Kids are doing ok, just a few issues here and there.. School is trying to make life harder than it needs to be.. but hazards of having special needs kiddos I guess. Ive finally gotten over the Im so pissed I cant see stage and to the I dont give a damn stage with it.. Let them call DCFS on us I KNOW I'm doing what I NEED to do with my kids and doing what the doctors are telling us and if they cant accept that then let them call DCFS.. (Ill hand em the phone since they are so eager!) Talked to our case worker today and he said that unfortunately this seems to happen when ppl learn that you have a open DCFS case that they seem to have more reports and calls .. He said that we should be able to hopefully curb that with getting a social worker from Glennon involved so he has ONE instead of 14 docs to go to! I hope so cuz this is just becoming a pita!! I mean I know my kids are complicated.. I live with them daily and take care of them and also I deal with all the docs, appointments, meds, fits, seizures and everything thing else that can and does happen.. Thank God for Tim being here and helping out so much specially with the behaviors.. its hard to watch your kids go thru these things.. one day be fine, the next cuz they did to much to be so completely wiped out they can barely sit up or stay awake the next day.. or to sit and watch them turn blue for "no reason" and knowing u really cant do anything bout it but deal with it.. It kills us to have to watch this and we cant really do anything to help cuz all we get is " Its the Mito".. ugh! I dont like that answer any more than the school but I have to accept it and deal with it and take care of them as things happen and observe that nothing else is happening and that everything else is ok.. It sucks!! but damn ppl dont make our life a living hell because you dont take the time to understand the disease or have the compassion to find out how you can help.. We live thru enough hell dealing with all the medical issues we dont need the bs that comes with all the crap that is out of our control! it just frustrates me to no end that ppl seem to have nothing better to do with their time.. I mean if your that bored.. we could always use a few extra hands around here to help with the kids.. then you would see what we see and have to deal with on a daily basis.. Its honestly heart breaking when you know you cant do anything for your child but make them comfortable and just watch the disease take over their life and bodies and slowly have things not work.. being powerless and helpless to help them.. knowing what it is doing but not able to help stop it.. With Austins seizures its scary.. all the what does this mean's running thru my head... I mean we know the Mito affects his brain already (the autism), but to now cause seizures and the hypothalamus this isnt going to be easy.. Austin is starting down a long spiral and Im not liking it at all.. I just hope we can slow this damn thing down and not "crash".. I am so afraid of that at the moment.. If he crashes, where is that going to leave him, what damage will it do, what things will have to change... all the thoughts of the what ifs.. its just wearing on me and making life quite frankly depressing watching this every day and knowing that its taking a small piece of him everytime.. the pain he endures during and after.. blah! Anyways... sorry had to rant.. its been building up and here is one of the only safe places to do that...
Phoebe is doing well.. and Adam is eh, doing ok.. he is having some issues with being extra whiny but who knows just a phase or is it the Mito making him more tired which makes him more whiny.. hard to tell .. I wish it was just black n white!!!! :( Andy is doing great. trying to get him ready for his driving permit!! yes driving! OMG where has the time gone!? Other than gone by too fast!!
Holidays are coming up and Im really nervous bout them and wondering how they will turn out this year not to mention how the kids are gonna do this year.. hopefully we have some handle on things in the next few weeks and it wont be as big an issue! We will have to wait and see..
hoping to get out a bit this weekend so that the kids can have some fun with the cooler weather.. this is "their summer" with it being cooler :) they are really enjoying the cooler weather :)
I will update again soon... have a great night!! :) Im FREEZING!! Gonna go curl up with a blankie!!
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