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Sunday, January 11, 2009


We started to wean Megan off of the ACTH as it is not working anymore. It should take about 6 weeks to get her completely off as it has to be done slowly so her body starts making the hormone again on its own. Just lowering it a little bit (.01) has made her look less swollen and she is not getting red like a tomato anymore. I started to see that and thought hypertension? It is a side affect. We see the neurologist on Monday again. When we spoke last week I told him how my chest hurt and there has to be something else. He was silent and said the ACTH was the pull all the stops out treatment. I left it at that until our appt so maybe he can reach for something for her. I think he was really beside himself with the news too - I could hear it in his voice. Today the boys were invited to a birthday party at a friends house and it was a paintball war - there are woods on their property and they have made it specifically for paintball. Pat plays too - all the dads and boys play. I was debating on taking Meg and decided not to. I felt like it would do me good to go and talk to some friends I never see and try to relax and have a good time. It was the wierdest feeling to be there. I felt like I really had nothing to talk to anyone about and I was so distracted and I COULD not enjoy it. I got dropped off before it was over and felt better back here with Megan doing what I do.I can leave and go out but I cant run away from my own thoughts - I am crying out of frustration and hopelessness which is something I dont want to have. I wonder what is going on inside of Megans head. Are there words that she wants to get out but cant? Does she imagine things like other kids or is it just quiet inside her head. Last night I had a dream that she was repeating words after me - like cat and mom for the first time. It seemed so real and we were both so happy in my dream. Of course when I woke up I remembered that it was not real. I have been scanning the web for cures again - looked up vagus nerve implants, but you have to be 12 - why not 2 if it will save her brain from more damage? Medicine and science sucks more times than it is good it seems to me. It is 2009 and the same things from 25 years ago are still wrecking our children. Wrecking my baby. She is so pretty and so loving - to look at her lying there you would never know anything was wrong, but it is - unfixably wrong


Colleen said...

(((Hugs)))I wish I had some answers or helping words!

Rox said...

Have you herd of Ketogenic Diet it dosent involve medication only a strict diet plan

Kristi HOGG said...

Terry If you need me to come be with you all you have to do is call me. I will fly down there in a heartbeat. YOU ARE NOT ALONE!! I feel your helplessness, I feel your PAIN. IT SUCKS so bad to watch and have NOTHING TO DO!! I understand how you feel when you are around others and find yourself with nothing to talk about.

Kristi HOGG