Saturday, December 31, 2011


The following is an excerpt from my journal last New Year's Eve: "Strange, it doesn't feel like New Year's Eve.  All I can say is I'm looking very forward to a new year.  Today is Day 5.  Levi continued to seize so the doctors decided to put him on Pentabarbitol in a drug induced coma for 10 days or thereabouts.  They are working right now on placing an arterial line so they don't have to stick him for blood and meds.  The Pentabarbitol will allow his brain and body to rest and heal while the antibiotics are working to fight the infection."

Wow, it's been quite a year.  We endured a month in the hospital, dealing with the dreaded PICC line and IV antibiotics that we had to give at home, brain surgery, endless hours of daily screaming that went on for a couple of months, new seizures, 2 hip surgeries, a body cast, hip brace, several new medications that we hoped would end the seizures but only ended in disappointment and sometimes in worsening seizures, and countless trips to Cardinal Glennon to visit countless specialists.

We have been blessed by our family, church family, and friends who gathered around us from that very first day in the hospital and have always been there to love us and support us.  Tommy, who had to do without his parents and stay with Aunt Misty every night.  Mom, Misty, Shelly, Brian and Dale, who spent so many hours at Cardinal Glennon with us.  They brought us puppy chow, made homemade soup, and paid for our meals.  They spent time with us when we couldn't even walk into Levi's room, because even that small amount of stimulation was just too much for him.  We all hung out in the McDonald room, a lovely oasis where we could shower, have coffee and snacks, and just look at walls that did not resemble a hospital.  I'll never forget my favorite volunteer, Gary.  He always baked delightful snacks and cheered us with  his sweet personality.  We had many interesting discussions. (Gary, if you read this, please let me know.)  We met the most amazing nurses: Elizabeth, 3 Sarahs, Tiffany, Darby (who let me hold Levi for the first time after he came out of the coma), Marie (who saved Levi's life when he was choking on the breathing tube), and many others.  We've met other families who understand just how we feel: Jessica, Erin, Shannon, Amy.  We've been blessed with therapists who come into our home and not only teach Levi, but love him: Shawnery, Becky, Diane, Mary, and Jenny.  All his doctors are wonderful, but we feel a special bond with his neurologist, Dr. Chrusciel.  We've been in such close contact with her for so long, she's more like a member of our family.  There are really no words for the high quality of care she gives Levi!

So as I reflect on a year full of both trials and blessings, I am again ready for a new year.  I'm ready for seizure freedom, ready to watch Levi learn to crawl, and walk, and run.  It's going to be a great year!  Happy New Year to all of you!  Thank you for your continued prayer for Levi!

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