I would say today was definitely a good day!! Addie is still having blood in her stool but it has slowed down quite a bit, praying that it will soon be gone! She tested positive for the rotavirus, a virus that attacks the intestines and causes vomiting and diarrhea. It is a self-limiting virus and Addie will be able to fight it off on her own, it may just take her a bit longer than the average person! It is unlikely that the virus alone caused the large amounts of blood in her stool but it definitely didn't help matters! The doctors don't seem overly concerned about the blood as long as it continues to slow... It is likely still her body trying to heal from the chemotherapy! All of Addie's blood cultures remain negative but she continues to sporadically run fevers. It is unclear as to why this is happening but it is possible her fevers are from the virus her body is fighting (I am praying that is the case and that no terrible infection is lurking somewhere)!
When I say that it is day by day here I really mean that... One day we think all is well and the next day we get bombarded with bloody diarrhea! Yikes!! The good news is that Addie is far better than she was last week and the week before! She looks more like herself and I even got some real smiles today and a few games of "I spy" out of her! She is pretty reluctant to talk and sleeps most of the day! She is off of all of her IV sedation medicines and is now only on oral medications. They will continue to taper her oral sedation meds over the next week or so! I am hoping that the less sedatives she gets the more Addie I will see :). She is still feeling pretty crummy but I would say today was better than yesterday, not as much vomiting! It was so good to see that smile tonight, a real smile!! I also got to see that ornery little glint in her eye... Slowly but surely my baby girl is coming back to me!!
The longer we are apart as a family the harder it is, especially for my Gracie girl. She really misses her Mommy and her little sister. We all miss our family time and our life at home. However, despite the 31 days we have been away from home, I continue to feel connected and thinking positively! This truly is the power of prayer... He gives you what you need and what I need is to feel close to my husband and to my girls!!! I definitely long to be under the same roof as all three of my babies again... We aren't designed to be apart!!! I praise Jesus for keeping my heart full, full of wonderful memories of when we were together and full of hope for our future together with Addie HEALTHY!!
Here is some advice from a girl who was basically stripped of every coping mechanism she had... I realized my coping mechanisms only worked if the end result was in my favor and my daughter getting stage 4 Neuroblastoma was definitely NOT in my favor!!
Enjoy the time you have with your family... It is so easy to get caught up in work, cleaning the house, and all of those tasks of daily life that sometimes the really important things are missed and taken for granted!! Each moment spent together is precious, and those little things that we stress about take our eyes off of what is truly important... Him!! The more we direct our eyes to Him the more He opens our eyes to the wonderful blessings He has given us here!! It isn't about the quantity of time we spend together it is about the quality of that time!! I have said that for years as a working Mother and that statement reigns even truer in this place I find myself now! The chores can wait, the house can stay dirty, to heck with exercising (who likes that anyways) because Momma needs to enjoy her family... That is how I wish to spend the rest of my life! I may have to seek therapy to rid myself of this OCD and clean house obsession (for those that know me and see my crazy anxiety in messiness) but I am going to actively try to never let life blur what is really important!!! It isn't that I took life for granted before it is just that I didn't realize how precious the life I had was!! I see now that there is no point in worrying and having anxiety over things we can't control... How liberating to give up that control!!! What we can control, for those control freaks like myself, is the time we spend with HIM and the energy we put into building our relationship with Christ!! Here is to a new coping mechanism, Jesus!!!
Go Team Addie... Prayers for clear stools, no more fevers, no infections, healthy blood pressures, a healthy heart, happy kidneys and a HAPPY Addie Bean!!
Addie enjoying music therapy
