Friday, May 7, 2010

Appointment after appointment

We were home a total of 3 days when we had to head back to Pittsburgh for a day of scheduled appointments!

The first one was our G-Tube. After waiting for what seemed like forever for just the nurse they came in told us that WE were going to change the tube. I have to admit I was a little nervous and had only seen Lynlee's hole once when she pulled it out and we had to take her to Ruby to get it put back in! ( I totally didn't blog about it because the whole thing was pretty uneventful but at the time we thought it was the end of the world I was crying, yelling at doctors, and it was fine!) But the whole concept of the tube isn't bad. Her hole isn't bad either. The site looks amazing we were actually told that Lynlee had the best G-Tube on the block. So I'll take that.

Our next appointment was with our team of Genetics. I had been waiting for this appointment for weeks. I was hoping they would say we could start Lynlee on cereal and baby food, and they did. We can give her up to 1 gram of protein a day. I was shocked! It that it? Are you kidding me? But after we got up and started measuring it was all that bad. Genetics also said her labs looked really good, and we had a good ammonia that day 45!

Our last appointment was the head ultra sound. Our pediatrician was concerned because Lynlee's head is on the rather big size. She is in the 97th percentile on head circumference. I thought the whole thing was rather ridiculous! She is a dead ringer for her daddy at that age. Same head shape and everything so I wasn't even worried, never even thought twice about it. I guess maybe I should have because the results came back abnormal. What? Are you kidding me? was my exact words when they called? Our pediatrician wanted an MRI done and of course I refused. I called our neurologist and after a few choice words with his secretary he called me back within hours! (I told you I was a pain in the butt like that, especially when it comes to Lynlee.) And he told me that a MRI was going to be last resort and that some children have water on the brain but it's not enough to worry about. He wasn't worried so I've yet to worry about it. We go back to see him when we go back to Pittsburgh on May 24th.

Even after all of that I was still super excited to be trying cereal even though I was afraid I would be batting zero!

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