If you`re unfamiliar with my sister, here`s her story: https://www.closetsamples.com/2012/02/note-cry-for-help-for-my-sister.html with all the previous updates links.
Not too much has changed since my last update. Amy continues to have medical problems and some days are better than others for her. Recently my parents started bringing Amy to Children`s Hospital in Texas to try and hopefully get more information. Of course during the testing she didn`t have any seizures, which is not what we wanted. Of course we want her seizures to stop, but these particular tests they were doing they really needed to see the seizure activity to gather more information on it. You have to remember rather than playing around at home, she was basically confined to the hospital where you can`t run around or anything you typically done at home which is most likely why it didn`t happen. Nothing happened to over excite her, no running around outside, etc.
As of now they have another appointment to go back to the hospital in Texas sometime in the next few months, I won`t give the exact day due to privacy reasons, for more testing and talking to doctors. They did learn however from this trip of how Amy`s brain does not function as it should as far as memory and such goes and learning ability. It is effecting both sides of her brain which means she does not qualify for brain surgery. She also is confirmed to have some mental retardation, which is still a hard hit to hear. I`m not sure of to what degree, but it`s still there. You know how you can KNOW something, but just having it confirmed just basically sucks to put it gently.
Also, my mom has been talking to the school board. They are supposed to be getting her someone to come to the house 3 times a week that IS a certified teacher. She hasn`t heard anything back as when that will start. I`m hoping this turns out to be someone good and knowledgeable for special needs children that knows how to work with her. It`s hard to find someone dedicated who truly cares so we`re hoping that works out.
I`m not sure if I had made an update or not, but during the summer we had a group of kids from a local church stopping by to play with Amy for a few hours just about every day. These were volunteers from different parts of the US who basically were just walking around outside going door to door, I`m not sure for what exactly, but obviously make a difference in someones life. Well one of the neighbors pointed out my parents house and they knocked on the door. I passed by a few times while they were there and they played so well and it made Amy`s day. She`s always looking for friends and just someone to play with. My mom and family are so grateful to those people who gave their time and they have have no idea of what a difference they have made in her life. She never felt more special than when those groups would come by and just give her all the attention she could have asked for. That`s something that no money could by and it made my mom just so happy to have those wonderful people pass through their lives. So if any of you actually come across this page just know that we are ALL grateful and thankful for that. Your time and your compassion. I know it was nice for my mom to have different people to talk to and just kind of give her a brief break where she could maybe get one thing done that she wouldn`t have been able to do otherwise.
My parents are still struggling financially, mainly due to the overwhelming amount of medical bills. Just to buy recent groceries she split the bill up between 3 credit cards and a check. I hate seeing them in that position, yet she doesn`t let it show when it comes to trying to provide the best for Amy or even me. I wish there was more I could do to help but realistically I`m not in the position to do much of anything. Which is why I figured I`d do what I know and just share the information. Who knows right? I know they hate the position they`re in and I know she just won`t ask for the financial help she needs. Too much pride? I don`t know. I`m honestly at a loss for words at the moment.
Thank you again to everyone who reads her updates and shares the information. All the comments and stories of heard of support are amazing and I actually do pass them along to my mom who is grateful. So thank you again everyone.
P.S.-- Amy did do great at my wedding and looked amazing and had a great time! We were so worried she may have a seizure from getting too excited, but the night had gone by without any problems for her!