Elizabeth Grace - Update

Day 301

Well, they took the paralytic off yesterday and Elizabeth started "moving" right away. They were able to reduce her vent settings some because she was "fighting" the vent. It has been a balancing act all night between her pain meds and vent and trying to find a happy medium. She also started running a fever last night and it has continued this morning. We drew blood cultures but haven't heard anything yet. Her bilirubin and liver enzymes started going back up today so the decision is to start Rituximab this morning. We are going to give her half a dose and run it very slowly, if she does well we will try and give the rest of the dose tomorrow. I hate that she has a fever going into this and on top of everything else going on. Please pray it is not any kind of infection. I have been holding her hand, her skin looks and feels so much better, it is amazing. also, her Eos have remained ZERO through all of this-- PRAISE PRAISE GOD! It's hard to think back to all the pain Elizabeth went through battling that eosinophilia problem and now that it is finally over after NINE months and we have ANOTHER problem! I literally get through each day completely TRUSTING in God and BELIEVING He is GOING TO HEAL HER! She does still have some blood in her fluid. My prayer today is that she JUST GETS BETTER! She can do it, God can DO IT, Believe in them! There is a new doctor here that has been following Elizabeth the last 3 weeks. She told me this morning, " i Have learned two things about Elizabeth, She doesn't give up and she does it her way!" She also said it is amazing how many people in this hospital love her, care about her and are working so hard to help her. I will let you know how the Rituximab goes- Pray Perfectly! Keep Praying Keep Believing Love, Michelle

Later Update

Day 301

Update  10pm  So far so GOOD! She started the drug at noon and was premedicated very well. She hasn't had any complications so far except that she has continued to have fever all day. Nothing has grown in the cultures. The vent is down to all the lowest settings except for one number which we will work on tomorrow. She is handling it very well and her lungs are doing great. Still alot of fluid coming out of her belly. They decided to go ahead and do a MRI in the morning while she is sedated and see how her lesions and swelling compare to the last MRI done after her seizure. Pray it looks Perfect! If all is still going well we will probably give her the rest of the Rituximab. Thanking Jesus for today and Praising God for Hearing our Prayers. May it be His WILL Elizabeth is COMPLETELY HEALED on Earth! I want  to thank you all for Praying for our Baby. There is nothing more real than watching your child fight for her life. Tonight I would like to ask all of you who are praying for Elizabeth to lift up your prayers for our M7 buddy, Alex instead. They found out today his cancer cells are up to 82% and he just had his second transplant. He is only 3 and his parents have the most unwavering faith. They are trusting in God for his healing and I ask you to also. His site is www.caringbridge.org/visit/denton. We also found out today another little friend of ours has relapsed right after transplant. His name is Clay and he is five. Pray for him. Dax's BMA showed no cancer yesterday but they are waiting mRD results and found some abnormal cells in his arm. Alot of children needing ALOT of prayers. God can HEAR and ANSWER them ALL! Keep Praying Keep Believing Love, Michelle