Tuesday, February 8, 2011

Megan Marie

video
I feel so bad for Megan lately. For the last 2 months something has been off with her.  More seizures, more tiredness, less appetite, no energy. Today she literally can not walk. She got up and tried to walk and fell down right away. She has fallen I think three times today here with me. I took her out to eat and she could not put one foot in front of the other to walk 20 feet.
I am really getting worried about her. I wish in a way that we could put her in the hospital and have her fed through a tube. I also know how much she fights that and it is not fun. Please keep her in your prayers.
I found out that she wears a size 1 in jeans. Wow now that is tiny. These are the Hannah Montanna jeans. I mean no female needs to be that small. OK so today I had her dressed in this gorgeous red sweater and her black size one jeans and a black tutu that has silver sparkles. Oh yea I love my tutus for her. Part of the reason I love tutus is they really are cute. Second of all is they hide the bulk of her diaper and help her just look adorable. I have bought her her this black one, a purple one, one that is a deep red with black lace and ties up the front looking like a shoot forget the name! Like a pirate barmaid lol. Hey a winch lol knew I would remember it. I am trying to think what other colors she has. I am going to try and find a pattern on making them so she can have all kinds of colors.  I love Target for the tutus they are the cheapest there even not on sale. I pay a lot even then but she has worn these for over a year and wears them each like every other week. Megan is like a real sized barbie doll.
I am not going to post as much tonight I was up all night last night and just took a short nap from 9 to 10 when I went to cuddle with hubby. I passed out about the time hubby was wanting to wake up and talk. My back is hurting tonight from having to lift Megan into the Explorer and pick her up off the floor a few times and lifting her into bed.
I still want people that complain about everything to come stay with me. I want them to look into Megan's eyes as she is having a 3 minute seizure, not breathing, lips turning purple, eyes full of tears and her body jerking so hard you can literally hear the muscles strain. Having her come out of the seizure and gasping for breath, drooling all over the place, looking at you with terror in her face, having her be totally confused. Then they can go back to their quaint little life and think about complaining.

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