HOPE 4 Tyler
Tyler's journey into this world has been a tough one. He was born via emergency c-section at 26 weeks weighing 1 lb 8 oz. While the odds were against him, he has proven to be the strongest boy I know, beating all the odds against him.
The first few weeks were hard but he was slowly making progress in the right direction taking a couple steps backward to only take a few more forward. Until March 2nd everything took a turn for the worse. Tyler suddenly got very ill and had developed Necrotizing Enterocolitis. He was vomiting blood and fading fast, His only hope was to be transfered to the Childrens hospital. The doctors informed us he was so sick there was a good chance he wouldnt even make the trip there. Tyler once again beat the odds and made it safe to childrens hospital but wasnt out of danger yet.
On March 10th Tyler was rushed to surgery where the surgeons found Tylers bowels had perferated. He was too sick and not tolerating the surgery so they had to close without examining this lower bowels which were red, inflammed and matted together. We were told our son was the sickest baby on the unit.
Tylers recovery was hard but he kept pushing on. The doctors again informed us that we are not in the clear yet, They told us he could end up with short bowel syndrome or even worse not be compatable with life if the remainder of his bowels had died. The future was uncertain but we kept hope.
His next big surgery was June 8th and the plan was to reconnect his bowels and see how much they could salvage. The surgery itself went amazing. He only lost 2 cm of bowel and everything looked great. We thought the worst was over.
Tyler wasnt recovering as expected. His blood pressure plummeted and he went into shock. It took three hours to stabalize him. During that time Tylers kidneys and brain took a huge hit.
On June 22nd we got devistating news that Tylers MRI showed extensive brain damage. Tyler had Hypoxic Ischemic Encephalopathy. We sat with a team of doctors who painted a grim outlook for our son. While the blow was hard, we knew our son has overcome so much that no one thought he would, so we choose to keep hope.
Tyler was finally released from the NICU on June 26th after 161 days in the NICU. We got him started in PT, OT and vision therapy and life was looking up. He was diagnosed with cortical visual imparment in July and we were still managing his high blood pressure, a result from his kidney damage, we were able to have his g-tube removed and things were coming together.
Tyler was developing slowly but on track until in october when he began having seizures. He was diagnosed with Infantile spasms which is a devistating form of epilepsy that causes brain damage.
As you can see Tylers journey has been a hard one. Our lives have been a whirlwind of questions, hospital trips and stays, tears but also HOPE. Tyler amazes us everyday. He is a happy little boy with so much potential.
HOPE has pushed us to look at all the treatments available to Tyler. With all these great treatments comes extensive bills which has brought us here. The long term cost of care and treatments will be immense but we will do whatever is possible to give Tyler the best life possible.
We are taking Tyler to Doctor Roman in PA who is renowed for her work in CVI . She can help assist us with improving Tylers vision and helping him make sense of what he is seeing. Insurance doesnt cover this trip or the equipment we need to better his sight. We are looking to purchase a light box ($1,312) and light aid ($999) which will help Tyler with visual tracking, visual attention, cause and effect and sequencing. These are tools that will grow with Tyler as he gets older.
We have taken Tyler to private movement lessons (Anat Baniel Method ) and have seen wonderful results. Tyler gains a better sense of himself and how he moves and is more self aware. These lessons are not covered by insurance and are done one week per month with 6-10 lessons that week. Each lesson is $80 so that adds up quickly. We are eager to continue his progress and he gets more benefit from his ABM lessons then his insurance paid physical therapies.
We have also started Tyler on an off label seizure medication that our insurance wont cover. It is working and Tyler has been one month seizure free! We have contacted a group that helps parents in our situation and they have agreed to cover 50% of the cost but that still leaves $300 monthly OOP.
All these therapies, equipment and medication help Tylers brain recover (brain plasticity) and help Tyler become his best. We can't make this happen without the support of the people who love us.
Tyler's first Birthday is January 18th. In lieu of a birthday gift, please consider donating to something he truly needs.
Please consider making a donation or praying for us and our little Prince.
We also have a PayPal account set up for Tyler if you wish to donate that way. If you choose to use paypal, please let us know if it is okay to use your name when we add your "offline donation" here. Thank you for helping Tyler!
www.paypal.me/hope4tyler
Check out this video of Tylers NICU stay!
