Lost Mail Arrives

“Strange as it may seem, I still hope for the best, even though the best, like an interesting piece of mail, so rarely arrives, and even when it does it can be lost so easily.” -Lemony Snicket, The Beatrice Letters

I'm still in shock from the news I received today. It's like those stories you hear about where a letter has been lost for years, but randomly, unexpectedly arrives. I had hope that we would find a doctor that would not only confirm my mom's diagnosis, but would also be willing to treat her. As the months have worn on that hope has gotten smaller and the desperation has grown. I've watched my mom lose more and more weight and had a harder time keeping food down. We've gotten our hopes up each time we've found another doctor only to hit a dead end so that's why today feels unreal. I keep thinking that I'm going to wake up and this will be a horrible cruel dream, but it's not, it's real...our lost mail has finally arrived. Early this morning my mom went in for more of the same tests just at a different hospital. I emotionally shut down once I received her text stating that the resident thought it was just reflux and compression of her duodenum yet nothing more. I didn't want to respond, how do you respond when you have continued to feel so let down. I guess I was just trying to pretend that things were okay and we hadn't hit another dead end. Thankfully I did respond to my mom which resulted in some wonderful news. The doctor at Johns Hopkins is certain my mom has SMAS and wants to do surgery on her asap. Now my mom must decide to risk a surgery, where several SMAS patients have ended up with complications or attempt a feeding tube. No one can make this decision for her, but I'm thrilled that we found someone finally willing to take action and help her.

Enduring the Darkness

“I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars.” ~ Og Mandino

Close your eyes, say a prayer, hold your breath, and wish for the best. It's taken me awhile to update because of the stress, disappointment, holidays, and wedding, but now it's time to attempt to put my thoughts into words. My mom's last trip to Florida did not end well. After a round of tests the doctor said everything was normal. Thankfully my mother was persistent and the 3rd year resident told the doctor she was pointing to her SMA. The doctor wanted to immediately admit her to the hospital, but my mom was flying back the next day and we had to finish getting everything ready for Thanksgiving and the wedding. Good news is Johns Hopkins agreed to take her case, scheduled her for an appointment, and she sees that doctor on Wednesday. I'm afraid to let her go on her own because she has been feeling worse, throwing up more, and becoming exhausted much easier. I don't want her to travel alone, but like myself, she is very stubborn and trying to prove to herself and everyone else that she's okay. On December 3, she gets a feeding  tube put in. I might have to fly out to Florida and drive her back home. 

 I was really worried about her last week between family, Thanksgiving, and the wedding my mom was feeling very weak. I don't think her nausea has ever been this bad. Plus, her migraines are becoming worse and lasting longer. One of the hardest things to handle was my dad's family being over and trying to get along after them not being part of our lives for ten years. There's more that I wish I could write, but everything is still too jumbled up.