Today I am thankful for insurance and other state provided programs that help Sadie. She requires a lot of work, and for that work, people need to be paid. We go to/have 6 therapies a week, she has 2 different wheelchairs, and so many doctors that I've lost count. Because the state has recognized that she'll be disabled and need care and equipment for her entire life, we don't have to pay copays, they cover whatever our private insurance doesn't when it comes to equipment, and they pay for all of her prescriptions. It's really nice to not have to pay for those things out of our own pockets. I can't imagine the $30 copay each and everytime we visit a doctor. Or paying 20% of equipment that costs $2000. And today, she had her first injections of Botox in her hips...the copay was $100!!!! I am very thankful that they'll pick up that tab!
I am very concerned that as Sadie grows up, we'll see changes in programs like this and we won't be as lucky as to receive services that pay for Sadie's therapies, doctors visits, and medical equipment. I hope that this isn't the case and that we'll continue to see positive changes if we see any at all. Each and every November, I'd like to be able to recognize just how thankful I am for these programs. And I'd also ask you to think of families like ours whenever you have a chance to vote for a decision concerning healthcare.
And now on to what we did today... we had a big day!
First we had a meeting regarding Sadie going to preschool. This was her MET (the meeting of her Multidisciplinary Educational Team), which is the last meeting before we write her IEP. The thing is, this has been a LOOOOONG drawn out process. It is always a big deal to get us to these meetings (being hugely pregnant, Brian taking time off of work, and now having to haul in two children...), and sometimes it feels like we could have just had the conversation over the phone or through email. There are meetings about what we talked about at the last meeting, then there are meetings about what the next meeting is going to be about. And today was a meeting about what we did at the last meeting and to determine eligibility...duh, she's eligible for special education.
But we jumped through the hoops and I'm excited because our next meeting WILL be her IEP, and that's the last step before she can go to school!! So, that's exciting.
Then this afternoon, Sadie had an appointment for Botox injections in her hip adductors (insides of her thighs). We were both a little nervous about this (and by we, I mean Brian and me), but it was REALLY not a big deal. The doctor seriously came in, hooked up Sadie to a TENS machine to stimulate her muscle, then she injected the medicine. Then she did the other leg. Sadie was a little shocked at the first one, and then cried a little with the second one...and we were done.
We have been told that it takes 24-48 hours for us to see the effects of the Botox. So far, it's not apparent. We'll also be getting her a brace to wear at night that helps with extended stretching to help loosen up those adductors. And we know that this isn't going to prevent surgery, but hopefully it'll delay it for a while.
Tell me what you think? Have you or your child had Botox (not cosmetically)? How did it work for you? Any advice or words of wisdom?
(I have pictures, but my hotmail account isn't working right and I can't access them... maybe tomorrow!)