Wednesday, November 27, 2013

Tuesday Recap

Delaney continues to write down another day to her story, no day is ever the same. Yesterday Delaney was up at 4 am happy and energetic. She made it through the night without vomiting. Yesterday morning Delaney asked for some food to our surprise, it is difficult to get her to eat anything, she more or less tastes things. So Daddy got her some cereal, she sipped the milk and then said she was done. Took her out of her high chair and then she said she wanted some banana, and she actually ate 1/3 of a banana and kept it down, and she actually had a craving for chocolate milk again, she lost her craving for chocolate milk because she had been vomiting so much at the hospital and home while drinking it she no longer wanted it. So it is nice to see her want to have more. After breakfast Delaney played with brother and Mommy and Daddy had to get things ready for another out patient chemotherapy treatment for Delaney in Oakland. The appointment today consisted of going over the plan for the next 2 weeks, for appointments and tests. The way it looks now Delaney will have to get admitted for a blood and platelet transfusion later this week, her last out patient chemotherapy in Oakland next week, and the following week Delaney will have a appointment almost everyday a lumbar puncture and brain/spine MRI both requiring sedation, renogram, and hearing test. Delaney's chemotherapy appointment went ok, she was hungry again, Mommy packed some food, pudding, apple sauce, and juice. All food easy to eat. So Delaney wanted some pudding while waiting for the chemotherapy to finish and did a great job eating. Both of her lumens in her Broviac again, are very sluggish and hard to flush, so we decided to have the lines TPA, to remove any clot. Especially since the holidays are a couple days away and we don't want any issues to have to go to the hospital. Once the nurse put the anti coagulate in the lines they must sit for an hour, during that wait Delaney watched Toy Story, was in good spirits, and vomited all that she had just eaten. Just another very frustrating up and down in the day. We were happy to see her eat, have an appetite, but then have it all come back up is difficult. As a parent it is very difficult, and sad to see Delaney get to a point where vomiting is just another routine part of her day, and see her accept it. But then we remind ourselves that is the fierce that Delaney has, and we love it. She can vomit and does not effect her mood or attitude. Delaney need a full clothes change, the nurse removed the TPA, and it was time to head home. Once home, it was back to catching Delaney up on fluids and feeds through her feeding tube. Tonight we double her GCSF doses for her injection into her thigh, to help ramp up production of her white blood cells. It is a lot to inject without her moving. Delaney looks and is doing great, her attitude is inspiring, her motivation to walk and crawl is motivating and her love drives us. Thank you for all the prayers, love and support. As always .... GO TEAM DELANEY!

"And though she be but LITTLE she is FIERCE!"

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