I finally have a few minutes to post. I swear the days are getting shorter, I seem to have less and less time to do what I need and want to do. So Anna and I headed off to Cook's on Thursday morning. She slept the whole way there and so I thought it was going to be a good day. Um- not so much. We got there and got registered and to our room relatively easily. The staff was all quite friendly and the accommodations could not have been better. I have no complaints as far as that goes. My dear friend Amy came to visit and brought me lunch and it was so good to see her! Anyway, about 1:00 they came and got us and took us to get Anna wired up for her EEG. This was the most horrifying experience I have had with Anna yet to date and I hope to never repeat it. I had to literally hold her down for 45 minutes with her thrashing and kicking and screaming and crying while they mark her head and then apply glue and metal electrodes and finish it off by drying the glue with an air gun. It was horrible. Then they attach the 25 wires to a box which we had to carry everywhere with us. I use the term "everywhere" quite loosely because we could not leave our room. There was a ceiling mounted camera in the room which followed us around the room to record Anna's behavior so if she had abnormal activity in the brain waves they could see how she was acting at the time. Needless to say 24 hours of that was enough for us. We did not sleep much at all. I know some kids have to stay 2 or 3 days- I can't even imagine. I basically held her most of the time because she couldn't crawl around or anything. We watched more Baby Einstein than I ever care to watch again. That hell finally finished and then they had to rip the glued on electrodes off of her head. That was great fun also. It is days later and we are still picking glue out of what little hair she has. Then it was time for the MRI. They tried giving her sedation rectally but it was ineffective on her and so she ended up getting general anesthesia. I watch adults get intubated day after day at work but it is such a different ballgame when it is your own baby. So they intubated her, I gave her a kiss and told her I loved her and then I had to leave her. I went back to our room and waited. She finally came back about 2 1/2 hours later. They brought her up in a wagon and she looked so cute lying there in the wagon all cuddled up with a pillow- she was still quite sleepy. Then we met with the dietitian who changed our regimen up again in hopes for more weight gain as Anna is still classified as failure to thrive. We are back to 1/2 Alimentum & 1/2 Goodstart with the addition of Duocal which will boost the calories more than the Polycose did. It is also more concentrated so it is easier to mix. The dietitian was very nice. She is actually friends with my friend Kathleen so I feel I can really trust her. Oh, I forgot- on the first day when the nurse practitioner for the neurologist came to see Anna she said Anna has 2 horrible ear infections so it is back to another round of antibiotics. That should be great since we are already battling thrush. I swear it just never ends. Anyway, we finally got out of there about 5 PM on Friday and headed home right in time for 5 o' clock Ft Worth traffic. I was up most of the night Friday night with Anna and then worked all day yesterday. Kenneth let me sleep in today and it was so nice, and so needed. I feel human again. I am supposed to call on Thursday to get the results of the EEG & MRI and I hope the FISH labs are back by then also. Anna has been a trooper once again. She is crawling better and better each day. Carly has been great also. She cracked me up last weekend. We went to the grocery store and were leaving when I got pulled over for speeding (imagine that). I begin to pull of the road and Carly starts screaming at the top of her lungs. She screams over and over, "I don't want you to get a ticket. I don't want you to go to jail. I don't want you to get a ticket. I don't want you to go to jail..." I roll my window down as the officer approaches my car. Carly is still screaming and as she sees the officer she raises it a few decibels. He is looking at us like "What the hell?" I said, "Um, she doesn't really like police officers so much." I;m sure he is thinking at this point- what have you done that she is so afraid and that she thinks you will go to jail. I explained that she is afraid of her own shadow. I guess she has seen too many episodes of Cops or something. So she continues screaming and the officer looks at my license and insurance and asks me to please slow down and lets us go. I am sure he was like- I'm not going to give this lady a ticket, I'll have to listen to that kid scream even louder. Thanks officer!!! Well, although I did not teach Carly this behavior I'm thinking it might be reward worthy- maybe it will work the next time I get pulled over, too. (If there is a next time, wink, wink) Kenneth went back on duty Friday. The ortho said his finger is still broken but released him anyway. He said it could take a long time to heal. He was glad to go back and I am glad to have our crazy routine back. It was weird having him home all of the time. So here we are on Sunday and finally relaxing. I am off until Tuesday and plan on chillin' until then...
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