Saturday, March 29, 2008

Charlie's progress so far.

There's a lot to write about when you slack on blogging when you have a child as "adventurous" as Charlie. LOL She sure has been through a lot, but I'm trying to remember as much as possible, for her sake, and for mine. And because there are a lot of people out there who can benefit from reading about our experience. I know I read every blog I can get my hands on if the child is even remotely similar to my little girl!

When Charlie was born, she didn't have a single reflex. Nada. She didn't cry, suck, swallow, cough, gag, yawn, blink, startle, or sneeze. She just laid in her little bed and occasionally moved and arm or leg in a slow, very unmotivated way. It didn't even occur to me that she had brain damage. I just thought she needed a little time and that she was going "snap out of it" and go home with me any day.

We found out when she was 9 days old. I called the hospital before I went over, just to check on her and the idiot NP told me about her MRI without any empathy in his voice, like he just told me it was raining outside. "Yeah, her MRI showed she has brain damage." All nonchalant. I started sobbing and asked, "well, how bad is it?" "Well, we don't know, you'll have to talk to the neurologists about that." He couldn't have waited until he could see us in person!? When we could talk to the doctors!? No, he told me that, with no information and we had to wait an additional 2 days before we heard anything else. I didn't even realize that brain damage had different severities. I pictured a brain dead child who was completely absent, physically and mentally. Not the most compassionate people there, I tell ya!

So Charlie started regaining her reflexes, one by one. I don't remember exactly when, or in what order. I think her suck came back first. She was 3 weeks old and on the way home from the hospital I got an excited call from the OT there. She sucked 4 times! Sure it doesn't seem like a lot, but this child previously just laid there with her mouth completely fixed and her tongue completely still. And all the sudden she could suck! She quickly got better and better with it. Soon she began to cough, sneeze, and yawn. Now some people don't consider these to be reflexes worth noting, but to me, they were significant progress.

At about 6 1/2 weeks, she began to cry! I was so excited and felt so privileged because I was the first to hear her. I went and asked the nurse if Charlie had been crying and she got a confused look on her face and said no. I guess that would be a confusing question if you were taking care of a baby that had never cried before. So she did it for me. :-)

Charlie had 2 swallow studies in the hospital both showing that she *could* swallow, just not very well. The 2nd showed significant improvement over the 1st.

Charlie came home on November 28, 2007 with a feeding tube, an apnea monitor, and a suction machine. We were actually very lucky because there's was talk of more than that. For a long time they thought she would need a trach, but she was coughing well enough to clear her lungs, so we just had to suction orally and nasally.

Since she's been home, she's improved in all areas, some quicker than others. She's blinking, startling, and has her gag reflex now. Swallowing is still her biggest hurdle. Her speech therapist explained to us that swallowing is an extremely complex movement and that's why it's taking her longer to figure it out. But she's confident that she will. She says most of the kids she's met outgrow the need for suctioning. So that's very encouraging!

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