February 8th, 2008

It's been a busy week. Kinnick's tummy continues to be a problem. We had to take her back to Wesley Hospital yesterday. She is on a 48 hr bowel rest. She will not get anything to eat and will be on IV fluids. They completed an upper GI that they have tracked all of the way through her bowels. They have not found an obstrustion. However her tummy is still huge and hard. Her stomach is empty and her intestines are full of gas. One nurse described her intestines as looking like they are full of large mashmellows. They are doing 2 enemas a day and giving her colace 3 times a day. They are trying to empy the bowels. My understanding is that they believe the bowels are pretty much empty as of this evening. They believe the problem is an illious (sp). This is where the bowel is not moving or is moving very slowly. The only cure they are giving is bowel rest. The say the bowels will just start moving again on their own. I'm worried because the last time she had this problem, they finally found an obstruction after struggling with the issue for a month or longer. She's already lost over 1/2 a pound. We were so happy with both of their last weights. Now we're going backwards again. Right now, I'm really frustrated.

Kinnick and Carver will be a year old March 29th. They are so far behind where they should be. In fact, I'm not even sure where they should be. They don't really fit the normal Preemie adjusted age schedules because of their disabilites - blind/deaf and others. Such small things we take for granted make a huge difference in our developement. For example.. a blind child doesn't have a desire to raise his head because there isn't anything to see. So, my babies don't even have good head control. They want to look down all of the time. My babies need special queues just to change their diaper, feed them, or wipe their nose. Image a kleenex coming from nowhere swooping down and wiping your face. This is how it feels to a blind child. Or, imagine a spoon full of food suddenly being shoved into your mouth with no warning and you can't see it coming. These are things we don't have to think about when we have vision and hearing. We have a lot of work ahead of us. All of this is new and we have 2 of them to work with. My early intervention teachers have told me they rarely get blind/deaf children. Usually, you at least have vision or hearing. So, they are stumbling to help, but assure me they will do everything they can to help get the right resources and answers. It's just very overwhelming. I want to do everything possible to give my children what they need to have as normal as possible of a life.

Sorry this post isn't real positive. I'm just overwhelmed with everything right now. I'm update as I know more, but I expect that Kinnick will remain in the hospital until at least Monday.