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Apr 28-May 04

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Hi everyone! 

It's been a minute since we written an update. It's been an overwhelming month for our family as we continue to adjust to our new routines and patterns. 

alicia (they/them) arrived in Minnesota on April 27th to help support Mom and Dad. They have been driving and accompanying Mom to appointments while Dad has been getting back into work. Mom has enjoyed having another person around, as she gets bored with resting! 

One of the major updates to the story is that Greta is positive for a genetic mutation, called the Factor II Mutation. Because the mutation is passed through genes, alicia and I (Katrina) were told that we needed to be tested to see if we had it. alicia's results came back quickly and negative! We're very grateful they do not have the mutation. 

Unfortunately, my test results took a longer amount of time to be processed and came back positive. We haven't known what this means for me, but it's been information that is hard for all of us to process because of the trauma attached to the diagnosis for Mom. 

However, I (Katrina) am in Minnesota for a long weekend to celebrate alicia's birthday and Mother's day.  I finally got in contact with the hematologist I was referred to and they were able to see me while I'm in Minnesota. The good news is that unless I have an active clot, I will not have to take blood thinners. Having this diagnosis simply means I am more likely to clot than the average person. There are some things I can do to decrease my risk of clotting and I'll be working on those, but for the most part I can live my life. 

It is a relief to know this information for all of us. Mom will be meeting with her own hematologist to get more information on what the diagnosis means for her in June. She is currently in outpatient Occupational Therapy, and will be starting Speech Therapy soon. There's a bunch more appointments that are on the calendar, which is great and overwhelming. 

Another wonderful healing milestone is that Mom was given a CT scan and talked with a neurosurgeon. The bleeding in her dura matter in her brain is completely gone, and the swelling of her brain is also completely gone! This is huge news as it essentially means she is able to start doing some more activities and slowly increase the intensity of what she's able to do. 

Mom is making incredible strides in her healing. She has been cleared to play piano, and is taking great delight in the times that she is playing. She is also able to focus for longer amounts of time and is understanding the limits of her energy. 

As we are altogether for the first time since Mom was in the hospital, we are deeply grateful that Mom is still with us to celebrate Mother's day and alicia's birthday, both May 9th this year. This journey is proving to be both challenging and easy, with opposite emotions often being present at the same time. Grateful and mad. Tired and energetic. Confused and clarity. 

We are continually grateful for the meals, emotional support and people reaching out to us. Thank you for continuing to keep our family in your thoughts and prayers. 

Love from Greta, Jim, alicia and Katrina 

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