Tuesday, March 31, 2009

Missing Pieces

Please be sure to scroll down to the bottom and pause the music box before playing video.

Rock Autism

April is the month of Autism awareness, with April 2nd being the National Day of Autism Awareness. Please take time this month to google autism and learn more about it and the effects it has on these children and their families.

In an effort to support and raise awareness, I have started "Rock Autism" Team, and will take my team to Richmond in the fall to participate in "walk now for Autism". My goal is to recruit 10 team members and to each raise 250 dollars for Autism Speaks. (Thank you to those of you who have already donated and support me for the walk)

You can view my website and learn more and also donate http://walknowforautism.org/richmond/rockautism

This month I will be posting different statistics and websites in an effort to educate the world about Autism, as well as share personal stories of our life with Autism.

If you would like a Autism Ribbon to wear for this month please leave me a comment and we will get you one. (Thanks Kristen for your help)

Most importantly....PRAY PRAY PRAY for the children with Autism and for their families, pray for strength, hope and perseverance!

Thursday, March 26, 2009

Our God Story through Epilepsy!

December 2, 2002 was an incredibly scary night for our family. Gabriel was 2 1/2 years old and woke up doing some pretty weird things until he went into full blown seizures and unconsciousness. We quickly called the ambulance...who came in grabbed him and worked on him on their way out the door to get him loaded up and to the nearest hospital. We were not aloud to ride with him, we followed behind and watched and prayed and cried as we could see them working diligently on him to get him to breath. Once we arrived at the hospital we were not permitted to go back with him...we entered one way and Gabe another way. Family and church pastors and friends quickly filled the hospital. We were not aloud to see him for hours and when we did he was hooked up to so many tubes and things keeping him alive. They had him so sedated that he could not breath on his own. Yet the seizures did not stop. They transferred him to another hospital with a better care unit for him. the seizures did not stop for 3 days and on the fourth day he woke up and pulled out the tube from his throat. I remember thinking that we would never hold him again or take him home...but God was faithful and Gabriel was Merle a vessel in God's greater plans! When Gabe was in the first hospital and we weren't aloud in...a lady was next door with her mom and when they let me back..she put her hand on my shoulder while i was in the hall and said when you weren't aloud back, we were sitting at his door praying for him. I knew that was God, reminding me to trust Him and to know God never leaves him. While family and friends visited us those 4 days they made new commitments to God and renewed old ones. If Gabriel was going through this so John's brother Phil could call out to God, then it was worth it to us and saddens us when he falls away. The weeks following getting home, we learned that a family in our marriage study for the first time stopped and prayed together, husband and wife, for the first time ever! The women were at church practicing for the Christmas Choir and at the exact time Gabe woke in the hospital...one of the women had a desire to stop and gather the women to pray for him! They didn't know and we didn't know they were praying for him! God works in all things!!!
The past 7 years since then, have not always been easy but man do we experience the grace and love an Joy of the Lord through Gabriel and his seizures. he is now on 2 seizures medicines and the neurologist has asked us to start a 3rd one, we are praying if that is the right answer. Some week's he is seizure free and some weeks they hit him hard and he losses speech and use of body parts..but the one thing Lennox Gastraut Syndrome can't take from Gabriel is his love for Jesus and his JOY in being in the presence of Jesus...he wants to pray and he wants to sing Blessed be your name..and he says "Jesus says fear not", and though he has just been through a seizure, he wants to go to church for devotions! If we all had faith and joy like that!

Gabe you are our HERO and we love you and you are the BRAVEST guy we know! Fight hard!

Supporting Epilepsy :)

National Purple Day

What is Lennox-Gastaut Syndrome?
Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually begin before 4 years of age. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods. Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning or information processing, along with developmental delays, and behavioral disturbances. Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In 30-35 percent of cases, no cause can be found. Developmental Delay

Most children with LGS experience some level of impaired intellectual functioning. Approximately two-thirds of children with LGS show signs of intellectual disability either before or at the time of diagnosis. Other children tend to show signs within a couple years of the onset of the seizures. Some causes of impairment may be the underlying condition causing the epilepsy, the sedative effects of the anti-epileptic medication, and the abnormal electrical activity of the brain from uncontrolled seizures.

Behavioral Disturbances

Behavioral issues include poor social skills and attention seeking behavior. This may be the result of the condition causing LGS, the effects of the medication, uncontrolled epilepsy, or difficulty with interpreting information and a lower level of understanding concepts.

Is there any treatment?
LGS is one of the most drug-resistant forms of childhood epilepsy. As a result, seizures are treated with anticonvulsant medication, however, complete seizure control is not always achieved. It is difficult to find the best dose and the type of medication, and some drugs lose their effectiveness. A combination of drugs are often used,

What is the prognosis?

The prognosis for individuals with Lennox-Gastaut syndrome varies. There is no cure for the disorder. Complete recovery, including freedom from seizures and normal development, is very unusual.

What research is being done?

The NINDS conducts and supports a broad program of basic and clinical research on epilepsy including Lennox-Gastaut syndrome. These studies are aimed at finding the causes of these disorders, improving the diagnosis, and developing new medications and other therapies.

Wednesday, March 25, 2009

National Purple Day

Tomorrow is National Purple Day. A 9 yearold girl started this event in order to make known about the wrold of Epilepsy and also so she could see and know that she wasn't alone in her daily life with Epilepsy. So please wear purple tomorrow, to support those who deal with Epilespy!

Epilepsy is a brain disorder in which people experience repeated seizures. According to the Epilepsy Foundation, more than 3 million people in the United States have experienced a seizure or been diagnosed with epilepsy. In fact, each year, approximately 200,000 Americans are diagnosed with epilepsy. Fortunately, in the majority of cases, the prognosis for most people is excellent. With appropriate treatment, up to 70 percent of people with epilepsy will become seizure-free.

A seizure is the result of a sudden disruption of orderly communication among nerve cells in the brain. This disruption causes different symptoms depending on the location of the seizure and how the abnormal disruption spreads. There are many types of seizures, with symptoms ranging from a tingling in a finger to the loss of consciousness, stiffened arms and legs, and bodily jerking experienced during a tonic-clonic seizure.

Tomorrow I will post about our families life with Epilepsy.


Perfect Weather for a Walk :)

The weather has been so nice this week..IT IS SPRING!!! The grass is getting green and the Dandilions are blooming. John has been getting off work at 4pm and getting home before 5pm, so him and the boys have been taking the dogs for long walks while I finish up dinner and get some quiet time to myself to refresh....Here are some pictures from their walk last night...this is at the top of the hill of our neighborhood track.

Thursday, March 19, 2009

Band Competition

Spencer got to perform last night in front of judges and against all the elementary school kids. I posted pictures below...he looked adorable and he was very confident in what he was doing! Today at school his band teacher announced that Spencer got a superior score and he will get a medal in May from the Virginia State. He was so proud! We are of him as well :) Great Job Spence!!!!!

"Superior" Performance

Cali Trip 3/09

Monday, March 16, 2009

Gabriel at school...

Here is Gabriel dressed up as a fireman :)

This was Abraham Lincolns bday celebration....hmmm...not looking too excitted about it!

Mrs. carol tells me that gabriel's class job is to help the teachers collect the laminated pieces they make...he looks very proud of himself!She says he is even washing his lunch plates in the sink with soap and all...great job Gabe!

here is Gabriel working at school on the computer

Saturday, March 14, 2009

Rain(Snow) or Shine...Your Mail is Always on Time!

I just think these are great photos...I am so blessed to have a husband who works so hard and allows me to be able to stay home with the kids! So while I was snowboarding with the kids...he was trucking through snow...yes he is a walking letter carrier....
At first he was like a kid at Christmas and was so excitted about it and just thought it was so beautiful..he loved the snow falling and his feet print being the only one in the snow....but by the end of the route he was wet and cold and the novelty began too wear off!
I asked him if the mailboxes were hard to open since it snowed and all..he said yes...they were all covered with snow and frozen...he had to pry them each open...made for a long day!
We missed you being home for snow day but I am so thankful for all you do :)

Sunday, March 1, 2009

Answered Prayers!

There as been snow in the focus for today for the past few days and I was such a skeptic..I just thought we are not going to get any this year...well this morning during devotions Pastor Tom prayed for snow and then Junior and Ms. Lorie have been praying for snow for weeks but today God answered their prayers and about 8:30 this evening John looked out the window cause the rain sounded so loud and sure enough it was snowing...He ran and woke the kids up and they were so excited! Junior called Ms. Lorie and she began to cry and she ran outside and it was really cool :) So now the kids are praying for a "Snow Day" off from school! I will keep you posted in the morning...It looks so pretty the grounds covered all in white....hopefully some snow will be left in the morning for Gabriel to see...we didn't wake him up...also pray for him and the snow...we have steep walk way and stairs to our porch that are very slippery!! Good night :)

Snowing :)