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First we learned that statistics and percentages are just numbers and we can't focus on them. If we did, we would go crazy. I mean being told "your child has a 5% chance of making it through biospy" is enough to drive a parent mad. Then hearing "your child has a higher chance of being on of 20% who don't respond to treatment" would have driven us mad. And now "46% chance of reactivation" could drive us crazy but we choose to veiw him as just HIM and not part of this percentage. They have their place (80% chance of treatment working is pretty darn good and hopeful), but they also have their disadvantages as every child is different.
We learned that Walgreens has a Home Health Pharmacy called Home Options, and I DO NOT like them at all, well except one guy.
I learned how to draw labs from a port.
I learned that doctors do not know everything and sometimes they are wrong.
I know there is so much more, but I canoot for the life of me think of all of it.
Plus, insurance is horrible - no matter how expensive it is. And home health supply companies will rip you off every chance they get. If your insurance let's you, do your own research and order online - then submit for reimbursement. BCBS let us, we saved tonnes. UHC will not - we're getting hosed. Also, no does not mean no with insurance companies - demand a case manager, and push-push-push. If EI isn't giving you enough therapy sessions (like weekly) through the 0-3 program, drop them like a fly and go through private insurance. Every child should be seen as often as possible, if it fits within your plan (we go weekly, and have never been part of EI since they're short staffed out here).
Another big thing we've learned - how to be a parent all over again, after having a healthy child born second. I find him more difficult to care for than my SN child.
I couldn't agree more with Tara's statement about how getting a diagnosis for your child changes YOU completely. I feel like a completely different person and mother than I was when it was just us and Eric.
I've learned more about patience, and more about pain.
I've learned not to sweat the small stuff.
I've learned a lot about how I deal with bad news and crises.
I've learned more about blood work and hospitals than I ever wanted to know.
I've learned more about hearing loss than I ever imagined existed.
I have learned that I as a parent know more about my children's disorders than most doctors do.
I have learned patience, though I haven't mastered that one yet.
I have learned that the more I feel I have to learn, the more I don't want to.
I have learned that doctors don't know everything.
I have learned to trust my gut feeling when it comes to my children, after all they say, "mom knows best".
If you don't like what one doc tells you, get a second opinion.
I have learned that friends and family are a very valuable asset even if they can't understand fully what you are going through.
I have learned that support meet ups are an excellent place to feel at home.
I have learned...
...that I am my children's greatest advocate. It is up to me to know every detail about their health. If I'm told something, I research. If I'm not told something, I research. Research is our key. I now know how to get what I want for my kids-and I know better what they need.
...how to trust myself. "Gut feeling" goes a long way in getting treatment for your child.
...that I CAN stand up for something-my kids! (I have a bad "doormat" history.) I'm a completely passive person, but apparently am something of a "mama bear." And proud of it!
...that the squeaky wheel definitely gets the grease. I KNEW that something was wrong, even if some doctor visits or tests seemed normal. And I was right-but I had to convince them that I was right. I was downright annoying, but my children are doing MUCH better.
...that no one else is in my shoes. I don't HAVE to take advice, use their doctor, parent the same way. Sure, I knew this with Kannon, but I'm sure that having to be so forceful about Milo made me finally understand that I'm really not going to please everyone.
...that I'm stronger than I thought. I've been through a lot all by myself, and then more with my kids. (This isn't a woe is me thing, and I know that SO many people are going through WAY more difficult situations, but you understand what I mean, I'm sure.) I can't believe how hard I've had to fight, how strong I've had to be, and how much *I* have had to comfort *others* when it comes to Milo. I was strong before, thought I lost it, but I think I've regained it.
There's so much more that I have learned. There's even more that I'm still learning, though!