We got home today (Sunday) at around 1 o'clock. It was so wonderful to leave the hospital with our Abbey, and walking into our home was heavenly. We came home to a very clean, organized home with new carpet throughout and best of all, Abbey has a beautiful, new bedroom! Very dear friends of ours came in the other day, painted her room pink, rearranged it and had a painter come in and turn her bedroom into a room fit for a princess (thanks so much Samua). It is amazing! We felt like we came home to 'bedroom extreme makeover' and words cannot express our appreciation for helping make Abbey feel so special and loved. Abbey loves her new room and it will be so nice to have such a special place for her as we will be spending a lot of time at home these days. We also came home to many packages with wonderful goodies. Abbey has a lot to do to keep her busy. You are all so thoughtful and creative! We got some beautiful hand knit hats and soft silk scarves for Abbey to wear once she looses her hair. We have been bathed with love and support and we are thankful to you all.
Although Abbey was happy to be home, she had a rough day today. She is having some stomach pain and overall just doesn't seem to be feeling very good. She has been through so much this week. I gave her a bath tonight and she did not want me to wash her. She has had so much done to her little body this week and she doesn't even want me to wash her because I think she is scared that something will hurt her. It is so hard to see her like this. It's hard at this young age for her to understand that all this pain is going to eventually make her well. My heart was broken today as I watched her struggle to trust us, that all these meds and pokes are to help her. Please continue to pray for us. Tonight has been one of the hardest nights for me so far and I think it's because now we are home from the hospital, so things should be so much better, but although our hospital stay is over, we still have a long way to go until this is over. My heart is breaking as I watch her be uncomfortable and at times in pain and not be able to explain exactly what is happening to her. We will have a break until Tuesday, and on Tuesday she will have a platelet transfusion and possibly a blood transfusion before her bone marrow biopsy and spinal fluid tap which will happen again on Friday. Please pray for us to be able to explain to her that we have to go back to the doctors on Tuesday and again on Friday (she will have to get a needle put back into her port those days). Please pray for strength for her and for her spirit not to be crushed that it's not over. Please pray as we are expecting her hair to start falling out soon. We know that is going to be hard for all of us. Please pray for God to carry us right now. We feel weak and know we can't do this without Him. Thank you guys. We love you.