ok the last post should've posted some time last week...
update: we have an appt at the MD clinic on Thursday! da da da daaaaa!!!! so check back Friday-ish to find out how that went... I really have no idea what to expect. but they did keep trying to make his appt like it was a follow up, I had to say quite a few times that it wasn't really a follow up because we have never seen any of the drs other than the nurse practitioner. I think the dude was confused because we have been there twice but haven't seen any of the specialists... so well see how it goes!
we have some other sad stuff going on at the moment... but ill write about that later. nothing to do with the kids though, so dont worry! but dont you hate when youre in a down mood and all you want to do is listen to melancholy music which only further deepens your sadness? ugh... vicious cycles and their vicious cycling ways...
the word melancholy reminds of the movie 'melancholia' super weird... just fyi...
Monday, July 29, 2013
just some nothings.
I don't have much to write about but I felt like blogging a bit... which is odd, who feels the need to write when they literally have nothing important to say. weird.
no news on any front for us. I got a message from social services yesterday to schedule the appt for finnys evaluation which is awesome, I really thought id be waiting and bugging the crap outta somebody for that. thankfully I was wrong.
im picking up lab orders for the boys this week, were having asheys ck levels checked just to give ourselves some peace of mind... I would be shocked if he had elevated levels which would tell us we need to do some further investigating into the possibility that he also has MD, but after hearing a lot of stories lately of other non-carrier moms having multiple children with MD, I would just feel better knowing he definitely does not have it. that should be fun... taking a three year old to get his blood drawn. ugh.
oh! we had an evaluation with physical therapy last week, and they determined that hes pretty good right now and we don't need to do anything but come back in 6 months for another check up. woohoo! we did go over some stretches that we have started doing daily with the finkelstien, and were waiting on an order for him to get new braces, but other than that... pretty good appt.
still nothing from the MDA clinic at Childrens... ill be calling them this week. its pretty frustrating. I was under the impression that wed have an appt by the end of july and here it is, the end of july and we haven't even made an appt for the future. not gonna lie, I kinda wanna punch somebody about it. and this is my 'angry week' if you know what I mean... so they betta watch out! ha!
no news on any front for us. I got a message from social services yesterday to schedule the appt for finnys evaluation which is awesome, I really thought id be waiting and bugging the crap outta somebody for that. thankfully I was wrong.
im picking up lab orders for the boys this week, were having asheys ck levels checked just to give ourselves some peace of mind... I would be shocked if he had elevated levels which would tell us we need to do some further investigating into the possibility that he also has MD, but after hearing a lot of stories lately of other non-carrier moms having multiple children with MD, I would just feel better knowing he definitely does not have it. that should be fun... taking a three year old to get his blood drawn. ugh.
oh! we had an evaluation with physical therapy last week, and they determined that hes pretty good right now and we don't need to do anything but come back in 6 months for another check up. woohoo! we did go over some stretches that we have started doing daily with the finkelstien, and were waiting on an order for him to get new braces, but other than that... pretty good appt.
still nothing from the MDA clinic at Childrens... ill be calling them this week. its pretty frustrating. I was under the impression that wed have an appt by the end of july and here it is, the end of july and we haven't even made an appt for the future. not gonna lie, I kinda wanna punch somebody about it. and this is my 'angry week' if you know what I mean... so they betta watch out! ha!
Tuesday, July 16, 2013
truths.
so the hubs work switched insurance companies and I feel like ive been on the phone with them almost everyday. feels like I just got used to the old one and now I have to learn a whole new system. its kinda funny, im 31 years old, im married with two kids and the thing that has made me really feel like an adult is fighting my insurance company. ha! i mean, its not that bad... i just know that for things that will be extra expensive, i have to call and find out what hoops exactly i need to jump through and when. we don't want to be stuck with some outrageous bill because i did the steps out of order... tricksy little insurances...
and keeping my insurance theme going, ive still been trying to get finny on Medicaid. theres a bunch of different waivers and things you can apply for, some take years to get on, and some are much faster, and by much faster i mean like within a year... its still the government. but ive found out which one he needs now. woohoo!
so anyway, i find the waiver application online and im going through it, filling it out, and i get to that part that is specifically about the person in the household that needs the supplemental medical insurance. so basically it shows the names of everyone in the house and theres options below each name, 'disabled', and 'not disabled.'
my first instinct was to click 'not disabled' for everyone in my family... but then i had to really think about it. and i know, it should seem totally obvious, my son has a disability, therefore he is disabled. but it wasn't. somehow it seemed like lying to say he was disabled. yeah, he doesn't walk as well as other kids, he falls down a lot, and gets a little more tired than others, but that doesn't make him disabled. but he is.
i guess ive never had to actually think or say 'my child is disabled.' it seems not so bad to say that he has a disability, like its just a part of him, not who he is...
i did not like clicking that option.
and keeping my insurance theme going, ive still been trying to get finny on Medicaid. theres a bunch of different waivers and things you can apply for, some take years to get on, and some are much faster, and by much faster i mean like within a year... its still the government. but ive found out which one he needs now. woohoo!
so anyway, i find the waiver application online and im going through it, filling it out, and i get to that part that is specifically about the person in the household that needs the supplemental medical insurance. so basically it shows the names of everyone in the house and theres options below each name, 'disabled', and 'not disabled.'
my first instinct was to click 'not disabled' for everyone in my family... but then i had to really think about it. and i know, it should seem totally obvious, my son has a disability, therefore he is disabled. but it wasn't. somehow it seemed like lying to say he was disabled. yeah, he doesn't walk as well as other kids, he falls down a lot, and gets a little more tired than others, but that doesn't make him disabled. but he is.
i guess ive never had to actually think or say 'my child is disabled.' it seems not so bad to say that he has a disability, like its just a part of him, not who he is...
i did not like clicking that option.
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