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Thursday, March 15, 2012

I can look at Megan and see that she has gained a little weight!  This thing is working.  My scale is possessed I think so I can not get her real weight but we moved up a size in diapers.  Her butt cheeks were sticking out.  I am so inspired by the success so far and can not wait to see the surgeon at the end of the month for the real results on the actual scale she weighed in on the day before the surgery.  He said we would do a couple of trials before permanenty implaning but i am hoping that he will see the immediate benefits and pull the trigger so we can move ahead to a permanent fix.  This is actually the first treatment that has been really successful for Megan out of any!  At first her seizures increased a lot but I think it was because her brain was getting nutrition and everything was firing - something new for her.  They seem to have eased up some now that we are 3 1/2 weeks in.  I am not certain of that theory but it seems that way.  She is much more alert and her skin pallor looks beautiful.  No rings around her eyes and sickly pale face.  She seems to have a glow in her complexion.  Nutrition is an amazing thing.  Not a disease cure but certainly helpful.

On the flip side this is something I had to express to someone regarding Megan's disease and the dynamics that go along with it that we dont like to think about.  Hard to write this but in summary it says something of where we are now and where we have been to....

The face of her disease has always been this severe and we do not know what tomorrow will bring for her. Since her official diagnosis right before her 1st birthday we have known this and have had a few very close calls when she somehow rallied back - each time the disease taking some more of her though. It is hard to have to explain that to kids.  its hard to tell an adult. Definitely hurts but we have to deal with the hand we were dealt. We dont spend our time anticipating when it will happen because then we will be wasting the time she has on sorrow that will rear its ugly head eventually. James and Ryan know that every day she is here is a gift and when she is tired and God is ready to take her home - he will. And we will be sad but she will not hurt anymore and will finally be free to run and play with all the other angels and will be with family there that will love her until we see her again. It was awful to have to make them realize this - devastating actually. ...she is the best thing that ever happened to me. As Ryan puts it we are lucky God picked us to have Megan instead of a family that would not care for her the way she needs. In that respect she is very fortunate! She has shown me the true meaning of unconditional love in its purest most innocent form. She does not have a bad bone in her whole body - she knows how to give love and to receive love and she gets and gives plenty of both. I think so much of it that it has kept her here long past her time. A psychic who does not know me or anything about me just blurted that out to my sister at a business function they both attended....she did not know my sister either.

She told her "your niece has been ready to cross over several times and was at the bridge but did not - because of the love her mother has for her she is staying." I realized then that I had to tell Megan that when she was tired she could go and I would be okay - we all would. I dont know what she understands but I told her in case...

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