• Uncategorized

    Update!

    It has been 2 weeks since my last update and figured it was time for another one! First we’ll start out with some exciting/good news! My sister got married last week and I officially gained a big brother! It was a great time! Excited to see what the future holds for Ashley and Andre 😊 enjoy the beautiful pictures from their day courtesy of Prairie and Wild! Now for me, I think my leakage has stopped! After we restitched my incision, the fluid was still leaking on the inside and was pooling by my incision. But I think the pooling has completely gone away which hopefully means it has stopped!…

  • Uncategorized

    Stay Strong

    Today’s update.. I don’t even know where to start. This morning I got up and felt a lot of wetness under me, so I had my nurse look at my back and we discovered that my back had a clear fluid leaking out of it. Knowing it was probably spinal fluid we called the doctor right away and were informed to go to the ER. My mom came home from work and took me to the ER and we spent the afternoon there. The neurosurgeon CNP was there and decided to staple my back shut where the leak was happening; that stopped the leak while I was laying down but…

  • Uncategorized

    The Journey Bigins

    Today was surgery day! We arrived at the surgical towers around 7:45 AM and didn’t go in for surgery until 12:45. From what I’m told surgery lasted 40 minutes. There was no hole in the catheter, he said when he cut me open he pushed syringe of saline to see where leak was but that it went in just fine but noticed it was pooling right outside of the canel in my back. So he made that part more stable by adding epoxy and said it was kind of a hard push but everything went where it was supposed to! I received my first dose of Spinraza! So in two…

  • Uncategorized

    Injection Day

    Well I have always been a complicated woman when it comes to anything medical related and today was no different! Today was supposed to be injection day but after getting in the radiology procedure room things took an unexpected turn. The doctor got my port accessed right away with no pain. With Spinraza they have to remove 5cc of spinal fluid and replace it with 5cc of the drug (Spinraza), so the doc tried to draw the spinal fluid but was unsuccessful, so they tried to flush with saline and it wasn’t flushing properly so the neurosurgeon was called in for a consult. He came in and tried to draw…