There is a sign on our kitchen wall that reads "We Interrupt this Family for Baseball Season." Anyone who knows the Deffenbaughs is aware of our love of baseball and for most of us, especially Alyssa, our love of the Boston Red Sox. Today is a special day that baseball fans everywhere celebrate each year - Pitchers and Catchers reporting to Spring Training. It's a day for new beginnings, where anything can happen and every team has a chance to be a winner in the coming season. That's also how we feel about Alyssa today.
She has made amazing strides in the last 48 hours. She's up walking and out exploring this mass of hallways and rooms that has been her home for the last two weeks. She commented that it was nice to see the walls and not just the ceilings that she saw as she was wheeled from room to room. Tonight we had dinner in the Twig Cafe with her Aunt Donna and Uncle Brian. As we all sat there talking, it suddenly hit me that there at the table was a smiling, happy Lyssa, sitting in a spot that her mother and I had shed so many tears over the past two weeks. It was a moment that we thought might never come, much less this fast. It felt great and it's something that I will treasure forever.
Blood pressure levels have been great. So much so that they are now beginning to lower a couple and eliminate one.
Her blood labs are so promising that they will now begin tapering her off of the plasma pheresis treatments. Three each for the next three weeks, then two per week, then hopefully none.
On Monday, three vials of Alyssa's blood will be sent to the University of Iowa for genetic testing. They are specifically looking for a genetic defect in what is called the complement gene. This defect can cause severe cases of HUS. Having this information is crucial to determining future treatments and helping in preventing relapses. Preliminary results are expected within 3-5 days. This type of testing is very expensive and we are very thankful to Rochester General Hospital for underwriting the costs. Just another example of how they go above and beyond at RGH!
Like spring training, anything can happen in life and has with Alyssa. She is beginning anew, with a new team of players behind her, optimistic about the future and ready to accept the many changes that will challenge her in the coming months.
dd
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Thank you so much for such wonderful news!
ReplyDeleteAlyssa and the Deffenbaugh family, my name is Kevin and I am a friend of Marks from Portland. I have been following your blog for a couple weeks and I have to say how impressed I am with the strength exhibited by Alyssa and her family. I am inspired more and more by how well you are doing through such an impossible situation. Keep up the fight and thanks for sharing your experience with me
ReplyDeleteHello Alyssa Update Followers! We had the true pleasure of visiting Alyssa and Dave right after they received the exciting news Thursday evening. Dave has often mentioned what a trooper Alyssa has been through this entire nightmare, but I was delighted to find her sparkling (like her blood during plasma pheresis) and witty. I believe that she has 3 weeks worth of "feisty" bottled up and it was fun to see her let some loose. Her sense of humor was a delight to see.
ReplyDeleteWe had a wonderful visit and took a long walk AFTER we had been standing in the hall chatting 10 minutes. She appeared very steady, but in her "trojan" slippers and sweat pants, very tiny.
It was wonderful to hear her making plans for what type of bikini she would wear on the upcoming family trip, their reward for enduring this trauma.
D & A,
Thank you for sharing your evening with us. It was very special and I too will cherish that moment in The Twig. It was magical to see you both smiling.
Keep treasuring the small moments of normalcy, they are the important milestones and a lesson for us all.
Love you! Aunt Donna