapter of Make A Wish back to check on the progress of everything. Great News!! Perrin had been deemed medically eligible for his wish almost immediately back in November. They sent a letter, which I guess was lost in the mail. We also had been already paired with volunteers, or "Wish Granters", They also asked if I happened to know what his wish was. Anyone who knows Perrin knew what it was right away. He is a huge star wars nerd. His wish is to go to Disney World for Star Wars Weekend to meet Darth Vader, the Stormtroopers and the bounty hunters. We met with our Wish Granters on March 15, 2011 for 2 hours!! We signed a bunch of paperwork and they were talking about possibly sending him in May 2011. Since Star Wars Weekend is only May 20-22 and May 27-29, we chose the beginning of June since he will be out of school by then. So we set our dates for June 2-8.

The past is the past.

Since the shunt malfuntion/surgery mistake, we have been slowly trying to rebuild what was broken down. We changed neurosurgeons. We now have a FABULOUS neurosurgeon. At the advice of our neurologist, we went to see a neuropsychologist. We learned a lot of new things. He has been diagnosed with ADHD, dysgraphia and depression. We were advised for him to start seeing a counselor because he is very aware of his medical conditions and disabilities. They said he knows that his life will be very hard. I have sat him down and explained to him, while his life will most certainly be hard, it will be wonderful because he is our baby boy and we love him and will help him in any way possible. He is a happy boy most of the time and he now has an emotional support animal named Stella.

Every Saga Has A Beginning.

So, from 2003 to 2005 it was difficult but par for the course for special needs children. When he was 9 months old my husband had to beg his PCP to do a CT scan because he was crying constantly, holding his head or sleeping for 15 hrs out of the day. Finally she came back with a referral to a neurosurgeon. Said he had a severe case of hydrocephalus. Our neurologist argued with us and said she was the dr and we didn't know anything. We decided to go behind her back and go to the neurosurgeon. He told us we had 1 day to get the surgery to put a VP shunt in. The hydrocephalus was preventing Perrin from sitting or even crawling on his own. We had the surgery done in Oct of 2003. The day after surgery, he was sitting up and playing. It was the happiest I had seen him in A LONG TIME! After that, he had a circumcision, because the skin was growing around the urethra, therapies, got weaned off oxygen and phenobarbital at a year and a half old. At 2, he was diagnosed with Cerebral Palsy. The neurologist at Children's Hospital in New Orleans attributed it to the Grade IV brain bleed and the hypoxia at 2 days old. In August 26, 2005, we were set to have a nissen re-do and a hiatal hernia stitch up. The day of surgery he woke up with a 104.5 degree fever, therefore canceling surgery. Later we would see this as divine intervention. On August 28, 2005 we were ordered to evacuate New Orleans due to Hurricane Katrina. Had he had the surgery, he would have been in PICU during Katrina and had to have been air evac'ed out. WHEW! We ended up in Branson, MO for 6 months. In Dec 2005 He had the Nissen Redo and Hiatal Hernia surgery in Springfield, MO. We then went down to San Antonio for a titanium rib evaluation. His rib are malformed but luckily it is seen as "just a cosmetic issue" Since they wanted to re-eval him in a year, we decided to move to TX. My inlaws lived in Austin so we figured it would be nice for him to be near his grandparents. We settled in Round Rock and he started PPCD (preschool program for children w disablities) thru the public school. As he went thru the years, he continued to progress and by Kindergarten, he was mainstreamed with aides, resource and therapies. By 2nd grade, he had a great group of friends. A couple of the parents in class have likened him to Norm from Cheers. When he walks into class everyone screams out "PERRIN!!!" It is great to hear how much his classmates love him and look past his differences. By Thanksgiving of 08, he was starting to regress and have mood changes. We did a CT scan and it showed that his shunt was clogged up. He needed yet another surgery. We were unsure as to if it was just the tubing in his belly that needed replacing or if it was the tubing in his brain as well. Dec 17 he had his shunt revision. The neurosurgeon said that everything was fine. She had to replace the whole system because it was completely clogged up with protein. The next day he was MISERABLE! He could barely sit up, when he did he gagged and he was refusing to eat. 2 day later, he was eating (not much) and the neurosurgeon said we were to be discharged. I objected because he wasn't drinking or eating and he was still gagged a lot. He couldn't handle the pressure of his brain. She reprogrammed his shunt and let him stay one more day. Next day she said he needed to go home. Once again, I protested. He was still refusing to eat and was only drinking enough to stay hydrated. She said he had to get used to the pressure (said that was why he was gagging every time he sat up) and the only way to get him to eat was to force him at home where there were no IVs for hydration. So we went home. The entire trip hm, 45 mins, he gagged. We went back to the dr 3 days later. He had stopped gagging and had slowly starting eating and drinking again. She said he could return to school the following week. He went back and on Monday, Tuesday and Wednesday he was going to the nurse's office. He was having bad headaches and was nauseous. I brought him into the ER and the neurosurgeon came in and tapped his shunt. It wasn't draining, which meant it was malfunctioning and needed to have emergency surgery to pull the catheter back through his brain as there were not enough holes in the ventricles to drain the fluid. Also, there was a leak in the cap of the reservoir, so that would need to be replaced. He was in surgery for about and hr and a half then wheeled up to his room, looking better than the first time!!! This time the surgery was perfect. He went home and was functioning great.

Every Journey Has A First Step.

I want to share Perrin's whole story. I was 20 years old when I got pregnant. It was a big surprise to my husband and I, we had only been married for 2 months. We were very excited to start our family. The pregnancy was normal. No problems until December 24, 2002. It started as a normal day and I was 25 weeks pg. I headed out to work and was there for about 15 mins and this excruciating pain started in my back. It got so bad I could hardly stand up. I called my mother, who lived close by, and she came there and picked me up. She rushed me to the hospital and the ran me up to L&D. They did an ultrasound and saw that I was already 3 cm dilated and my bag of waters was bulging. They started me on magnesium sulfate (the worst stuff on the face of the planet!!! Makes your veins burn, your head spin and you have an uncontrollable urge to vomit) and gave me steroids for his lungs and demerol to make me sleep and as a painkiller. The rest of the night is a blur. What I remember is at 12:30 pm I was admitted, 2 pm the doctor came in to talk to me and he pulled my husband out into the hall, 6 pm my water broke, 9:35 pm I feel him drop down and a strong need to push. I push the nurse call button and she comes running in and while trying to call the NICU staff, she is holding his tiny head in and telling me not to push. At 9:38 pm on 12/24/2002 Perrin was born, 1 pound 13.8 ounces, 14 inches long. All I saw was his limp body being picked up and put under the warmer surrounded by nurses and doctors. I hear them repeatedly shout, "he's not breathing" "we need to intubate NOW!" I start FREAKING out! My husband finally breaks through the throng of drs and nurses to see that they have him intubated, bagged and started to pump air into his little body. Then they take off running with him to the NICU. I still have not seen him at this point. Around 11, the perinatologist comes into talk to me. He warns me that Perrin is in very bad shape. Most preemies born at this age will be severely disabled. There is a large chance he may not survive, but he was bigger than they expected and longer than they expected. At 12:30, I get to see him. My beautiful baby boy was so tiny and I couldn't even touch him. I could barely talk to him because they didn't want him stimulated. He was pretty much in a drug induced coma. The next day, Christmas Day, I was discharged from the hospital and went home after spending a large part of the day sitting beside him in the NICU. On 12/26, We tried to go up to see him and kept getting turned away. No explanation. Just "No, you can't come into the NICU. Call again later" So we finally just go up to the hospital and sit in the waiting rm. The Neonatologist comes out to talk to us and explains why we couldn't go in. Perrin was put on a ventilator when he was intubated. The vent was too strong for his little lungs and it blew his left lung and the air that leaked into his chest cavity collapsed his right lung. He was hypoxic for 45 mins. They finally got him stabilized and allowed us to go in to see him. He had a chest tube in and looked to be in pain. I couldn't stop crying. As we sat bedside, the dr asked "If he destats would you like to hold him as he dies?" and "How long do you want us to fight to keep him alive?" I was stunned. I said you fight until you can't anymore. There is not stopping. He gradually got strong enough to be transferred to Tulane University Hospital in downtown New Orleans on New Years Eve. He had to have a PDA ligation that they did not have a surgeon at the local hospital. He was at Tulane for 3 months. While there, he had 3 surgeries, 2 PDA ligations and a nissen fudoplication/ Gtube placement and a bout of seizures. Turns out, the seizures were a type of meningitis. They treated him with phenobarbital and antibiotics. On April 5, 2003, Perrin was finally "healthy" enough to go home. He came home on 3 medication and oxygen but it was great to have my baby home.

Every Generation Has A Legend.

So, where to start? My name is Susan, mom to 3 beautiful children; Perrin, Julianna, and Aleksander. My oldest was born at 25 weeks at 1 lb 13.8 oz. As a result, he has CP, Hydrocephalus controlled by a VP shunt, blepharospasm, Meige's Syndrome, dystonia, ADHD, and dysgraphia. He just had his 11th surgery in Dec of '09 for a shunt revision. Unfortunately, the neurosurgeon made a mistake and pushed the catheter too far into his brain and nicked the corpus colloseum. So, with that, he regressed horribly. Complete 180 in attitude, school work, attention, etc. We have been slowly progressing back to where he once was but it is still an uphill climb. He has been quick to anger, depressed, and just overall more moody than he ever was.