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    2019 Walk N Roll

    Friends, The Minnesota Chapter of Cure SMA will be holding its first ever 2019 Walk-n-Roll in Sioux Falls, South Dakota on September 28, 2019! Help me make this event be as big as it can be and help us find a cure for SMA! Please join my team and walk with my family and I in September! http://events.curesma.org/site/TR/Walk-n-Roll/General?team_id=7556&pg=team&fr_id=3571&fbclid=IwAR2VPEbzCcbJNM_H4hVtQjxcWbIvx77_1BltmTbpsTOIKPUPnf3qg73YqMI

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    Injection 3

    Spinraza injection #3– Complete ✅ Big Mama and I went in today for my third injection and we are happy to report that everything went great! The procedure takes about 10 minutes and then we’re out the door! I am now done with my every 2 week injections and the next when will be in a month (Aug 23). Then after that they will be every 4 months.

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    Injection #2

    Today was injection #2! Kalin and I are ecstatic that everything went off without a hitch! They were able to aspirate the 5cc of spinal fluid and replace it with Spinraza! The procedure was done in interventional radiology since the last one didn’t go as planned. Now that everything went a-ok, we should be able to do the rest of the injections in clinic. So far feeling pretty good, no pain at the injection site. Hopefully from here on out we will start seeing the gains that can be made with the help of Spinraza!

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    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!…

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    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…

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    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…

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    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…

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    Two Weeks Post-Op

    Tomorrow will mark 2 weeks from the reservoir placement surgery! Recovery has not been easy to say the least! I am still feeling a lot of pain on my left ribcage where the port sits. Because of this new port and having an incision on my ribcage, I haven’t been able to do my vest therapy. I have been having increased secretions and not feeling 100% on the right side of my lungs. I went to the doctor to have this looked at today and my xray showed signs of pneumonia. So today I am starting antibiotics to hope to get that right lung back up to 100%!

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    Spinraza Plans

    These last few months have flown by and we’ve had some exciting things happening! Back in February, I decided to start the process of starting to receive the newest and ONLY FDA approved treatment for Spinal Muscular Atrophy (SMA) called Spinraza. Spinraza slows the disease’s progression and in many cases, improves the strength of individuals with SMA. It is injected into the fluid surrounding the spinal cord (spinal fluid) through a needle which is inserted into the lower back every 4 months for the rest of the persons life.

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    SMA Awareness

    Happy August Team Kayley Fans! It would only be fitting for the month of August that we do a recap of the funds that have been raised in the past year by Team Kayley and the total overall continued goal of our efforts. The founding year of Team Kayley in 2012 was able to raise over $500.00, which sparked a fire to continue Kayley’s passion to find a cure for SMA. Fast forward to the past two seasons that Kayley has worked for the Sioux Falls Storm Indoor Football team, she set herself even bigger goals. The 2016 season that the Team Kayley fundraiser was done by the organization, there…