Channel 12 news

Wednesday, March 27, 2013

Let's talk IPad!

Okay who has them and who uses them for educational purposes for their disabled child? I am looking into getting Brendan one to use in school. Technology really motivates him and we need something to help him learn. He is way behind. He is slowly getting there and I know he is smarter than he appears on paper but I am hoping an IPad with all of their amazing apps can help him progress.

If you have one is the IPad 2 good enough? Should I just buy a refurbished IPad 2 and save a few hundred dollars?

HELP! :)

Saturday, March 9, 2013

My lack of blogging, Botox, & baby Drew

Wow life is busy. I have not had any time to blog and so many people have been emailing me telling me they love my blog. I was all of you one day. Just starting out on this crazy life adventure finding out my innocent baby has cerebral palsy. Let me tell you all again IT GETS EASIER! At least I think so. Maybe it is due to full acceptance of this life you did not expect. Maybe it is all those tiny milestones they reach that makes your heart gush with love. Maybe it is the fact they amaze you all the time with what they can accomplish and learn. I am not sure what it is because obviously the physical part becomes more difficult. Brendan's head is up by my chin already. He is getting so big! I can not even lift him without some sort of grunting noise which he now makes himself as I am about to lift him up. Making fun of me...most likely.

Brendan had Botox injections once again last month. He seemed very loose at first but he is already tight again. I am not sure Botox is working as well as it once did. I knew this could happen. He has had the injections since he was just two years old. I am not ready for the baclofen pump. It seems to risky to me. I have been reading about a little boy who had a tree limb hit him in the head and he has spent 4 months in the hospital. He had the baclofen pump installed and he came down with bacterial meningitis....one of my worst fears regarding the pump. Sometimes I feel like I read things for a reason and that very sentence confirmed that he shouldn't get the pump. I want to add that I feel very fortunate that my son was born this way and a tragedy did not cause his brain damage because I can't imagine losing the child you know and having to learn how to care for them in a new way. It must be heart wrenching. On a positive note Brendan did not regress in his bed wetting after Botox. He has been doing awesome!

My little Drew is already 7 months old. He is so much fun. He is such a happy baby and is always developing right on track. He is by the book type of baby. I really enjoy watching him grow. I know he is the last so I am enjoying it all. His siblings love him to pieces and are all so helpful. Even Brendan requests to feed him his baby food and change his diapers. He is such a ham and absolutely adorable.

Oh I almost forgot, Brendan needs glasses! He had his routine eye appointment last Monday and they finally prescribed him glasses. I am not surprised since his father and I are blind as can be. He is very excited and chose blue frames. I will post a picture when they come in. The eye doctor mentioned he has minor damage to his optic nerve called atrophy which I read can be due to his CVI since they don't use that part of the eye as much it can basically shut down. Not something I want to hear or think about but such is life. I said it gets easier but I still feel like I get punched in the gut every time I hear something is wrong with him. He has endured so much and to think something is wrong with his eyes that can not be fixed, something is wrong with his heart even after a surgery, and that his lift hip isn't looking so hot is a lot to have on the back of my mind. Maybe it gets easier because we just learn to push certain things back until we HAVE to deal with them or maybe we get used to hearing horrible things about our children. I am just very fortunate that all my other children are healthy because I don't know how much my heart could handle. I still to take things day by day to keep myself sane!