It's been awhile... but I need to do this.

Why Red? Humm... I have been pretty angry lately. Rightly so I suppose. I have been doing everything I can to stay positive about everything. Since I started this blog I used it once. Going to change that and start getting out my feelings, instead of holding them all inside. I try to pretend that I am "fine". I'm not. Life stinks right now.

My daughter Jessi... the one with the spinal fracture in the last post has been diagnosed ( and here is the part where I tell you I suck at spelling so forgive me) with High Risk Pre B Acute Lymphoblastic Leukemia. aka High Risk Pre B ALL. What does this mean? It means she is in the fight of her life. Nothing new. The girl has been fighting all of her life... Which is Awesome considering I get to keep her with me as long as she is. Selfish, right? I don't think so... God gave her to me and I have been blessed. I want to keep her with me for as long as God doesn't need her home. I'm sure I will disagree with his timing if it's not before I am already gone but what parent wouldn't??? She suffers a lot with the chemo treatments. Which makes her Dad and I suffer. It all stinks.

Speaking of suffering.... My other kids. I know this has been the hardest on Megan. ( sorry Rich and Laurisa) but I know being Jessi's twin it must hit her the hardest. She must wonder sometimes why... and wonder why Jessi had to be so sick all their lives and not just be a real "twin". She takes a lot on herself and I worry like crazy about her. But she is sweet and calls/texts me a lot and does everything she can to try to make things easier. I don't like her feeling like she has to do it all.... but I do appreciate everything she does do.
My son Richard has really been stepping up lately too. ( Thank you Rich) I love you both.
Thank you for taking care of the stuff at my house up home. For calling and checking in and doing your best to do what you need to be doing as well.
My Mom has recently found out that her heart has gone back into A-fib. High chance for her of having strokes as she has already had two.. worrying about her. Megan does a great job of helping her Gram out. And Dad.. well I have not seen him since July, I miss him terribly and he has been asking for Jeff and I. Enough said. I will not go there today more than that.

Jessi has been having problems with her feedings... she has a Mickey button. (G-tube) The chemo has torn up her gut and she cannot keep anything in. Her bottom is a sore, sore mess. They changed her to a pre-digested (mostly) formula and giving her pro-biotic, anti-diarrhea meds and slowed the feeding pump down to a crawl. It takes four hours to give her the equivalent of one feeding. So she is on the pump 24/7. Her next step is total IV nutrition to give her bottom a chance to heal as well as her stomach.

We go back to clinic Monday... oh, tomorrow. Decisions will be made then. Friday they said she will probably have to have another transfusion as her HBG was down to 9. Usually the don't till its 8 or below.. but her heart doc wants her at 10. So it will probably be a long, long day tomorrow. Her lungs are junking up again...hopefully we will get to bring her back to the apartment instead of her being admitted...but whatever she needs. That's why we are here. Well, I have to run for now... Time to get her up and dressed. She would lay in bed all day if we let her....but I think it's good for her to get up and move a little bit...even if it's just to her bean bag in the living room to watch her Blues Clues. :)
More later... and if you made it this far.. thanks for caring. :)

*Sighing*

    I am so not sure where to even begin. I am in the middle of life... Taking care of my parents, my handicapped daughter and my grandson. I am only 40. I don't know what I am doing most of the time although I don't think I give myself half the credit I deserve.
   Dad went to the Nursing Home about two months ago. Was one of the hardest things I have ever had to do. But he is safter there as my Mom is not know for her patience and is sick as well.
  Right now.. my daughter has a compression fracture in her spine and is in terrible pain. The doctors don't offer much help... but I believe that is because they see her as a lesser person. She is 17 in years but about 1 1/2-2 yrs old in ability. That is all she will ever be. But she is my girl and a wonderful child for all her issues and I think she is WORTH having every chance she can get.
   Out of my four children only one is going to graduate high school. Well, Jessi will as well... but that is a generic diploma. I feel that Megan has a lot of pressure on her to be the "good" kid. Which she is. But it's not fair that she has to live in the shadow of her siblings mistakes.
    If you cannot tell.. I have been depressed lately and trying to work things out in my already jumbled head. Decided I better get it down on paper ( or blog it) to help me get through it all.
    Well, that is about all for now. I have to much to do to write much more. I will be back around though to fill in all the blanks.
~be kind to yourself... if you can't who will?~