Savion's Smile!

There has been so much happening in our lives and so many have been touched by Savion, his story, and his resilience!! Brian J. Kelley, has produced and released an instrumental song titled "Savion's Smile"! We are truly honored and blessed for this!! I told you that smile of the Prince is sooooo infectious!! You can purchase a copy of this song on itunes or amazon.com. This song is truly uplifting, and you can not help but to smile as you listen to it! The first time Savion heard the song, he actually started to bounce to it! So I know if he enjoyed it, you will too!! Thank you for supporting such an awesome cause!!
BUY YOUR COPY OF SAVION'S SMILE HERE!!

Smiles 4 Savion Benefit was a true success! It was amazing! So many people came out to support Smiles 4 Savion! There were some fantastic gifts and baskets won!!! The love and support that everyone showed us truly still has me speechless! To think that Savion, who has never spoken a word since he was about 11 months old, could have such an impact on so many just warms my heart! it makes you truly appreciate the little things in life, His infectious smile has impacted so many! He truly is my hero and is a warrior!! He continues to amaze us!! We are excited to see all of what God has in store for him, and can not wait for Savion himself, to share his testimony!!! Never Giving up Hope and Never Losing Faith!!!

I'm talking on the phone, handling some very important business!!

Savion took some amazing shots thanks to Patrick Rodio! Check out some of his work!
http://www.facebook.com/messages/1524741863#!/PJRPhoto

SAVION HAS BEEN SEIZURE FREE FOR TWO MONTHS!!

So it's been a while but there is so much to tell! On Tuesday, Savion went in for an overnight EEG, and for the first time in a very long time, he actually slept through the night!! (Go figure LOL) Anyway, the EEG shower NO HYPPS! That is a tremendous deal! YOU see it was those nasty hypps, or chaotic brain patterns, that caused Savion's brain to be disorganized and chaotic! While in the hospital, I did think that I saw Savion have a spasm, however, the EEG didn't show that it was one, and when it happened he was tangled in a bunch of cords from the EEG probes. So with that said, SAVION HAS BEEN SEIZURE FREE FOR TWO MONTHS!!! He continues to amaze us with his infectious smile. He is laughing more playing more and even beginning to walk more steadily. He also has gained some advancements in his receptive language ability. When I tell him to come here, he DOES!! I told him to pick up his cup the other night from the floor, and HE DID!!! SO please continue to pray for him they are truly needed!!

ONE MONTH SEIZURE FREE!!!!!

This has been sort of a miracle and a nightmare all at once. We have had to make so many horrifying decisions, that most parents do not even think about making nor should have to, but the testimony I am giving today, makes every decision, every experience all worth it! More importantly, we believe, matter fact, I know God has been with us every step of the way! Without God, none of this would be possible, and my sweet little boy, would still be suffering, and maybe not even still here with us today! Anyway, I am elated to report that Savion has been SEIZURE FREE FOR ONE MONTH!!As scary as surgery was, it was all worth it. In fact, the seizures that Savion had prior to surgery were becoming more stronger, frequent, intense, and longer. Even after surgery, he had some seizures. They were so bad that he would cry during them! As strong as I was, I was horrified knowing that surgery was really our last option, as Savion had tried almost all medicines and the diet known to have success with Infantile Spasms. Savion's neurologist, although she tried to remain professional, was fearful as well. I could hear the urgency and clinging of last hope that she held onto for surgery. You see, without surgery, and if Savion's seizures continued the way they were, his life expectancy and/or quality of life didn't look that great. However, today I am happy to report and can't say it enough that we are celebrating one month of freedom from seizures. We are celebrating one month of witnessing Savion's smiles every single day! I know God is real and He always shows up right on time! Please take a minute and thank God for what He has done for Savion! This past month has been the best month of not only my life, but Savion's as well! He is not hitting his head when seizures suddenly come. He is not falling over! Matter fact, he is walking better than he has since he started walking! He is interacting more with us! He is laughing, playing, and most of all focusing on things longer than he ever has! He is even looking at and seeking out objects that have the tiniest details. Now, you know the devil is always busy and tries to give us doubt, so my fight continues everyday to rebuke him! I am not quite there, where I am sleeping peacefully, since I am watching Savion's every move, wondering if he is about to have a seizure. Every time he salivates, I immediately get caught up wondering if a nasty seizure is coming. Every time, Savion gets quiet, I am staring at him, fearfully wondering if he is about to have a seizure! I drive the girls crazy, I am constantly asking them, did y'all see Savion have any seizures? BUT the devil is a liar! I have to just stand firm on GOD'S WORD and PRAY! This is a fear we will live with, because his EEG will probably always show a little abnormal activity in the left area, that the surgeon didn't remove because it wasn't safe to remove. We still won't know how much of his eyesight has been compromised as a result of surgery. No, Savion's EEG doesn't look like most kids his age. Yes, he is developmentally delayed, some of his skills are as low as a 7 month old baby. But GOD, we have seen HIS MIRACLES, and I can testify to all HE has done for SAVION! I have FAITH and HOPE that HE isn't finished with Savion yet!! All we can do is take one day at a time, especially since we have been living with this horrible disease for most of Savion's life. And while this horrible catastrophic disease will probably haunt us for a very long time to come, we still put all of our TRUST in GOD. I've heard him say to me, Peace be still!! Although Savion has a long way to go, I trust that the wonderful angels and prayer warriors that God has placed in our lives, will continue to encamp and surround Savion and scream and pray for victory over this dreadful disease, will continue to pray for healing, and healthy and normal development, and will pray for the gift of speech! Savion is trying hard everyday to communicate with us, and we are thankful and praise GOD for just that! We are confident Savion is beginning to sign "EAT"! We serve a mighty God and continue to look in amazement and wonder at all He does for our sweet little Prince! Savion is a fighter! HE is one brave little boy! I am honored to be his mother, and humble and happy that God chose me! Please continue to keep praying for Savion! MUCH LOVE!!!

Savion continues to make inch stones. He seems to be balancing himself better as he walks. He is still not sleeping well which isn't good for mommy! We visited his medical daycare last week. Savion seemed to really love it there. He actually let one of the nurses wipe his nose without a fuss! We are anxious and excited as we visit the neurosurgeon tomorrow for his post-op surgery!! SO please keep us in your prayers! Savion is starting to display his emotions, which is a good thing and a bad thing (for us)! When he gets angry, he will hit or knock his head against us. However, when he wants more and is happy he will tap himself and smile!

Here are the latest pictures of Savion smiling and laughing! Of course, it was at 1:30 in the morning, but I will take it! We still have a long journey ahead, but his smile is priceless. We are praying that his brain is resetting itself and that the right side of his brain, has speech stored in there somewhere! Oh how I long for Savion to call me Mommy!!! But we are celebrating the inch stones that he has taken! Last night was a better sleep night for him! He actually slept for 4 hours straight!!!

Seizure Free 15 Days and Counting!!!

Prince Savion has been seizure free since January 10, 2011!!!! We are so elated to share this news! We are praying he remains seizure free! Savion still has to remain on the various medications and diet, but we are faithful that we are on the road to recovery! Since January 10th, Savion has filled our home and hearts with laughter! No, he may not be talking yet, but we are NEVER GIVING UP HOPE AND NEVER LOSING FAITH!!

Savion's Story:

Savion Jadon Wesley is a 2 ½ years old born on April 15, 2009. He was a healthy 8 lbs. beautiful baby boy.  Every checkup for the first 10 months of his life was always great news.  He appeared to be developing well. He hit all of his milestones ahead of schedule.  Savion even said words such as “hi”, “bye”, “dada”, “mama”, and “no” as early as 7 months.  Things somehow took a turn. Savion began to have startled like movements or spasms. Fortunately, the pediatrician finally took heed to Savion’s mother’s intuition that something was wrong.  An EEG was scheduled showing slightly abnormal brain activity and in March 2010, he was diagnosed with infantile spasms.  In the time he was set to await follow up with a neurologist through his pediatrician, Savion went from a bubbly baby to emotionless. Because there was a 3 month wait for the neurology clinic, the family sought other resources.  The Children’s Hospital of Pennsylvania (CHOP) were more expedient in getting Savion scheduled for the neurology clinic as quickly as the very next day from the initial call.  Savion was admitted for an overnight EEG on March 25, 2010, just a few weeks shy of his first birthday. 

He was immediately sent for an MRI, which showed that portions of his left temporal lobe had never fully formed with no scientific reasoning to explain. Just as quickly as he was diagnosed with this disease, it seemed as if Savion stopped clapping, talking, and understanding those around him.  Life began to fade from his eyes and his SMILE began to vanish.  Savion was having at least 40-50 seizures or spasms a day that were seen to the human eye.

Countless medications were tried on Savion.  The first treatment was a B6 shot, immediately given to him in the hospital, which unfortunately did not work. During his stay at CHOP, they began treatment with a medication, known as ACTH, which for one tiny vial cost over $30,000!!! His mother was trained on how to give these injections to him in his muscle.  Savion was on this aggressive steroid for about 4 months.  Along with injecting this medication into him several times a day, his glucose required checks as well as, his urine and stool for blood. This drug not only had the ability of causing some major organ damage, it caused Savion to gain a lot of weight, and unfortunately it also weakened his immune system.  Savion, was not able to experience a 1^st Birthday celebration as his other siblings had once experienced  because he couldn’t be around other children.

During this time, it initially appeared that the medication was working. Savion began laughing and SMILING again. He began shaking his head “no” and “yes”. However, this is a drug was known to cause damage to the kidneys, liver, and have other serious irreversible effects. What the family thought was their miracle drug, was not, Savion’s spasms began to reappear.  As a result, Savion was slowly weaned off of that medication and was placed on Sabril on July 21, 2010, which at the time, was not even available in the United States. It was explained that he may lose some of his vision from this drug, and it would not return, even after he was weaned off.  With this drug, came monthly visits to the pediatric ophthalmologist. After being on this medication for some time, Savion had another EEG, and it showed the hypsarrhythmia and spasms were basically gone. The family was again excited and Savion continued making progress. His neurologist informed that although his EEG looked almost normal, she would present him to the surgical board in November as a possible candidate for surgery.   He began making inch-stones playing peek-a-boo and such. However, 2 months later another EEG showed devastating results, the spasms had come back! His dosage was increased and other medications were prescribed which also had concerning side effects.   Savion was eventually taken off of Sabril, because the seizures began to increase, but he still remained on the Topamax and Depakote prescribed. As a next step, Savion had to begin taking Keppra, another anti-seizure medication. It became evident in a few short weeks, these medications were not working.  Savion’s development was rapidly decreasing. And once again he lost his SMILE!

On July 5, 2011, Savion was admitted to CHOP to be placed on the Ketogenic Diet. This was a last attempt before surgery.  In fact, during his stay for the ketogenic diet the results of the MRI and EEG scan were in. The portion of the brain did not develop any further, and if the diet was ineefective surgery would be the next option.  Savion was admitted to CHOP for a week, where he was monitored because his body needed to be in ketosis. This diet has been a miracle cure to many who are diagnosed with many forms of Childhood Epilepsy. He had slight problems with his CO2 intake, and had to be placed on a Bi-Carbonate to help regulate. So as of July 5, 2011, Savion’s seizures were being controlled by the Ketogenic diet, and three different seizure medications. In addition, Savion has to take a daily vitamin since this diet contained very little carbs and nutrients. And he remains on two other medications prescribed to deter the side effects that can occur because of the diet and medication combination.

Prior to his stay in the hospital for the diet, Savion’s physical seizures were occurring anywhere from 20- 40 times a day. While in the hospital, Savion's seizures went quickly to about 11 a day on the first two days of the diet, to 4 or 5 by the time he was discharged. The diet was working!  Although this diet was very hard to follow, his mother fought relentlessly for the SMILE that was lost.  His mother was now responsible to measure out his food to the tenth of a gram, administer his medications,  check his glucose levels 3 times a day, check his urine for blood, ketones, and PH levels, and test his blood for Ketone levels.   In addition it was still pertinent that he be taught all the things he had lost by incorporating OT, PT, and Developmental Therapy.

A month after the diet, Savion had an EEG, which showed very little improvement, but the neurologist thought that it may have been too early to see a positive change in his EEG. In November, at the same time Savion was presented to the surgical board, another EEG showed that there was still no change in his abnormal and chaotic brain waves pattern. As a result, surgery was underway.  Savion had his surgery Wednesday, January 4, 2012. Savion was in surgery for a little over 5 hours! During the first few days after surgery, Savion slept most of the days! He was in such pain, but surprisingly he only needed pain medication administered to him twice.  After surgery, Savion’s seizures decreased from about 20 a day to about 2-3. On January  10, 2012, Savion had no seizures at all!!! We are praying that he remains seizure free!  Savion is still on the diet and taking medications, because the doctors need everything to remain stable as the brain heals itself, and prayerfully resets itself.