Wednesday, May 28, 2014

Delaney's big week of appointments and test.....

Delaney continues to write her story, with smiles, laughter, hugs and kisses, but those emotions come hand in hand with the everyday struggles accompanied with frustration, tears, and sadness. However, Delaney fiercely, keeps moving forward. The hospital trips are less frequent but the treatment and care for Delaney at home is still very delicate. The remainder of this week and through mid-week next week Delaney will have close out tests on her vital organs and body functions to see what, if any damage has been done from the chemotherapy and radiation. Last Friday Delaney had an appointment for IVIG to help rebuild and support her immune system. Today Delaney had a GFR, to test the function of her kidneys and see how well they are filtering her blood. For this test Delaney had to lay completely still for 30 minutes while she had constant x-ray images taken of her kidneys. Tomorrow she will have a audiology exam for her hearing, and the hearing is directly effected by the chemotherapy and radiation she has received. Next week Monday, is another big day it will be Delaney's first MRI after the end of treatment. Delaney will have an MRI of her full brain and spine (which she must be sedated for 2 hours). Next week she will be back at UCSF for a blood test to see if she has any T cells and how well they are working to fight off infection. Delaney is standing, walking, and playing on her own without assistance for a few minutes at a time. She is doing outstanding physically, but still has a lack of balance and coordination. She is still very vulnerable to fall and hurt herself without notice. But she is enjoying her freedom. However, Delaney still is not showing any interest in foods or any other liquid than water. Her food aversion is very serious, and can take any where form 6 months to a year to relearn that food is good and ok to eat. She is currently working with OT for her food therapy. Delaney's new fun thing to do is play play dough with grandma. For hours at a time. Delaney also enjoys going in walks around the neighborhood with her brothers, mommy, daddy, grandma, and grandpa. The days are extremely exhausting, sad, and frustrating, but we have much to be thankful for and much to look forward too. It has and continues to be a TEAM effort from all to help fierce Delaney. Though the woods are thinning, she is still not out of the wood just yet. 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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