I did not hear from the doctor Friday, so I am sure we will hear something Monday. She had no fevers Friday or today. She is a lot more active, so maybe she has gotten over whatever she had. She still of course has had her typical chiari symptoms… her headaches, eye pain… what have you. I do want to explain that her symptoms come and go… she can have them once a day, more than once a day, all day, go for a few days without…you just never know, and I believe she has come to learn to just deal with it all the best she can. That doesn’t mean she doesn’t complain, because I feel like I hear it all the time, and I just jot it all down in her notebook.
There has been a few questions, that keep getting asked, so I thought I would answer them for everyone.
We have been asked how much does Kaylie know about her condition. This is how I have explained it to her. We told her that when she was born her skull bones were a little small, and that her brain has grown so fast, and gotten bigger (because she is so smart!) and it has run out of room, so it decided to grow downwards. And this is why she has the headaches. We have asked her if she is tired of the headaches, and she has said yes. We told her we will be seeing lots of special doctors to help make them stop. She knows that we have this blog… to tell all our friends and family about her special brain. And that’s it. We have not told her about the possibilities of future surgery. I don’t think she needs to know all that right now, or anytime soon. We will cross that bridge when it comes.
Many have asked if Abby (our 7yr old) knows. She knows everything! We have not hidden anything from her, she does know that Kay may need surgery one day, we just don’t know when. But, we have not gone into details about the surgery. She is concerned about Kay. She has asked questions mainly about how did she get this and why. We explained to her that Kay was born this way, and we don’t know why. I explained to her that things happen to people for no reason. That someone can live a long time, be fine, then all of a sudden be sick or have an illness. That they did nothing wrong… it just happens. But we will be fine, Kay will get all the help she needs…. Everything will work out.
I have been asked about school. Most of you know I have gone back to school for nursing. I was taking 13 hours this semester. I dropped my A&P class, it was just too much with everything that is going on with Kay. I had talked to my A&P professor about it all… and he thought that was best for me at the time too. I am already enrolled for the same class to retake it in the fall. It kind of sucks… I had an A in it, was doing very well… loved it. But I will be able to do it again!! I still have 9 hours of school I am taking… will finish those up this semester. I am currently registered (have already paid for it) a class for this summer… but I will probably cancel it, after getting the results from Kay’s 2nd MRI. I may try to switch it to an online class… I just haven’t decided yet. I am very fortunate that I have been a stay at home mom, and that there is no hurry for my school. All this may set me back some, but it will be fine. Kay & my family will always come first!
As soon as I hear from the doctors Monday… I will let everyone know! The the BIG Neuro appointment Tuesday!!!