Thursday, January 27, 2011

sometimes life is crap

Today is thursday which is aiden and madisyn's speech day. Madisyn was discharged from speech last week, and she is progressing very well with her developmental issues from her scar tissue on her brain.

Aiden was kind of upset that he still had to go, which made me sad but its the best for him to help him along. As kindergarten approaches a lot sooner than I think, I am very concerned that he will not be ready with his speech and how some people can't understand him. My thoughts in my mind as of right now that I have been going through my mind a lot lately. Are the kids going to make fun of him because he may not be where everyone else is on language and have to explain to a 5 yr old why kids can be so mean, or even why the kids won't play with him because they don't understand what he's saying.
As I talked to the therapist today, she has stated that aiden has a severe case of apraxia which could stay with him forever and he may have to deal with this forever. I keep thinking that maybe I did something while I was pregnant with him that caused him to have this speech apraxia everyone talks about. So now they are thinking that maybe a speech communication device that he has to carry around with him everywhere to help with his speech. They give these machines to people that can't talk or communicate with others or even people who have had strokes and can no longer speak. I hope that this machine if he qualifies for it really helps him to talk a lot better but I don't know I guess we will just have to wait and see what happens. Sometimes I think life for kids is harder than we think, especially children that have a disability.But as one of my family members quoted today "Life has handed me a fare share of lemons. I have decided to make grape juice with them, then stand back and watch everyone wonder how the hell I did it" I know that he will succeed in whatever he does. I sometimes thing that aiden is smarter than he lets people know but because he can't communicate well with others he isn't able to express those feelings.
 Our children have been through a lot aiden has been in speech therapy since he was 18 months old and speeking doesn't come easy to him like it does to everyone else in the world. Madisyn has been through hell and back with all of her things that she has had to deal with in her young 3 years of life. From many many blood draws and me flipping out on the nurse because she didn't know what the hell she was doing and I wasn't letting her near my baby with that huge needle that she wanted to stick in her head, to MRI's, genetics, speech therapy, physical therapy, occupational therapy, early intervention, Plagiocephaly (flat head), Cardiology because she high cholesterol for some reason, neurology, her doctor every 6 months for weight checks. Only to find out that all they had to do was an Mri to know why she had developmental delays.
 Yes, My children have been through hell and back and the crazy thing about the whole thing is that no one knows why. Why did this happen, why does Madisyn have scar tissue on her brain, they say she may have had a stroke when I was pregnant with her. So we always have to watch for seizures because scar tissue on the brain causes that to happen,  perfect pregnancies, perfect kids but sometimes life is just a bitch right. I will never forget when we went to the air force base here in Dayton, Ohio the cardiologist said to me "there is nothing that you did or could have done to have prevented this from happening to her". But we will get through all of it no matter what. We have been through so many hoops and loops and arguing with people to get our children what they need to be successful and I know that there will probably be more hoops and loops here in the near future.
Aiden Michael
Madisyn Rose

Aiden turns 1
Madisyn Rose turns 1
 I have to tell you now that I know why people live in blue ribbon school districts. I think that if we would have stayed where we lived when we first moved here my children would probably be getting a better education than where we are now, but thats life and welcome to the journey of your life.

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