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!
4 comments:
Love that latest photos of the boys. Handsome! I can also say that it gets easier. When I say that I mean the acceptance part. I don't really see Emma as disabled. Obviously she is, but I don't think of her that way. She is just my child. I just see Emma. I guess I have gotten used to it. She is amazing. I try to focus on what she can do and not on what she can't do. I agree that the physical demands on me have increased substantially as Emma has grown. But, I have learned to cope with that. There is so much useful equipment out there that I am no longer afraid of because I have come to realize that it can benefit me, as well as Emma.
Exactly Emma! Brendan is just Brendan. I don't really see his wheelchair anymore. I can't imagine him any other way. I wish his life was easier but it is what it is. :)
I feel the sme about Botox and the baclophan. Isaiah hasn't gotten Botox in about in 2 years cause it stopped lasting but only a few weeks. Isaiah is way to skinny for the pump anyways so the docs aren't even suggesting it yet so I don't have to worry to decide yet.
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