6 months, 3 weeks, 2 days since diagnosis
The Pedialyte does not seem to have helped. If anything, Riker is worse. And the screaming is taking its toll on all of us. In tears last night, my mother told me she could not handle Riker. All the crying is too much for her. She expressed to me how stressful helping out with the girls has been for her and that she's at her breaking point. I am very grateful for all she has done but I am doing everything in my power to parent and handle my girls just as I would if I was in my own home without help. I just don't know what else I can do to make this easier on my parents.
I know they do not like listening to Valentine be disciplined. A lot of her behavior has gone unchecked for a very long time. She lies and is spiteful. She has not had consequences that she can understand and learn from. She's getting better every day but it is tough work. I am so discouraged and feel like I'm being pulled in two different directions - I want to be a polite house guest but I cannot ignore that my daughter needs structure and discipline. I can tell that she feels safer with me and my boundaries... they never change.
I do not imagine we'll have our own home anytime soon. (On top of everything else, the roof blew off of our old house today - that'll help sell it :( ) I'm trying to talk through my concerns with my parents and keep us on the best terms possible. I am trying to make this work because it has to.
Things will get easier when Riker is feeling better and back to her normal self again. Tensions won't be as high and things will calm down. She really is the easiest baby ever when she's feeling her best. That's what is so concerning about this - she is not clingy and is always happy unless something is wrong. So.. something is wrong.
Tomorrow we go back to clinic and hopefully we'll have another plan of attack. In less than 2 weeks, we'll start to wean her off the Cyclosporine and that should help, too. Hopefully, she'll start feeling better and we can start focusing on more normal things like getting early intervention to work with her on hitting her milestones.
I am praying for you and your entire family. There is a beautiful country song called, "I will love you through it" (i believe) and everytime I hear it I think about you and your family. I wish I could help you in some way and give you guys a big hug. Sending prayers and New Year well wishes your way.
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