Thursday, October 20, 2011
We came home Sunday morning and it was great being together at home with all the kids. It's so weird being without them all day every day. Jaylie sure misses them too. Jaylie felt good Saturday and Sunday she was tired. Monday we went back to the clinic and got the nulasta shot. Jaylie did awesome and was sooo brave. She can talk herself into anything. She talks herself into thinking it doesn't hurt and it will be fine. She's amazing. She was tired all that morning too and on the way home started feeling really sick . It was so sad and I felt so bad for her. When we got home she just wanted me to hold her. She did not want me doing anything else. I put her down for a nap and she slept for about 2 hours and woke up just fine with a lot of energy. She has been good this week just a little tired but not bad. She had an appointment today to do lab work and get more vincristine chemo. It was a pretty fast appointment. Her counts were good enough to not need a blood transfusion but her platelets are low and hemoglobin is low so she will need a transfusion eventually. Just not today. We have an appointment for Monday to do labs and most likely she will get a transfusion then. Jaylie loves and misses Breklyn and Crew when we go to appointments. Today on the way home she was thinking about Crew and said "ah,I wish I could see his cute little face. I can't stop thinking about him hes so cute". And she said it in a cute voice, it melted my heart. She is so sweet and is the best big sister. Weve been doing a lot of school work this week. She LOVES it! I am so thankful for get teacher Trudy. She comes again tomorrow to the house. Jaylie always gets so excited. She is doing an awesome job reading. She reads pretty well now and knows a lot of words. It's so fun to see and work with her on it. Briggs is still in the piku but is doing better. Hes off the oxygen now and is breathing well. They are just trying to get him to drink from a bottle. He has had the feeding tube since surgery. We are hoping he will be able to eat well and hopefully they can go home soon. Thank you for the continued prayers. We sure need them. There are still ups and downs, good days and bad days. This week I have felt worn out and am so sick of constantly cleaning and sanitizing. I could go on but I know it's worth it and it won't last forever. Thank you for your prayers again, we appreciate it more than you know.