Pre Trip for Perrin: MAW WDW/GKTW for Star Wars Weekend!! June 2-9 2011!

[Perrinsmommy]

So, where to start? My name is Susan, mom to 3 beautiful children; Perrin-age 8, Julianna-age 4, and Aleksander- age 2. 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. Wow, what a mouthful! LOL. 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. In November '10, I call the local chapter of MAW and did a short intake over the phone and gave the office our Neurologist's phone number. I hadn't heard anything in a couple of months so I called the local chapter a few days ago. GREAT NEWS!! We had been deemed eligible right away and a letter was apparently sent back in November, I guess that got lost in the mail... We also have already been paired with volunteers. They should be contacting us this week to set up a time to come meet with him to "discover" his wish. I have already told the local chapter what his wish is and they said it won't be a problem to set up. He wants to go to WDW for Star Wars Weekend to meet Darth Vader and the Stormtroopers! I think I failed to mention that he is THE BIGGEST Star Wars Fan!! LOL. The woman at the local chapter said we should be able to set up the trip for this June!! More to come after we meet with the volunteers!!!!

More to his story:
The Birth and NICU Story
Bumps Along the Way!
The Shunt Story
How he is doing today!!

 

[tinytreasures]

to Dis
So glad your son is getting his wish. My wish daughter is a preemie too.

 

[blessedmom4]

I am so sorry to read about the botched surgery; however, I am happy you are planning a MAW trip!!!
Looking forward to pictures!!!

 

[Perrinsmommy]

Thanks for taking the time to read. I didn't include all the ups and downs. Its the first day of spring break in my house and I have 3 very crazy kids running around. Just another day in the life I guess. I will post a more thorough "road trip" when I have a day to think! LOL Perrin is waiting patiently for the trip to be coordinated thru MAW here in TX. They have been very helpful every time I call though.

 

[blessedmom4]

Thanks for taking the time to read. I didn't include all the ups and downs. Its the first day of spring break in my house and I have 3 very crazy kids running around. Just another day in the life I guess. I will post a more thorough "road trip" when I have a day to think! LOL Perrin is waiting patiently for the trip to be coordinated thru MAW here in TX. They have been very helpful every time I call though.

Cute Pics!!!!

 

[Perrinsmommy]

Cute Pics!!!!

Thanks!! He made the one of Disney World on facebook, the second one is of his Scout Day where he wanted to try on the astronaut helmet, then he was Jango Fett for Halloween! He sure is my cutie pie!

 

[blessedmom4]

Thanks!! He made the one of Disney World on facebook, the second one is of his Scout Day where he wanted to try on the astronaut helmet, then he was Jango Fett for Halloween! He sure is my cutie pie!

He did a GREAT job and he IS a Cutie Pie!!!

 

[Perrinsmommy]

So, now that I have a little time, 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.

 

[billwendy]

WOW - what a story!!! Im so sorry he has had to go through so much!!! Does he know about the trip yet????

My nephew had brain surgery to remove a medulla blastoma and due to the growth of the tumor, he had some damage to his cerebellum. One thing that really helped him in his therapies was the Interactive Metronome program. Has your son tried that yet? It helps to get both sides of the brain to work together better - improves timing and coordination etc. Im an OT at a local children's hospital, and we use this program alot - seems to jumpstart the kids in their therapy!!

 

[blessedmom4]

Oh Wendy, I second that program! It did wonders for my David.

Thank you for sharing more of Perrin's journey! God Bless you both!

 

[Tonyababyrn]

WOW what a story. He has been through a LOT! I'm a NICU nurse in central Louisiana. So glad he is doing well now.

 

[Perrinsmommy]

WOW - what a story!!! Im so sorry he has had to go through so much!!! Does he know about the trip yet????

My nephew had brain surgery to remove a medulla blastoma and due to the growth of the tumor, he had some damage to his cerebellum. One thing that really helped him in his therapies was the Interactive Metronome program. Has your son tried that yet? It helps to get both sides of the brain to work together better - improves timing and coordination etc. Im an OT at a local children's hospital, and we use this program alot - seems to jumpstart the kids in their therapy!!

NO! We had not heard about that program! We have an appt with his neurologist and new neurosurgeon (more on that in the near future. Just have to type the rest of the story LOL) coming up very soon. I will be asking about that since he now has corpus colloseum damage. Thanks for sharing that information. He has Private PT and OT and does OT and Speech in school. He does know about the trip and has been telling all his friends!!

 

[Perrinsmommy]

WOW what a story. He has been through a LOT! I'm a NICU nurse in central Louisiana. So glad he is doing well now.

Thanks. He has had a long hard road.

 

[Perrinsmommy]

So, from 2003 to 2005 it was difficult but par for the course for special needs children. When he was 9 months old we 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 he 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.

 

[Perrinsmommy]

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. As we were being wheeled back into the OR prep room, one of the nurses asked another "wasn't this boy here a couple of weeks ago for the same thing?" The other said "yes, the dr pushed the catheter too far into the brain and there weren't enough holes to drain the CSF." My husband and I were in SHOCK!!!! this was the first we had heard of this. The dr had told us everything was fine. Turns out when she pushed it too far, she nicked his corpus colloseum. That cause more brain damage. It probably caused his Blepharospasm and Meige's syndrome.

 

[Perrinsmommy]

Since the shunt malfuntion/surgery mistake, we have been slowly trying to rebuild what was broken down. We change 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.

She is sooo precious and loves him so much. Just seeing her turns his mood around!! So that is our story. Its a long one, but he is worth every minute of the stress and worry I have been thru!!!

 

[LVMom23]

Hey Susan! I'm so glad you started a PTR I will be following along!

Perrin has definitely been through so much. It is hard watching our children suffer with so many question marks on how to treat them successfully. Having the surgeon cause more brain damage is just heartbreaking!

My 10yo son (not the wish child) would be so jealous that you are going to go Star Wars weekend! I can't wait to see it through Perrin's eyes

 

[Mom2Miracles]

WELCOME! I can't read all of your sons story as it hits too close to home, but I wanted to say HI anyways. I am looking forward to hearing about your journey to get to Disney!! Can't wait to hear about your visit today with the MAW volunteers!

 

[billwendy]

Oh Wendy, I second that program! It did wonders for my David.

Thank you for sharing more of Perrin's journey! God Bless you both!

Judy!!! Thats great!! I am an IM trainer at duPont Hospital for Children in Wilmington, DE. Would you mind pm'ing me about what changes you saw in him!! Im so interested in hearing everyone's story with IM. It just makes so much sense, I dont know why anyone would not try it!!

NO! We had not heard about that program! We have an appt with his neurologist and new neurosurgeon (more on that in the near future. Just have to type the rest of the story LOL) coming up very soon. I will be asking about that since he now has corpus colloseum damage. Thanks for sharing that information. He has Private PT and OT and does OT and Speech in school. He does know about the trip and has been telling all his friends!!

Ask his PT/OT about it, maybe they are certified IM trainers!!! That is so cool that he is excited about his trip!!! When will you know the dates for sure?

 

[Perrinsmommy]

We met with our wish givers tonight for 2 hrs. We completed all the paperwork and they were talking about sending us in May. We asked for other dates because Perrin doesn't get out of school until May 28th. That would cut into star wars time, LOL, so we asked to go the first weekend in June! So tentative 6/2-6/9! They are saying we will stay at GKTW, which we are excited about! They are going to throw him at send off party at his favorite restaurant!! Hopefully we will hear soon about everything.