Sometimes you have to know where you've been to know just how far you've come. Tonight I ran across these papers. I keep them in a clay jar that I have recipes in, so every now and then, I see them in there and I pull them out to look at.
The first one was printed out by Emmie's nurse on the heart floor in March of 2010. I can still remember that day like it was yesterday. I remember looking at that piece of paper and lots of thoughts running through my head, I didn't say anything out loud, just stared at it. I was the mom that couldn't remember to give my kid a vitamin. When they were sick and needed antibiotics, I would forget to give it to them! I'm staring at this med list, knowing my daughters life depended on me being able to follow it to a T! The pit in my stomach was indescribable. How was I going to do this? I desperately wanted out of that hospital, I wanted my life to go back to normal, I anted Emmie's life to go back to normal. But I didn't think I could do it, I wasn't sure I could handle this, maybe the hospital was the best place for her. Those thoughts of doubt that creeped in, I know was Satan. But in the quiet moments I could hear the voice of my Lord, telling me to be still and know that I am God. He gave me this child, and he would give me the strength to care for her the way she needed to be cared for.
Fast forward 7 years! If only I knew then what I know now! Normal? What is that anyway? HA! We found a new normal, one that involved lots of trips to Riley, and now MOTTS. A normal that included lots of medication, a back brace, surgeries, tests, scans, ultrasounds, xrays, MRI's. The latest also includes oncology appointments, and cancer scans. But I'm reminded every day of how unique Emmie really is, and how God knitted her together in such a fabulous way that no one can predict what will happen next....... or what she will do next, much less what she will say next!
Emmie is doing fabulous! She is cancer free!! She has not had to do chemo or radiation. She is getting scans every 3 months, and as long as those remain clear, she will not have to do treatments. She is currently off ALL medication!!! That is the most amazing thing ever! It was a day I never thought would happen! We were all so thrilled for her!
She is seeing her back doctor for scoliosis. It has gotten worse, she is getting fitted for a new brace, and having an MRI of her back in a few weeks. We will also see the neurosurgeon again about tether cord surgery, which will hopefully happen in November. After that, she will need one more back surgery to correct the curve in her back, and then hopefully we will be all done with surgeries!
She continues to have check-ups with cardiology and nephrology. All seems to be going fine with her kidneys and heart. Her aortic stent will need adjusted again, and that is something that will continue to be adjusted as she grows.
She had her 6 month post op check up at MOTTS a few weeks ago and they were very pleased with all of her progress! She was given the all clear by her vascular surgeon! Praise God!
All in all, things are great! Will she continue to need doctor visits and surgeries, yes, but when I look back at just how far this little girl has come, I'm OK with where we are. She is my warrior princess! She amazes me every day!!!
Thank you for following us on this journey! And thank you for the support and prayers!
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