When you are in the middle of a medical crises, two weeks can disappear before you know it, and at the very same time feel endless. So, here I am, 2 weeks/”one year later” putting in an update. Happy New Year, everyone. I’m hoping that 2014 brings good things for all of us!
Since “Dreaming Of A Real Christmas“, our life got even more complicated! (yes, it’s hard to believe). Today marks Day 62 of Daughter A.’s mysterious and debilitating illness. After suffering through Christmas Eve and Christmas Day in the hospital, she was suddenly and unexpectedly discharged on Saturday, December 28th. We had no warning or time to prepare. The doctor had no proper discharge plan in place but still insisted she must leave. Due to being a Saturday we had no social worker or case manager present to advocate for Daughter A or for us. It was a very scary, frustrating and maddening experience. (doctor & hospital = major fail).
That was a very bad day.
Daughter A was able to return home in time to celebrate her 23rd Birthday on Sunday December 29th. We held a little dinner party with family and it was wonderful to be gathered around the table again! We were even able to FaceTime with Grandma and Grandpa serving a full-time mission in California, so all could sing “Happy Birthday”, and we laughed and talked for a good long time! It was officially noted by Daughter A as her “happiest birthday ever“.
That was a very good day.
We are learning to embrace and treasure the good days.
Due to not being able to shuffle more than a few steps at a time with support, and having the use of only one arm, we had to get very creative navigating the house – particularly all the stairs. (Mr. MoSop wanted to try using the bobsled…ummm, a little TOO creative!) Due to her risk of seizures and her bedroom in the middle of being remodeled, she had to sleep on a makeshift bed on the floor of her parent’s bedroom. (not ideal! The dog thought she was new comfy pillow to lay on!) We made do, tried to keep a sense of humor, and focused on finally getting to spend time as a family going out, and doing something fun.
Then, the roller-coaster ride suddenly plunged downward again. Late New Year’s she experienced one of her seizures which left her without the use of both arms, unable to stand or bear any weight on her legs and other loss of functions. We were forced to return to the Emergency Room for evaluation, where we ended up staying for over 32 very long, very miserable hours (probably setting some sort of ER-stay record).
More seizures. More loss of functions. Then, in the midst of our sorrow, confusion and desperation, God reached out and sent some miracles.
Miracle #1. Daughter A was finally evaluated by the specialist we have been begging and praying to see for weeks. We were told he would not come, but then at the last minute he rearranged his schedule and walked into our ER room! He took a lot of time with daughter A, and had a kind and positive bedside manner. He shocked us when he said he believes the diagnosis we were given all those many weeks ago may be inaccurate. That would explain why she is not getting well, but it means more testing and evaluations must be done to discover the mystery diagnosis before a treatment plan can begin. It’s hard to believe we’re back at “square one”. But, thanks to our Heavenly Father’s miracle we now have a specialist focusing on solving the mystery!
Miracle #2. Since the doctor would not be admitting her to the hospital, we needed to find a place to care for Daughter A. Due to her deteriorated condition, the ER case manager began working on sending her to a “Skilled Nursing Facility” (i.e. Nursing Home). We were in tears. We didn’t want to send her there, but we didn’t have any other options.
Twenty miles away, my Aunt D was driving home from Costco with her car loaded up with groceries. She said she suddenly felt like she should not go home, but she should drive straight to the hospital instead. She knew that we were in the ER, but she didn’t know our current situation. She only felt it was urgent to go check on us. So, she didn’t hesitate. She didn’t question. She didn’t stop to worry about all the perishables she had just purchased that would probably be spoiled. She just turned the car around, and came! And because she was willing to come, a miracle was able to happen for us. The moment Aunt D walked into our ER room, an angel of mercy arrived who literally rescued us and snatched us from the brink. As a trained nurse, Aunt D saw the need, and didn’t hesitate. She told us she would bring Daughter A to her home to care for her for awhile!
We will be forever indebted to Aunt D and her husband, Uncle J. They immediately put their lives on hold and opened up their home, their hearts, and their time to selflessly serve us for a full week. That Friday night, after tucking her in at Aunt D’s, I had the best sleep in months. This week Mr. Mo and I were able to return to work and try to catch up at the office. I’ve been able to focus on finishing the re-painting, re-modeling and retrofitting of Daughter A’s bedroom so that she can finally come home. [The “Big Reveal” will be tonight!]
- We are praying the doctors will order all the right tests so they can find the missing pieces of the puzzle
- We are praying to find the right treatment plan which will lead to a cure.
- We are praying more function returns for Daughter A.
Outside the snow is softly falling. Everything is quiet, cold, and still. It’s the season when the earth must rest, wait, and trust in the promise of new life to come. And so it is, for us.
Meanwhile, we are waiting and watching for miracles. – MoSop