Still Here By the Grace of God
Post date: Oct 9, 2009 11:18:23 PM
Monday, September 7, 2009
Friday September 5, 2008, at 5:30pm, I remember it like it was yesterday I was in the AM850 News Studio preparing for the Cheep Seats show when the telephone rang. On the other end of the line was my wife Patrice telling me that she had just received a phone call from Dr. Michele Lossius, stating that we had missed some of Joshua’s appointments and inquiring if all was well? That day was the beginning of a new life of a new direction of a new chapter walking with God. Patrice told me that evening that Joshua Joel Fletcher was diagnosed with Spinal Muscular Atrophy (SMA). I sat in the lobby after I got off the phone and asked myself how in heavens name I would be able to do a talk show. I began to pray and praise God in search of the strength to go forward and complete my task for the day. During the next year of our life they have been many ups, many downs, many prayers, and many miracles. But today a year later Joshua is still maintaining and getting ready with the grace of God to receive total restoration of his body. Joshua has grown to love Ni-Hao Kai-lan, Backyardigans, The Wonder Pets, Dora the Explorer, Blue’s Clues, Wow! Wow! Wubbzy! Yo Gabba Gabba, Go Diego Go!, and Jack’s Big Music Show. Let’s just say Noggin is the channel of choice when Joshua is home. Patrice and I would like to say Thanks to everyone that has lifted us up in prayer and has support us. We would like to Thank the Harvest Time Ministries International prayer line, Gainesville Area Chamber of Commerce, Tabernacle of Praise and Restoration Outreach Center, Generation Outreach, Florida Central Second Ecclesiastical Jurisdiction, and Grandma for all they have done for us. We would like to send a special Thank You to Christ's Starfish Foundation and Carldon Lahey for helping us with the purchase of a minivan that we can take Joshua to church with all his medical equipments and to take him out and about. To every Doctor and nurse that has been involved in this process especially every single nurse from Maxim Healthcare that has come into our home to help us take care of Joshua, and Prescribed Pediatric Extended Care (PPEC) for taking care of him at daycare Thanks. And to the only true and living God as in Psalm 116(17) I will offer to thee the sacrifice of thanksgiving, and will call upon the name of the LORD.
Posted by ian.r.fletcher at 10:26 PM
Hello everyone it has been a while since the last post to the blog, but yet there are so much I would like to touch on. For the time being I must tell you that once again Joshua has a double ear infection this time he is on medication for three weeks, we are praying that this will stop this infection from returning. We tend to sometimes forget about the fact that kids tends to have a lot of ear infection so I do not believe that this is because of SMA Joshua is still a baby and getting sick is what babies do sometimes. The difference is with Joshua it can be a worse case scenario and we must be careful at all times especially with the swing flu on the rise. Last week while traveling to school Joshua ventilator became detached. But God was in control the entire time Joshua was able to breathe on his own until he reached school and it was determined what portion of the machine was detached. The bible tells us the God will supply all of our needs and it was the miracle of God that supplied the strength for Joshua to breathe on his own without help.
Posted by ian.r.fletcher at 10:24 PM
Wednesday, June 10, 2009
Joshua had a very eventful weekend. His grandmother came to visit him, his sister Julia had a dance recital performing in 9 dances. Joshua did not make it to the dance recital though he attended her dance recital in Lakeland Florida. We are a traveling hospital, having to take all his equipment with us when we travel (e.g., ventilator, suction machine, oxygen tank, feeding machine, etc...). We currently do not have a large enough vehicle to travel with Joshua around Gainesville. On Sunday Joshua oxygen saturation desat to 67, but bounced back after he was suctioned and given oxygen. His heart rate has been dropping below 70 beats a minute which has become a cause for concern, because the heart muscle is normally the last thing to go. We have received many prophecies from many believers that Joshua will walk and not have to rely on the breathing machine. We are strong believers of faith and do not believe Gods words return void to him. September 30, 2009 the PICU Doctor's took us into a room and informed us that babies who come in with SMA diagnosis once placed on life support they are unable to survive without ventilation help. The Doctors told us that we had to make some quality of life decisions about Joshua. They informed us that some parents have signed a do not resuscitate order. The Doctor’s informed us that we would have to Trach Joshua and that he did not have long to live. After research we found the best respiratory care for Joshua that Doctor’s at Shands and Arnold Palmer Children Hospital refused to follow. But today I can say God is a great God because this day Joshua Joel Fletcher will celebrate his first birthday something we were told would never happen by Doctors. I would like to thank all the people around the world that has said a prayer for Joshua because this is proof that God hears and answers prayer. The battle for life never ends, Tuesday Joshua was diagnose with an ear infection, but that will not stop us from giving God Praise because Joshua’s SMA journey one that many Doctors said would end early is a celebration of Life, many babies with SMA type 1 do not live to see their first birthday. God Bless and Thank you all, your prayers have kept us and last but not least; this day June 10, 2009 is a very special day, HAPPY BIRTHDAY JOSHUA.
Welcome to SMA #1 Genetic baby killer Joshua's journey. My name is Ian Fletcher Joshua's father and my family and I have been on the roller coaster of life since Joshua was diagnosed with SMA. SMA stands for Spinal Muscular Atrophy. SMA is a motor neuron disease that affects the voluntary muscles that causes children with this disease to not control their neck, move their hands, and leges. Children with SMA are not paralyze they have feeling throughout their body. Joshua's Journey has been uplifting at times and also depressing. We are in the process of starting the Joshua Joel SMA Life Foundaton to benefit the education of the medical community about this deadly disease. When Joshua was diagnosed it was amazing that we lived in Gainesville Florida with Shands at the University of Florida in our backyard and only one doctor knew about this disease. Many Nurses, Respiratory Specialist, Occupational and Speech Therapist, Nutritionist, and Doctors have never heard about this disease.
Currently H.R. 2149/S. 1158, the "SMA Treatment Acceleration Act of 2009" has been introduce to the 111th Congress. There is a nationwide call to action for signitures so please sign the petition to cure SMA.
This blog will be about Joshua's Journey daily with the progression of SMA in his body and the treatment he receives. As I am writing this blog Joshua's oxygen saturation dropped (desat) to 67. He was given oxygen to bring him back to normal saturation. As one Doctor explains it to us, every time Joshua desat he is attempting to die. I do not intend for this blog to be a horror story like many about this disease. It will be an enlighting journey not some Jon & Kate reality disaster.
Posted by ian.r.fletcher at 11:59 PM