People often ask us, "How do they treat the mitochondrial disease?" Well, for the first time ever I will show you. You see, mito is treated with "drug cocktails"... each mito kid is treated with a different combination of drugs and supplements. The five meds on the left are temporary... antibiotics and pain medication due to the surgery. The 14 on the right are Ana's everyday medications. These 14 are five medications split into 14 doses. Two are supplements proven to help slow the progression of the disease, one is for abdominal migraines, and the other two are neurological/pain management drugs. She also uses an inhaler twice a day and requires enemas regularly. Fitting these medications into the 16 hours Shey and I are awake is very difficult. Please pray for us. Giving a little girl this many meds each day takes an emotional toll on her and us. Thanks for letting me share...
Dear Bennet family:
ReplyDeleteI am a member of CBC though I currently live in Hawaii. I am a friend of Tobi Soctt and am Lisa Taylor's sister. Thank you for including Jaden on your website and in your blog. I want to encourage you in the name of Christ to perservere. I have read your blog many times and prayed for you and Ana Maria sevreal times. Being beside my sister in this traumatic time has deepened my appreciation for life, especially those of our children. Sometimes parenting is difficult and parenting a child with special needs is difficult in different ways most do not understand. You do a good job faithfully posting and giving glory to God, which I know can be difficult in times of trouble. Please know that you and your family are in my prayers. Ana Maria is a beautiful child. Her spirit shines right through in her pictures. Sending the love of Christ within me to you, Amy Ausbrooks