Prayer of the day

Okay I know that not too many people read this yet but here it goes...
As many of you know a parent of a special needs child is a special assignment from God. I love my Faith and all of girls don't get me wrong but... I am tired!!!

I feel trapped like there is no ME time. I feel like all I do is work and take care of kids and Faith.
I do not know the last time that I have been out of the house without children (except to go to work).

Faith has a aide for 20 hours a week and 2o hours of respite care. We need this with 3 other children to care for and with my lupus/fibro. But the aide that we have is just not wanting to do the work. She would rather talk on her cell phone and sit on the couch then take care of Faith.
I wish I knew what to do. It is not easy to find an aide let alone a good one. Faith cries that she wants Lydia back and I am visit she will here too but not until next summer.

So for anyone that reads this please pray for me as I am battling my emotions.

Faith's History

Faith Marie Keiffer is currently 7 years old and over the past year has had over 40 surgeries. Her surgeries stem from her various conditions such as tethered spinal cord with has resulted in complete loss of bowel and bladder control.


The first surgery on the bladder that was tried was a suprapubic catheter so that her bladder could drain constantly. Unfortunately the catheter was not letting urine drain properly and cause repeated infection of her kidneys and bladder. She has the catheter replaced through the OR over 15 times. She was on medication for infections from March of 2007 until January of 2008. This caused her body to form a resistance to all antibiotics and required a PICC line to be placed. She is considered MRSA now and requires good germ control to prevent more infections. In January we decided remove the bladder and flip it over on the abdominal wall so that it could drain through a stoma created with the bladder lining on her stomach area of her tiny body. This requires many changes daily which happens every two hours or so. We use two diapers at a time and 10-12 changes a day. Usually every change needs a change of clothes too.

The next surgery was to correct the spinal cord and try to save further loss of leg function. This surgery was a success but left Faith with a lot of daily pain that we control with medication and such. She is not able to be very active or participate in a lot of activities that a normal seven year old would do.

The next surgery was to complete what is called an ACE procedure or a colostomy. Faith’s bowels were mostly removed and a different route was completed. We need to flush her bowels every night with glycerin and water through her MIC KEY button.

Though this all Faith has not grown in about 4 and half years and is 27 pounds. She has growth hormone deficiency and takes shot for it daily but we have been unable to get her to grow due to the numerous infections and such. She also drinks 3 cans of pedisure a day to help her grow.

Faith has had many other surgeries and such done. She has spent about 25 weeks this past year in the hospital. Because of her immune system and antibiotic resistance everything that she touches has to be bleached and cleaned. She has to use special soap, shampoo, lotion, detergent and such.

Faith's kidneys are failing now and she is chonic renal failure. Faith also has ADHD and SID.
Faith has three other sisters (Katie is 13, Alyssa 9 and Bella 6).