https://www.facebook.com/Mightmayson2009/ For those of you who know me, you know that my words always penetrate the heart.
My sweet, optimistic, adorable, red haired cutie is sick you guys. I’ve actually never had a kid as sick as he is in my years yet parenting.
For many of you who continue to know my sons battle and the stress and pain it has caused, but yet has blessed us.
On May 9th of this year Mayson was hit on his bicycle by a vehicle. In the accident Mayson suffered a brain aneurysm. Since then he has had the anyrsum pipelined and coiled. That was a lengthy process leading to the surgery. Mayson's VerifyNow blood work can only be done in certain areas which any of the labs for that test is 4 hours away from our home. These are very important labs to be done as Mayson's on blood thinners. And aspirin the rest of his life. He can't be a normal kid! It's absolutely heartbreaking. Because prior to this accident Mayson was a very active kid! I've been battling for the last 5 1/2 months with the drivers insurance.Until Mayson is finished with VerifyNow which is until February the drivers insurance won't start with a settlement...Even then they may not as Mayson's medical treatment for his anyrsum won't ever be over. This alone has added up to 250,000 his medical treatment for the anyrsum alone! Mayson qualified for WyMedicade in July as he went in for brain aneurysm surgery the day after his 9th birthday on the 29th of August. I'm so thankful he did get insurance because without that he could have died if he didn't have the surgery.
Here is how I feel so blessed that this happened.
During the MRI they found a mass on his brain and several lesions on his brain as well. As well as his heart and kidneys. During our first initial stay in Denver Children's he was diagnosed with Tuberous Sclerosis. The mass on the front ventricle part of his brain is a benine tumor called a SEGA. Mayson was beginning to have seizures as well. We are now starting the process with the plan of care for Mayson's Tuberous Sclerosis. Oct and November will be very busy as now we get to find out the severity of his Tuberous Sclerosis. Mayson has been going under MRI'S from 1 time a month to now every 3 month's. He has done genetics testing. He has EEG's done every month to monitor his seizure activity. He also see's a neurologist, neuro-oncology, neuro surgeon, stroke clinic and Phycial therapist. It takes up to a year to get into the TS clinic. They accept 8 patients every month for the TS clinic in Colorado.
Since the accident our family has been in such a financial bind as the closest Children's Hospital is in Colorado,Utah,and MT which each one is 4 hours away from here. Multiple trips and MRIS there in Colorado.
We lost our home, my only vehicle was repoed,food banks have been a constant. It's been impossible to keep afloat. Had to leave my job in order to care for Mayson. Jeremy's checks started to be garnished for a debt and on top of his child support became low. And the both of us have now learned to make sure we save for unexpected accidents or emergency funds. As Jeremy and I are the only parentsMayson has and the both of us will be there for him and support him as parents. So with the Foundation that has been helping with some medical expenses and verifies everything with the Doctors and verifies all income as well all the reimbursement has went to what essentials and things such as electricity and gas and other bills. I can tell you this that without Jason's Friends, Brent's Place and some of the people in our community and their warm hearts,love and their generosity I wouldn't have any idea where we would be. It is still a constant battle to keep going, but yet stay strong for Mayson and his siblings while the walls are crumbling down behind them. Yes there was a fundraiser in May that earned $1200. Jeremy did not work for 3 weeks of that month due to Mayson's medical condition then as we didn't know if Mayson was going to be ok or not. The scariest thing for a parent to have to go through. On July 3rd our awesome community had a benefit concert for Mayson at Metro. The band 10 four 10 is now definitely his biggest stars besides his family and doctors! We took 150 of it for gas for his upcoming appointment that week in July and put the rest in a bond account. Here to Help Foundation of Wyoming set up a fundraiser for Mayson as well that will be going to a bill issued by them to what bill is decided. Mayson is being granted Make A Wish by Make A Wish in Wyoming. He is wishing for Universal Studios in Florida. These types of situations are far from easy or to face reality but yet a blessing too!
Mayson has now started 1/2 days of school with a very mortified IEP. Mayson doesn't get to go to recess or play in PE as he has to have a adaptive curriculum due to any bump of his head could cause a significant brain bleed or life threatening injuries. This will go on till the beginning of February, as he will be going back and forth every month for the blood work alone. Need to always make sure his blood thinner level isn't to high or ro low.
With pride yet again, I come with shame to ask for any help at all.As I'm told don't worry what anyone says you sincerely need the help and you are in with your recourses. I am doing my best as a parent in this situation. And tapping into what has been given, as Wyo Med can help with some travel reimbursements after it's been approved. In the meantime with the help we have received and with the waiting process of the waivers, disabilty,ssi, and the drivers insurance this battle is gonna keep going. Let alone know what the next day will bring to us with his TS. Every day is a new day with Mayson. I'm hoping in November to have answers to Mayson hopefully able to go to school a full day as well as the Wyoming Waiver to be approved by the state for Mayson to have health care to work with him up to 8 hours a day in order to return to full time work. So finances are very very fierce. I need to get a reliable vehicle to travel back and forth to Denver Children's. Stalk up on the freezer on food,get them a Christmas present,pay Bill's and get winter coats for the kids,pay on constant incoming Bill's.https://www.facebook.com/Mightmayson2009/ You can follow Mayson's Journey on Facebook called . "Mayson's Journey with Tuberous Sclerosis"
Thank you for all of your help and most of all thank you for reading Mayson's and our Journey.