I feel like I need to type this out and get it off my chest. So, my past few posts may not have been the funnest (new word) but this is how my life has been going...It is like being hit from all sides and still standing, but wobbling a lot...
This is me being human, I am not giving up, I am being honest. If you can't handle brute honesty and true emotions then this is not the entry for you to read...
We went to Faiths pediatrician today, for a followup after her seizure. It started out as a good appointment. We are being sent back to the out of town hospital to start attending the seizure clinic, where they will try to find out what is going on. I said that I feel like we should just move there, it would save on gas...I am joking, of course.
The dr was reading the CT scan reports and the radiologists notes, and my heart crushed when she said what she read...she said something I didn't want to hear...
Some of the ventricles in Faiths brain were enlarged. They were wider then they were supposed to be and that shows that she has hydrocephalus. I knew that I had heard the word before and knew that it was not a good thing. The dr went on to say that even though she has it, it isn't that bad, Faiths head has not been growing and her development has been phenomenal. It is something that they had watched for but didn't think it needed to be persued since there were no signs. If she hadn't had that CT scan, we would never know...some good may be there...
She also has scarring on her left brain, which is why, when she has a seizure it is always her right side that is affected. That scarring is from the birth trauma. When the dr was writing in her file, about the actions taken for Faith now, she wrote down "aquiring a seizure disorder". It sounded really bad...I know it is not, but I hate medical talk...it is always so depressing.
We go next week to our hospital for a sleep deprived EEG, that ought to be fun...I have to wake Faith up early and keep her awake until the appointment. Fun times, let me tell you...
So, here I am, trying to keep faith alive (no pun here), trying to make it ok for my other kids, to not scare anyone...I am trying to be the strong one, even though inside I feel like I am melting. I don't know how to describe it. I know that we are surrounded by so many people who truly do care for us and support us, unconditionally, but I still feel so alone, so small. Almost like a punching bag would feel like, I guess, if it could talk;-)
Like we just keep getting hit over and over again and I know that there are worse things out there to be dealing with, but for me this is my breaking point. So many people have said that they would not have been able to make it this far in our situation and I am glad that we have, but I really feel like I need to see an end, and there are just these fields going farther and further in front of us...
Whatever, I am not really making sense, I know that, but I just have to spill it all...My new famous word is disappointed...I feel so disappointed.
I said last time?
I hate this...
Today I was getting my teeth cleaned and the D.H. and I were chatting and she mentioned her daughter (who is now 8) once had an hour long seizure, she was blue. One time she had so many back to back that she was put on a respiratory machine and was flown to Ottawa Sick Kids. They put her on medication (she was about 2) for only a year and has been fine every since, no brain damage at all.
ReplyDeleteThen I shared with her about Faith and the newest doctor's report and she said to tell you about her niece. (she's not saved and said that you need as many positive stories to hear as possible)
Her niece was diagnosed with Hydrocep... when she was 8 months old, she had a large bubble in her frontal lobe. She had a few seizures because of the pressure so was put on medication for a year at a time. She had a shunt put in to help drain the fluid and at around 6 years old went to get a bigger shunt when they realized that the water was no longer gathering, her body was absorbing it naturally and normally. She is in her early 30's now and is perfectly healthy.