I was reminded by my Itty Bitty Buddy, that it's been several months since I last posted and not everyone has facebook! Lol, well a lot has been going on it's just not good going on. Evan continues to Neurostorm and his episodes have become more frequent, 2-3 a month now lasting 3-7 days. Weve become much more adept at handling them and if we start the different medications at the first sign of one starting, we can usually keep him out of the hospital. The only problem is “what is the trigger”? No one knows, we finally said enough is enough, starting with the Baclofen pump a thorough evaluation has been done. A dye study was done last week, it appears to be functioning normally. It has moved from where it was first placed and is now lying above his hip bone& below his rib cage, so as soon as a surgery date is set- it will be moved. He indicates it hurts so we have him wrapped in an elastic waist cumber bum. All he needs is a tuxedo & he's all set! He is so amazing, when these agonizing episodes are over, he is all smiles & joking with us. I honestly don't know how he does it, he gives me so much strength and humbles me to what is really important in life.
In the past few weeks Dave & I have both lost parents, Dave’s father John (94) passed away December 27th. We were really blessed to have to have a Mettie family Christmas Eve, with everyone at our house. My mother Ruth Gray (89) passed peacefully in her sleep January 16th , in Spokane where my brother lives.
Due to ongoing issues with our Home Health care Agency for the past 8-10 months, we have changed to a new one, ResCare which was effective Jan17th. I’m already feeling the “crazies” settling down, it will be nice to be able to rely on coverage and a fully staffed schedule for Evan. Between his Neurostorming and missing caregivers we haven't been able to leave for many,many months. Did I mention I’ve gone crazy? If anyone has a condo in Hawaii for a week they don't need-SIGN ME UP!!! Lol
I’m sorry this update is such a bummer but life is what it is…We continue to pray for healing and wisdom for Evan, that his Neurostorming episodes stop and his body regains its strength. Amen