Tuesday, August 30, 2011

August Recommendations

Dear Reader,
Please explore these wonderful posts I have shared below about being special needs.  The eloquence demonstrated by these bloggers has captured the essence of everything I strive to share about our special needs journey.  
Please come back and share your thoughts as well.  Stacie

How it feels to be special needs:

"CP in a Jar" from Butterfly Dreams

 
How it feels to be a special needs parent:



"Welcome to My World" found on Noah's Miracle. Also recommended on the site is "5 Things You Should Know" from Hope4Katy.

"I am tired..." by I am fearfully and wonderfully made.


I am broken and you Can't Break Me "As Time Goes By"

Unhandicapping the Disabled shares how the weight of "Medical Debt" weighs on the special needs.

What NOT to Say.... What to Say on Support for Special Needs.

Just a Word by Fighting Monsters with Rubber Swords.



Chronic Sorrow on Life with a Severely Disabled Child.



Groups and Forums:

For the Love of Blogs now has a group for "Parenting Special Needs"

Haunted and Convicted by Special Needs Ministry: "A 7-year-old boy with Cerebral Palsy was discovered brutally murdered by his father on Sunday, August 14, 2011 in Louisiana..." 


Equipment, Supplies & Resources:



Assistive Technology post on Love Life and Be Gentle.



Medical:
"What is hydrocephalus" by James Makker, MD

Activities & Outings:

Play park for all Morgan's Wonderland.  On LinkedIn Linking Cerebral Palsy group: "Morgan's Wonderland in San Antonio, Texas is awesome. It is a play park for kids w/ disabilities. The kids get in free, It includes wheelchair swings, padded and covered play areas, gym, wheelchair car rides, sensory room, fishing and picnic facilities. We took my son Sean, he loved it. It is all volunteers and community supported. No affiliation, just a dad's perspective." 

Upcoming Events:


Bullying:


Local to SWFL:

Integrity Biofeedback Inc. 
&  Academy
present
Anatomy of Emotions Course


An in depth yet practical teaching on the power of emotions, addressing such questions as...
  • How do emotions impact my physiological health and well being?
  • How does my ancesteral emotional baggage influence my conscious and unconscious decisions?
  • How can I identify my belief systems about God, myself, and my relationships that are sabotaging my life?
  • Why does "The Secret" work for some and not for others?
  • How can I "reprogram" my thinking from negative to positive in a short period of time? 
Are you ready for a LIFE change? 



Monday, August 29, 2011

NICU Haunting

John has been rising and leaving home around 5 am each Sunday for the past month.  A local college has scheduled John's IT services every Sunday morning through the end of the year. The reason is to prevent disruption to staff and students.  It's a challenging schedule but he is happy to take work when it is available.


He came home mid-afternoon and was greeted by the usual excitement by the boys who knew their fun was just beginning as they prepared for an afternoon swim and Riley's birthday celebration.  

My boys spend the afternoon together.


Clearly, something was bothering him beyond the early rise and hard work he had just put in.  


"What's going on?" I asked.


"I just spent the day in the NICU." John answered.  "Today I was scheduled in the nursing area of the college and started with the fully functioning teaching NICU."  

Of all places to land on the anniversary of Riley's traumatic birth which began our journey with two months of the NICU.  What an uncanny, cruel circumstance to land him in one of the most distressful places of Riley's young life on the actual birthdate.


How strange life can be.  If you recall, I actually chose to post a picture of Riley in the NICU yesterday having no idea where John actually was at that moment.




Ready for his birthday dinner wearing giraffe print.
If you gotta wear a bib - it should be really cool.
My favorite bibs are birthday gifts sewn by Ms. Jeanine and Ms. Wendi.


We are all special... by Stacie Wiesenbaugh

Saturday, August 27, 2011

Parents urged to watch for common virus - cape-coral-daily-breeze.com | News, sports, community info. - Cape Coral Daily Breeze

Parents urged to watch for common virus - cape-coral-daily-breeze.com | News, sports, community info. - Cape Coral Daily Breeze

‘RSV’ can severely sicken young kids

August 27, 2011
By MEGHAN McCOY (mmccoy@breezenewspapers.com) , Cape Coral Daily Breeze

We interviewed yesterday with the lovely Ms. McCoy to help spread awareness of Respiratory Syncytial Virus.

Although babies who are born before 36 weeks are at high risk of catching the respiratory syncytial virus, young children up to the age of four are also at risk.
Every year RSV affects between 4 million and 5 million children who are younger than 4 years old. In addition, more than 125,000 children are hospitalized every year from RSV.
Pediatrician with Lee Physician Group Tom Schiller, MD, said that RSV is a very common virus that has been around forever. Although the virus affects people of all ages, it can make young children extremely sick, he said.
The symptoms for RSV usually include a nasty head or chest cold, fever, runny nose, cough and wheezing, which are much like cold symptoms. Worst case scenario, RSV can cause lung disease, heart disease and cause a baby to stop breathing.
"It is a nasty little virus," Schiller said.
If a child is cranky, pulling at their ears or running a significant fever, Schiller said they need to be seen by a doctor.
Once the virus affects the child, it can occur over and over again.
"First time you get it is usually the worst," he said.
Schiller said after a child attracts the virus, they may wheeze with their next cold without it actually being RSV.
"It could happen for a couple of months," he said.
The symptoms can peak in small children between the ages of 2 to 8 months old. It can especially affect premature babies.
When the virus affects really small children, it goes down deep into their windpipes and causes inflammation and destruction, causing them to wheeze, Schiller said.
"Half of the kids that get RSV are later diagnosed with asthma," he said, adding that it can happen at any point.
RSV, he added, is the leading cause of lower respiratory tract infection in infants and young children.
The virus usually comes in outbreaks during the winter months, according to Schiller.
Although a sample can be taken from a young child's nose to run tests to see if he or she has the RSV virus, Schiller said they generally cannot act on the diagnosis.
A preventive medicine - synagis - can be given to the child to increase their immune system to help protect them against RSV. Schiller said the medicine is very expensive because it is a monthly inter muscular injection. Although it is expensive, it is cheaper than having a child go into the hospital, he said.
Schiller said the last vaccine that was created for RSV was in the 60s, but was later banned because it killed people, rather than helped them. He said research is still being done to create another vaccine to help with the virus.
With 80 percent of children in day care settings, the virus is easily spread through the simple touch of a hand.
"Hand hygiene is really the only tool you have to prevent it," he said about the virus.
RSV became a strong concern for Stacie Wiesenbaugh and her husband John Buck when their son was born early and was faced with many complications.
Wiesenbaugh had a very healthy pregnancy until she entered her 32nd week and had to have an emergency Caesarean section on Aug. 28, 2002 because her son Riley had suffered an in utero grade four massive brain hemorrhage.
Riley was born four pounds, six ounces.
"He had many complications due to the hemorrhage," Wiesenbaugh said. "We actually didn't think he was going to survive the first night."
A few days after Riley was born, he had to undergo surgery so a reservoir, a piece of hardware, could be placed into his skull so the doctor could remove the excess blood from occuring.
"The hemorrhage wouldn't stop," Wiesenbaugh said, which could have been deadly because when blood is not contained, it can cause extra pressure.
Due to Riley's size the problem continued, which involved another surgery to place another piece of hardware into his brain. The VP shunt, Wiesenbaugh said, was designed to allow the body to take care of the access fluid by itself.
Riley was released from the hospital two months after he was born, which was close to his actual due date.
Because of his condition, the family had to take every precaution they could to keep him healthy, which led to discussions of RSV.
She said they had to protect his compromised lungs, which were already receiving help from a respirator.
"He was high risk for picking up this virus," Wiesenbaugh said. "This kind of infection would land him back in the hospital easily and be life-threatening as well."
The hospital in Los Angeles told the family about the synagis injections to help prevent the possibility of Riley attracting RSV.
Once a month for two years Riley received the injection, which kept him safe from catching the virus.
"It was worth it because we didn't want to end up in the hospital," she said.
Although Riley will be 9 years old on Sunday, the family still practices prevention measures to keep the virus away. She said they kept him home when he was in a compromised state and did not allow people to approach and touch him. In addition, when they were at home, they were not shy about asking people to wash their hands before holding or touching Riley.
"Even though he is beyond the age of 2, we still are very careful," Wiesenbaugh said.
When she can educate others about the common virus she does by instructing them to wash their hands on a regular basis and sneeze and cough into the inside of their elbow so germs are not spread.
"It has been a long ride," she said. "This birth changed everything about our lives."
The parents were blessed with another son, Ronan, who is healthy and full of energy.
Wiesenbaugh said the progress Riley has made since he was born is amazing. He attends Rayma C. Page Elementary School as a fourth grader, where they began a special needs class for him, which has grown with other students since its inception.
"He comes home happy and they do everything they can for him," she said.
Due to many of his systems being compressed at an early age, Wiesenbaugh said Riley is nonverbal, developmental, visually and hearing impaired. He does not communicate through spoken word or sign language.
"The way that he will squeeze your hand will tell you if he is relaxed or stressed. Since he cannot walk or jump with joy, he will kick his legs rapidly in the wheelchair if he is excited," Buck said. "The pitch of his laugh can tell you if he is happy, scared or even in pain. If his sound (nonverbal) mimics yours in beat, pitch or tone he is in a communicative mood. In sum, it is his own language that we had to learn and we mutually learn given his impairments."

Wednesday, August 24, 2011

Seizing Logic

October 19, 2008

Seizure's did not come every day or even every week during Riley's sixth year.  When a seizure did arrive, it was an Event.  Occasionally it even meant calling in paramedics and a trip to the ER to put an end to Riley's convulsions when our own medications and interventions were not enough to help him.
One day, driving my boys from one appointment to another, Ronan observed a Walgreens drugstore.  He explained to me as we drove by the landmark in his matter-of-fact three year old manner: 

“If I go to Walgreen’s, I don’t have seizure’s!” 

He had put it all together!  



He recognized Walgreens yet the McDonald's next door to it went unnoticed.  Not many three-year olds have seizure in their vocabulary or need to consider how to manage the disorder.  I laughed.  I cried.  How sad that he had to understand seizures.  How amazing that a three year old was planning how not to have seizures.  


 We are all special... by Stacie Wiesenbaugh

Sunday, August 21, 2011

Success Story...

Pleasantly surprised to find a photo of my husband this morning as I was reading the paper.  In fact, it was the only sight of John I have had today since he was out the door by 5 am for work.
John Buck, a technician for The Client Server, works on a customers computer at the company’s office in Bonita. / ANDREW WEST/news-press.com
Success Story: Technology firm The Client Server Grows