Tuesday, September 30, 2014
I Woke Up RICH This Morning..
How many people can say that they woke up filthy stinking rich out of the blue one morning? Well, I can, at least that's what I am told.
My youngest has many medical issues. Visiting doctors is a hobby of ours. We are always visiting a doctor. She was diagnosed with jaundice at her 3 day check up. She was jaundice at birth but her levels continued to rise after she was discharged. She spent her first weekend at home on a bili light. No biggie, all of my kids were jaundice and there was a quick fix. At her next appointment she wasn't eating. (This was the following week) I was forcing an ounce down her every 4 hours and she was spitting up 6 ounces for every ounce I got in her. Well, it seemed like it was that much. She lost over a pound so I know she wasn't eating nearly enough. That was the day that we became a CHD family. Her doctor, who happened to be a pediatric cardiologist, heard a murmur and performed an echo that day. She had 2 congenital heart defects. A PDA and an ASD. They happen to be the best heart defects to have. They were so small that they didn't have a horrible impact on her daily life. Her immune system wasn't the best in the world because her body was fighting the heart defects. (That's how her cardiologist explained it) We planned to repair them around 18-24 months and went about our lives normally waiting for the big day. This was just the beginning. Months and months of illness, fevers, seizures, hospital visits, and medications began. She was always sick or in the hospital. She always had a cold and snotty nose. She would get red skin blotches every single time she ate. I lost it so many times when she would eat in public and people would ask what was wrong with her. I had my fill of it one day when a man asked me that. Before I could think I popped off "What the fuck is wrong with your grown ass? Get some manners douche." Not my proudest or most even tempered moment. I had reached my limit. I was stressed to the max and no matter how hard we looked there were no answers. I told my husband it was getting to the point that I was scared to call the doctor's office. We see stories of parents with Munchausen by Proxy and I was terrified that they would dismiss her issues and say that I had MBP. It was not uncommon for us to be at the pediatrician's office multiple times in a week. She was labeled as high risk and her chart was thicker than everyone else's combined.
The worst and most memorable day was the first seizure. Thank God we were in the doctor's office. Once again she had a fever. We were called to the back after waiting for hours..no exaggeration..literally 4 hours in the waiting room. I fed her a bottle and then she kind of spaced out. She was limp and just laying in my arms, not responding to me. She started to twitch a little and I ran into the hall yelling for a nurse or doctor. One came and took her and told another to get a doctor. Within seconds we had 3 nurses and 2 doctors in the room. She was blue and shaking. I was hysterical. I just knew I wouldn't be leaving with her. One doctor said to get a crash cart and call an ambulanace. The other yelled for medicine. A nurse hooked her to a pulse ox monitor. Another nurse came back to say they didn't have the meds the doctor ordered and she yelled at her to get whatever they had. The other doctor was trying to talk to me and was telling me her O2 levels were high enough to keep her alive, that she was blue but it was ok and not to be upset. Umm..yeah right..I'll just calm down. The doctor gave her medicine and said she was having a seizure. The first dose didn't stop it so she was given a second dose. She stopped shaking and was laying there unresponsive and grunting. She finally turned pink again and her O2 levels rose. The ambulance finally arrived and when we got to the ER her temperature was 104. The doctor actually left an office full of patients to come to the ER with us. She had a head CT and it was determined she had a febrile seizure. The good thing: febrile seizures do not cause brain damage, they basically reset the body. The bad thing: I was now a permanent wreck and have been extremely paranoid every time I hear a sneeze. My mind knows they can't harm her but no parent can think rationally in the middle of a seizure.
I am actually thankful for that seizure. That seizure resulted in us finding her current doctor. After months and months of me saying something is wrong someone finally listened. We moved to his office and the fun filled life of specialists began. Her doctors include: pediatrician, pediatric cardiologist, cardiac thoracic surgeon, geneticist, ophthalmologist, pediatric endocrinologist, asthma and allergy center, physical therapy, speech therapy, occupational therapy, and yearly kidney scans. It's a lot.
Just before she turned 1 she was diagnosed with Sotos Syndrome. This is a rare genetic condition that causes many issues, the most noticeable is excessive growth. She is 2 and is the same size as her 6 year old brother. She learned to sit up and crawl around her first birthday with the help of a wonderful physical therapist. It's been a long road.
A few months ago she was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified. She has mega meltdowns and hurts herself. It was at this point I decided to apply for disability on her behalf. We have medical bills out the butt and I was hopeful that this would help her. I was shocked when they found her disabled. I'm told that it normally takes several appeals for them to actually acknowledge that a person is disabled. The only other hurdle - passing the income qualifications. I wasn't aware but when children are classified as disabled they do not receive any assistance if parental income is over a certain amount. Well, guess what..according to the Social Security Administration I am wealthy! I wish I had known that before!! She gets nothing..no help at all. Thanks for having my back government.
Now I am beyond pissed. Why do people that choose to be unemployed get handed housing vouchers, food stamps, Medicaid, TANIF, SSI, and 100 other programs? It's easy for people to say go get a job to cover her doctor's bills. I tried that. It lasted 2 days. It was 2 days filled with her having a meltdown from the time I left her until I picked her up. 2 days of her throwing up constantly from crying so much. Children on the autistic spectrum can not process change like we can. Me leaving her at daycare having a fit is not the same as leaving another child at daycare. Her "fit" doesn't end..not after a few minutes, a few hours or even a few days. She has a routine and she can't vary from it. It's not as simple as her adjusting to a new environment so I stay at home with her. That's what she needs right now and she comes first.
I am single handedly responsible for death and dismemberment of multiple trees. Between her paper chart, medical records I have requested for new doctors and the amount of bills I receive from her doctors I have killed a forest. It's ok now that I know I am rich..I'll just pay someone to replace all of the murdered trees. I hate seeing the mail lady. I cross my fingers and pray the entire way to the mailbox that I don't have a bill, letter of denial, or letter saying we will no longer be covering (insert doctor, test or medication..we have gotten them all.) I am currently in a battle to get her PDD behavioral meds covered. It's not going so well at the moment. I dread January and August of every year. That's when the big tests happen. Blood work, echos, vision checks, scans..doctors, radiologist..we get to visit with all of them, pay a nice copay and then watch the mail box for the bills to flood in. We make it, Ainsley will never miss an appointment even if I have to sell a kidney to pay for it. BUT Ainsley did not ask to be sick. She did not ask to have so many medical conditions that can not be cured. What we did ask for was help with her medical bills and was denied assistance because apparently we can afford to pay for it all.
She has speech once a month because that's all the insurance will cover. She doesn't have ABA because they won't cover that. The insurance company won't pay for it, the wonderful government wont help cover it and that leaves me paying for it or Ainsley not having it...because once again...I am rich. Now don't get me wrong, I don't think we are entitled to having free medical care for her. I am pissed that we requested ASSISTANCE with them and were denied while other people get a free ride because they chose to be in the situation they are in. They don't pay ANY medical bills because they chose to sit at home and not get a job.
Why shouldn't I be pissed that people choose not to work and get all of these things for FREE. I didn't even ask for it to be completely free. Brandon works 5 days a week and then works from home on the weekend. He works for a good company that covers 80% of our insurance premium and 50% of our deductible. I would be royally screwed if it weren't for that. He has great benefits. He gets a company car and they cover all of the gas for private and personal use. I really enjoy that since my vehicle is getting close to 100k miles. 100k miles in 5 years..that's a lot of trips to Jackson to see doctors. His salary is good. Our bills are paid on time. Well most of them..you would think that I wouldn't forget to put the 3 bills that have to mailed in the mailbox every month but they always sit on the bar for a week until I accidentally find them and kick myself for forgetting them AGAIN. We eat and we see doctors..and that's OK because Ainsley being alive is work giving up every penny that comes into this house.
I am still pissed though.. If Brandon ran off with his nonexistent secretary tomorrow all of my problems would vanish. Ainsley would have free health care and even get a little check a month. That's fucked up no matter how you look at it. We support people capable of supporting themselves, yet refuse to ASSIST people that work. I have a great group of autism/sotos moms that I talk to, it's amazing and every single one of them say the exact same thing. No matter how much money you make special needs children always need more..more therapy, more doctors, more more more.
I have been told several times she can receive disability the second she turns 18 because our income will no longer matter. Well, I don't want your damn check when she turns 18. I want her to get the therapies she needs now so she won't NEED your stupid check when she is 18. I'm not raising her to be a disabled adult. I am raising her understand her limitations and to find ways to cope with them and lead a happy productive life. If Uncle Sam had half a brain he would realize that by assisting children in getting the therapies they need once they are adults they will be able to support themselves and not need their stupid disability check for the rest of their lives. Well, that just goes to show our government is about as stupid as an emu with its head stuck in a hole. After all, I have seen people received disability checks because they are drug addicts or because they are obese. I'm sorry but you aren't disabled because YOU CHOSE to snort crack or because you made the decision to eat cookies instead of green beans. Those are not reasons that should qualify you to receive disability for the rest of your life. I can understand it for people that have medical reasons for being overweight but not for someone that just has poor eating habits. And I don't have an issue with people being overweight, just the whole disability check for it thing.
I know that the government is not one to piss off and if they happen to see this I will probably be audited next year as pay back but I don't care. To the US government: Here is a big fat middle finger to you! And on Ainsley's 18th birthday I will be sure to send you a video of how amazing she is doing WITHOUT any assistance from you along with a letter detailing why she does NOT need your stupid disability check.