HOME TO STAY......

Last night was a very rough night for us. Kourtney was restless and fearful. WE medicated her and it still didn't work. She woke up and sat on the couch pale and listless. She began shivering violently and became very sleepy her temp was climbing......it scared me. We gave her Advil and Tylenol and in an half hour she was on the computer talking on Skype with her Saskatchewan Grandparents and got an facebook account for my mom in law. Perky little Kourtney was back.

She is now resting on her new recliner chair, actually she is snoring. The effects of her new pain meds make her relax. Sleep is good for her. This morning when I was getting her dressed, I made her look outside and look at our amazing backyard, and think about the fun she has had having a pool, I want her to look forward to her Grandpa coming out to visit, Christmas and going back to her old school with all her friends. Kourtney needs something to live for. She needed her uncle to tease her this weekend. She got him back by buying a movie with his account number from iTunes. She needs to be normalized into a very abnormal life. She can't be felt sorry for, she needs to be embraced and treated like every normal 11 year old needs to be treated. She has an awful terrible disease but underneath is a strong willed, sarcastic, perky child.

This morning I talked with Kourtney's plastic surgeon at length. He was very aware of my frustration yesterday and was not sure what to do. He told us to stay home. I told him I wasn't managing well at home but by being at the hospital I wasn't dealing with all the issues at home. I have to stay strong and try to balance life plus look after Kourtney's needs. Emotionally, I am weak but I know that the strength will come again. We are going to see him once a week at the hospital and do her dressings there. I would feel better if someone was helping me evaluate all of this. He agreed. He hoped that Kourtney trusted him and she felt comfortable with all of this. I know that Kourtney does because I do, she can tell who I trust and who I don't, just by the look in my face. So if you ever want to know what I think of you just ask Kourtney because generally she can nail how I am feeling.

A lot of people ask about the Bone Marrow Transplant that we were so HOPE ful for. Right now it is on hold, I have no idea what is going on with the research either, as I always hear conflicting stories. There still is a part of me that feels hopeful that one day it work for her. Maybe that it just a mom being hopeful, but I truly believe that down deep that God is going to work this out for Kourtney. I don't know how, I don't know when but I do believe that this will happen. I don't think it is a coincidence that Shaelyn is a match, I just believe it will be God's timing. I just have to continue to be faithful and rely on the strength that only God can give me.

I just heard the song, Mighty To Save. I love the line that God can move a mountain. I sing it to Kourtney and instead of singing move mountain, I sing "cure EB". She smiles and than tells me I am weird.....I love it when she is perky like that.

She is still sleeping, I am hoping she sleeps tonight.

Janelle