I've learned a lot about doctors.
Chickadee's primary care doctor didn't believe me for 10 months that anything was wrong. She taught me that I just might be right. Even after the expert has told me I'm wrong many times.
The neurologist, our first specialist, taught me that it takes 3-6 months to be seen by a specialist. And I don't even know if I'll get any answers.
The pulmonary doctor taught me that dire predictions don't always come true. Chickadee outlasted her need for a g-tube by 18 months.
The developmental pediatrician taught me the importance of primary care. Even though the former may prescribe, it is the latter that must call it in. She also taught me that though things may not make sense, I must abide by the system or get run over by it.
Gastroenterology taught us that the medicine we need may not be what we want or expect.
Today I'm trying to use all of this knowledge.
Really really hard.
Chickadee and I went to this study. It's called the Rett Syndrome Natural History Study. Wonderful doctors that specialize in Rett Syndrome volunteer their time to do these traveling clinics around the country. There are three Rett Syndrome specialty clinics in the nation. One at the Children's Hospital in Boston, one in the University of Alabama at Birmingham, and one at the Baylor College of Medicine in Houston.
They travel biannually to clinics around the country to take in a historical study of the Syndrome. We are enabling the girls after us to have a better picture of life, as well as provided the basis for future research, and medical therapies.
It's about the only time when I'm not the one in the room that is the expert on Rett Syndrome. It happens twice a year, and I'm a sponge for it. I meet other Rett moms and we're instabuddies. I mourn a bit over the darling little tiny ones that are just starting to regress, and I acclimate to our future as I get to know the older girls.
But, today was the first time it felt like the other doctor visits.
Not that I was going to have to fight the doctor, or second opinion, or wait a tremendously long time for nothing. No. For once, a doctor cut through the crap and told it like it was.
He was right.
It is etched in my brain.
I have to fight for her. I've got to go up against the insurance and see how much physical therapy she is entitled to. Because she needs it in addition to school. She needs more than two days a week at school. She needs more than a 2:1 ratio of students : teachers. I'm going to have to tear the education plan apart. Which means...
We cannot fly under the radar to keep her with her teachers. If I put up a stink, the school is going to make sure we are in their district. In essence, when I do this, I'm going to have to move all three kids to the new school. I might as well do this right, so I only need to do it once.
There is no money to pay for therapy. The down payment we had saved up, is carefully planned out to last us until money starts coming in again. My husband is unemployed. We're living on hopes and dreams here. The insurance is tenuous, our old company went bankrupt, and the new one increased our rates. We can't lose this, or Chickadee will never get affordable insurance again. We don't qualify for the children's special needs' Medicare next year. Unemployment would qualify us for it, but we hope to have a job. In which case, we've already earned too much in 2010.
Basically, Mr. Survival listened to my breakdown in the bedroom. He fetched me tissues for my nose, and asked all the right questions. We led each other to despair and back again. We both thanked heaven this came now, when we feel competent to rise to the occasion, and not the past couple of weeks when I would have exploded. We're determined, and hopeful. It's a marathon.
One request?
Help me stay away from ice cream.
Writing this probably kept 2300 calories out of my gut.
Seriously.
Chickadee's primary care doctor didn't believe me for 10 months that anything was wrong. She taught me that I just might be right. Even after the expert has told me I'm wrong many times.
The neurologist, our first specialist, taught me that it takes 3-6 months to be seen by a specialist. And I don't even know if I'll get any answers.
The pulmonary doctor taught me that dire predictions don't always come true. Chickadee outlasted her need for a g-tube by 18 months.
The developmental pediatrician taught me the importance of primary care. Even though the former may prescribe, it is the latter that must call it in. She also taught me that though things may not make sense, I must abide by the system or get run over by it.
Gastroenterology taught us that the medicine we need may not be what we want or expect.
Today I'm trying to use all of this knowledge.
Really really hard.
Chickadee and I went to this study. It's called the Rett Syndrome Natural History Study. Wonderful doctors that specialize in Rett Syndrome volunteer their time to do these traveling clinics around the country. There are three Rett Syndrome specialty clinics in the nation. One at the Children's Hospital in Boston, one in the University of Alabama at Birmingham, and one at the Baylor College of Medicine in Houston.
They travel biannually to clinics around the country to take in a historical study of the Syndrome. We are enabling the girls after us to have a better picture of life, as well as provided the basis for future research, and medical therapies.
It's about the only time when I'm not the one in the room that is the expert on Rett Syndrome. It happens twice a year, and I'm a sponge for it. I meet other Rett moms and we're instabuddies. I mourn a bit over the darling little tiny ones that are just starting to regress, and I acclimate to our future as I get to know the older girls.
But, today was the first time it felt like the other doctor visits.
Not that I was going to have to fight the doctor, or second opinion, or wait a tremendously long time for nothing. No. For once, a doctor cut through the crap and told it like it was.
He was right.
It is etched in my brain.
"She is more autistic-she must be more socialized"and
"There is no reason for her loss of standing and stepping abilities. This syndrome does not behave that way. She needs more therapies, she should have already gotten it back."I hope my fellow special needs parents excuse me for not cheering. He confirmed my worst fears. That Chickadee is not getting enough. Not enough physical therapy, nor enough cognitive stimulation.
I have to fight for her. I've got to go up against the insurance and see how much physical therapy she is entitled to. Because she needs it in addition to school. She needs more than two days a week at school. She needs more than a 2:1 ratio of students : teachers. I'm going to have to tear the education plan apart. Which means...
We cannot fly under the radar to keep her with her teachers. If I put up a stink, the school is going to make sure we are in their district. In essence, when I do this, I'm going to have to move all three kids to the new school. I might as well do this right, so I only need to do it once.
There is no money to pay for therapy. The down payment we had saved up, is carefully planned out to last us until money starts coming in again. My husband is unemployed. We're living on hopes and dreams here. The insurance is tenuous, our old company went bankrupt, and the new one increased our rates. We can't lose this, or Chickadee will never get affordable insurance again. We don't qualify for the children's special needs' Medicare next year. Unemployment would qualify us for it, but we hope to have a job. In which case, we've already earned too much in 2010.
Basically, Mr. Survival listened to my breakdown in the bedroom. He fetched me tissues for my nose, and asked all the right questions. We led each other to despair and back again. We both thanked heaven this came now, when we feel competent to rise to the occasion, and not the past couple of weeks when I would have exploded. We're determined, and hopeful. It's a marathon.
One request?
Help me stay away from ice cream.
Writing this probably kept 2300 calories out of my gut.
Seriously.
I am in tears for so many reasons. The first is the raging injustice in America when it comes to health. Having lived in Australia for the past 4 1/2 years the complete and utter disregard to taking care of our people in America makes my blood boil. The second is that you're a Mom through and through. You're willing to do whatever WHATEVER it takes to take care of this child of yours and it's incredible. Many people would have given up, quit, stopped fighting...because it's all too hard. But you don't. You can't. Third you took a huge step and wrote it all out. Not shoving ice cream down your throat to cope, but letting the scary nasty ugly reality out. You're a beautiful incredible woman.
ReplyDeleteNever ever give up the writing. You give me hope. Your situation gives me reason to keep on praying and to believe. What can I do JBS? Tell me...I'll do it.
ReplyDeleteAustism. the Son-Rise Program. Have you heard of it? I didn't believe it until I saw a special on TV about real cases. And there lots on YouTube.
ReplyDeleteYou must hate reading my blog when all I have to yell about is chin hair, flabby arms, and bad weather. I wish you could write this post to every senator in your country. I wish you could hand deliver this to Washington. I know nothing about how things work from a health perspective in the USA, but this is wrong. It's just wrong!! What can we do to help?
ReplyDeleteI'm in awe over your tremendous amount of strength and determination to help your daughter get the help she needs. She is so very lucky to have you!
ReplyDeleteYou are in my prayers!
I can feel your frustration and worry in every word you wrote here.
ReplyDeleteI'm not sure what is available in your neck of the woods... But when we realized that our son was going to need more therapy that the state was able/willing to give him we got him in with Children's Specialized Hospital. Our insurance covered 20 visits of PT and OT a year. After that we were able to qualify for their Hospital Assistance Program that pretty much covered anything the insurance did not. I believe that most pediatric therapy hospitals have a similar program funded by donations and philanthropy. They don't advertise them, so you have to ask their billing departments. Anyway, I really hope that you are able to get the services she needs. Fingers crossed and saying a prayer for you.
Every one of these comments are amazing. Hang in there he will give you the path even if you have to cut many branches as you struggle up it. You are the best writer ever, never never stop you are a voice for her that she can not get out there herself. I wish I knew what would help to make the path clear, but I admit I do not know. If you make money is there a spin down type system that will still cover most for her care even when there is insurance if she could get medicare? I am not sure how each state works but that is how the medicare works in this state. So until there is a job then she would get lots of care covered even if you have insurance? Grasping here only you understand with your situation of course. But I only know that you must keep fighting and looking, you are so so strong. Good for you not eating the sugar and writing instead. Hugs if I hear of anything to help I will let you know.
ReplyDeleteyou are an amazing strong resilient woman and I WISH I COULD HELP (can I? is there a way? JUST SAY!)
ReplyDeleteI echo the Son-Rise Program suggestion as well.
Carla
Hi there! I responded to your request on Flickr. Can you please remove the photo? Thanks :)
ReplyDeleteWE love you and are praying for you. HOpe you are doing alright. You are a wonderful mom wife friend and sister.
ReplyDeleteLOVES
You are amazing. I know that probably doesn't help much, when you are hanging by a shred, but I am in awe of your ability to keep trucking along, in the face of so many difficulties and heartbreaks. You keep writing, and we'll keep reading. It's therapy in both directions. Hang in there. Hugs.
ReplyDelete