Friday, September 28, 2018

Updates and Benches

So a quick update. My MRI was clean, bloodwork says I am healthy as a horse, and the only thing that was off the charts was my Ebstein Barr antibodies. Which the doctor said was an indication that I had mono some time in my life. The strange thing about being involved in a tragedy like losing your mother very young is you become a bit of a family focus. I can promise I never had mono or my family would have known. Not even anything that resembled mono. So the doctor still maintains they believe I got something viral that attacked my facial nerves, muscles, and possibly my brain. So if I see anyone after this it will be the neurologist. Which I do still have ringing in my ears and I battle headaches but overall I am much better than I was! I personally think this WAS mono which explains the antibodies and is why I couldn't get out of bed. It's the reason I felt so incredibly exhausted for so long and we finally tested for autoimmune at a point the illness was going away. Again it's all just a guessing game. So my lasting effects may be the ringing in the ears and the eye swelling when I am tired or stressed. I can live with that. I feel like I can live with ANYTHING after feeling so crummy for so long. 

So yesterday we had a buddy bench installed at Jude's elementary school which will promote inclusion, friendships, and smiles. It will also be a lasting memorial to Jude. The school provided a dedication ceremony and it was very touching and emotional. We were grateful for their kind words about Jude and their memories of him. I miss him every day. It was so great to see Jude's nurses who attended.  Sometimes it's hard to convey to people just how much. I miss going home and holding him as we watched TV and how he loved to snuggle. As I drove away from the school yesterday I thought I could see Jude sitting on the bench and he was smiling. I am sure he was. 

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