http://greensburgdailynews.com/local/x467321030/Pancake-breakfast-to-benefit-local-boy

Article in the North Vernon Plain Dealer
http://plaindealer-sun.com/main.asp?SectionID=3&SubSectionID=40&ArticleID=20110

Hope to see you all there.  Thank you so much to our Church Family we love you all so dearly.

Before I talk about the benefit I would like to share something really cool with you.  You will not believe what Daddy did for me last week, He signed me up for TEE BALL!!!!!!!!  Can you believe that!! I amso excited. I told Daddy that we had to get all my stuff, I want a blue helmet, and a blue glove and blue cleats, and a blue ball and a blue bat.  Daddy said he does not think I can allthose in blue but I told him, thats waht paint is for. 
It will so amazing to see ayden playing TEE Ball I think his Army willfollow to many of the games.  2 years ago we were told he would not be here and we no that competitive sports will not be an option as he grows up but for now we will really enjoy seeing him on the field. I don't know if his attention span is long enough but we are so proud of him and can wait to see him.  If by chance you are in Greensburg and see a little boy in all blue, that just might be Ayden.
 
Our Church Sardinia wanted to do something for our family.  They are conduction a Pancake Breakfast Benefit on Mar 24 at our Church.  Here are the details:

PANCAKE BREAKFAST BENEFIT

Come and enjoy as many pancakes and sausages as you can eat for a freewill offering to benefit the Billingsley’s! WHERE:      SARDINIA BAPTIST CHURCH                         12642 S State Road 3     Westport, IN WHEN:          SATURDAY, MARCH 24, 2012                         7 AM – 10 AM Ayden Billingsley is the 4-year old son of Shane & Becky Billingsley.  He is the young brother of Courtney, 15, and Oakley, 13.  Shane is a high school history teacher at the Jennings County High School and Becky baby sits children in their home in Westport. Ayden was diagnosed in January of 2010 with Mitochondrial Disease.  There are multiple symptoms of this disease including:

Mental & physical fatigue             Respiratory issues

Muscle soreness                              High liver enzymes

Lack of appetite                                                Growth issues

The family must make trips to Atlanta, GA to meet with the mitochondrial specialist. Treatment for Ayden’s illness requires many different medications.  These drugs are used to help him with his energy levels and to hold the nutrients in his cells. 

Find out more about Ayden and mitochondrial disease at his website aydenbillingsley.weebly.com .

WE LOOK FORWARD TO SEEING YOU THERE!!!
Thank you so much

We are in the process of planning a benefit for Ayden in late April.  Our hopes are to be able to not only help finance his trips to Atlanta, but we would really like to be able to add a room to our house so that Ayden could have his own bedroom.  A benefit would most definitely help with that.  Currently we are looking at putting together a Dinner and follow with a Dance/Concert.  We will have a silent Auction and a Basket Auction.  Any suggestion would be greatly appreciated.  Please give us your reccommendations!! Thanks and GOD Bless!!

Sitting in room 3016 at The Peyton Manning Children's Hospital on Sunday evening Ayden looks at me and says, "Daddy I want to go to my lovely home." We were all anxious and excited because earlier that day the doctors told us that we would be going home after a 5 day stay in the hospital.  In my last post I told you how Ayden was not feeling well and that he had Pneumonia and RSV.  On Wednesday the 22nd which happened to be my birthday I got a call from Becky that said that she did not feel Ayden was getting any better and was actually worse.  We called his pulmonologist and they wanted us to get him to the ER right away.  I left work and we took him to the ER in Greensburg.  His oxygen saturation at that point was 86, it shuold be above 96.  They started an IV to get him more fluids and put him on Oxygen.  St Vincents hospital in Indy was notified and he would be transported by ambulance to the hospital.  WE spent about 4 hours in Greensburg before heading to Indy.  Over the course of the next 5 days we were on a wild roller coaster ride.  The doctors kept telling us that they are treating the symptoms that Ayden has but there is no way to tell if they are due to Pneumonia and RSV or if it his Mitochondrial Disease kicking in.  We have been warned that any illness can have grave consequences for Ayden.  Each abnd every night Mommy "slept" in the bed with Ayden and I slept on the love seat in his room.  Mommy did not leave his side at all. I had to mae a couple trips back to pick up Courtney and Oakley so that they could see Ayden.  I cannot tell yu just how scared and nervous we were.  On Thursday evening the fever finally broke.  That was a great sign that maybe Ayden would be making a quick turnaround.  Each night while we were there Ayden would have a coughing attack and it sometimes lasted for hours.  It was so bad that we wanted to cry for him.  They were so violent and wet but nothing was coming up.  I just don't know how one little boy could cough so much.  As Ayden continued to improve our hopes of coming home soon also improved.  On Saturday morning the doctors came in and told us that we would probably be there until at least Monday and possibly as long as 2 weeks.  One of the treatments that Ayden was put through was called Therma Flow, this forces warm ain into the lungs and helps force open the tiny capillaries that may not open just on normal oxygen.  He also was getting around the clock breathing treatments, percussion therapy which means a lot of banging on his back and chest.  These would occur every 2 hours. Late Saturday afternoon after Ileft to Oakley back to Westport to get ready for his big junior high dance, Ayden was taken off of all oxygen and Therma Flow, his oxygen would nevr drop below 95 from that point on.  He was still coughing a little bit but he felt better.  When we aasked how he felt we always got the same snswer, "Not Good."  Becky called me and said that Ayden really wanted to see Daddy and I could ot wait to get back to see my baby, when I walked in the room he had the biggest smile on his face.  This was something that we had not seen in more than a week. If you have ever met or seen pics of Ayden you know that his smile can light up a room and melt a daddys heart.  It was so refreshing to see and it helped us to relax a little seeing his improvement.  On Sunday Ayden ate a very big breakfast his favorite food at the hospital was potatoe stars, they were tator tots shaped like stars and he had them for every meal.  I think he could have eaten 50 a meal if he could have gotten his hands on them.  If you know where we can find them please let me know.  After breakfast he had a terrible coughing fit and resulted in him throwing up a whole lot of potatoe stars but alos a great deal of Mucus and after the last bit came out it was like Magic.  He was a whole different person.  Getting all of that out of his system made him feel so much better.  By that afternoon the doctors did not see any reason to keep him there.  He was off all oxygen, no new medicine and was back to his normal levels of breathing treatments.  We were so relieved and excited but also scared.  I will forever remember sitting and looking out the window with Ayden and him saying , "Daddy I want to go to my lovely home."
I am amazed at the power of prayer.  Ayden had so many people praying for him.  Most of which were people that we have never met.  I want to thank each and every one of you.  To all the readers of this blog, all the workers in the Jennings County Schools, To all that follow any of my family on facebook, or twitter, to all of HOOSIER NATION, our family and friends thank you and GOD BLESS!!!  If you have been praying for Ayden and want to share please do so in the comment section. 

Asking for a lot or prayers!!  On Thursday Ayden came down with a really bad cough and was throwing up most of the day Friday.  After school on Friday we took him to the hospital.  They told us it was probably a virus that needed to run its course and sent us home.  On Saturday we had to take him back to get chest x rays becasue of the weezing that he had was making it a struggle to catch his breath.  The x rays came back normal but he was not getting any better. He was put on an antibiotic and was still running a temp between 101 and 104 throughout the weekend.  On Monday we went back to the hospital and they ran some more test and did another x ray on him.  He did test positive for RSV, Pneumonia and has a severe ear infection.  He has been put on another antibiotic and steroid.  As of this morning the fever still has not broken and his cough is terrible.  If the fever does not come down today he could be admitted to the hospital.  Please pray for him, he has been through so much and has been sick all winter.  Once he began going to school he has picked up everything possible.  needless to say that Becky and I have not slept since thursday, in fact the FAA would make me check  the bags under my eyes since they are too big for carry on.  In all seriousness for Ayden this is a dangerouse time.  To treat the symptoms the medicine used goes through the liver and Ayden always has had a high liver enzyme count, liver failure is one of the fears that we live with on a daily basis.  Patients with his disease also run a high risk of respiratory failure, so it is imperative that we get his lungs clear as soon as possible.  When he was first diagnosed with DNA Depletion we were told that something as simple as a cold could kick in his disease and we would lose him, so you can imagine how stressed and paranoid we are, so any thoughts and prayers are greatly appreciated.  Through everything that happens he still has a wonderful smile and is always positive.  We put all our trust in the lord and know that his will be done.  Thank you for all your support and prayers and I just wanted to update all of you on Ayden's condition.  Thank you and GOD BLess!!

It is amazing how some of the things that seem so small and so normal can be such a big deal to someone else.  The great news continues in our house.  About 2 weeks ago the doctors took me off of a medicine that I had been on for a long time.  It helps me with digesting food since my body does not make pancreatic enzymes. Since I have been off the medicine I am an eating machine!! I eat all the time and he is the really fun part I eat all by myself.  One of the things that most of you may not know is that I have a very high food adversion. Which means that I do not like to eat and when I do I am forced.  I have never really felt hungry and I would not eat on my own.  Mommy for many years has had to follow me around and distract me and do whatever she had to for me to eat. The doctors wanted to put in a feeding tube to make things easier for Mommy but she said no way.  It is her job to take care of me and she will do whatever she has to.  Thank yuo Mommy for loving me so much to take the time and effort to do that. I think that those days may be long gone.  I am now not just eating alot but I am doing most of it on my own. Something so small and trivial to most brings cheers and celebration and even tears in in our house!!
Thank you for reading my blog and thank you for your continued prayers,  May GOD bless you and your families!!