Help get Shon a wagon and saftey bed
Donation protected
Hey there, my name is Amanda and I am the mother to 22 month old warrior named La'Shon. He has been just diagnosed with a brain tumor in the left parietal lobe, Myelination delay, focal cortical dysplasia, Dysphasia, chronic lung disease, reactive airway disease, sensory processing disorder and is currently at the top of the wait list for an autism evaluation. White brain matter was also found in this MRI. It is unclear if the tumor is cancer as a biopsy is not in his favor at this time. He is being closey monitored by Rileys Childrens Hospital by a oncologist and neurosurgeon specialized in cancer of the brain in children. From just a tiny egg La'Shon started fighting for his life. Conquering interuterine growth restriction he was born at 36 weeks 5 days at 5lbs even. In the first 24 hours of life LaShon quickly dropped in weight and and immediate intervention was needed to release a Tongue tie. The first 3 weeks after started out normal. His weight picked up and he was happy as can be. At 3 weeks old his first seizure happened. A work up was done and everything came back normal expect a large amount if fluid inside the inner ear. We then discovered he could no longer hear us. Surgery was done to remove the fluid, tubes where placed to prevent further hearning damage. By the grace of god most of his hearing was restored. More seizures followed and left doctors confused on what was happening. He then started to become very ill more frequently with lung infections. We where referred to a pulmonary doctor who ordered a swallow study. It was found in the swallow study that he was aspirationing on thin liquids causing the lungs infections and damage. He was placed on honey thickened liquids and food was stopped immediately. With more lung infections a feeding tube had to be placed. Being 12 months old at this time he needed nutrition supplements to meet his calorie goal. Despite everything this little guy started to thrive. The feeding tube wasn't needed and he worked hard weekly with speech therapy to get down to a slightly thick liquid and eat food again! He is still currently on this diet. Unable to progress further. He was referred to rileys aerodigestive clinc where a tripple scope was preformed. Everything came came normal except fining morexella in his lungs. This left rileys concerned because it didnt explain the feeding issue. His pulmonary doctor decided to test him for a rare disease only to find the tumor and other deformation of the brain. We are raising money to get LaShon a wagon for his hospital trips. Being that we are over 3 hours away from the hospital we must see all his providers in one day to prevent multiple trips. Being this we have multiple lay overs of time as doctors have busy schedules and cannot usually see him back to back. The wagon would provide him a safe environment to play in along with taking out the seats he would have a place to nap in. We are also raising money to custom make Shon a saftey bed until insurance will pay for the $6000-$10000. Due to his sensory issues LaShon resorts to violent tantrums when he cannot communicate. He will bash his head into walls and the ground. When he is sensory seaking he tends to hit, bite, and throw things at others. When he is in a state like this having a safe place is critical. He is too strong for a pack and play it will tip over and a crib is unsafe because of the hard surface. He must sleep with me so I can feel him get up. Whitch leaves me with many sleepless nights. Any funds left over will directly be used for gas money to and from his treatments and test, and bills from being off of work to care for LaShon. If you would like to purchase any of these items directly or any item off of LaShons wish list please contact me directly.
Organizer
Amanda Smith
Organizer
South Bend, IN