Sometimes you try and fail...

If I step back and look at things I tend to ask why God...

I tried so hard to make it to church on Sunday but Faith woke up screaming and throwing up. It took us 2 hours to get her calmed down and then it had passed we could no longer make it. How do I get past this? How do I make it?

The weekend was horrible for Faith. She cried most of the weekend and was attached to my hip. She is now running a fever and she is complaining about her back and wants to just sit with mom. I love her and I just want to hug her but I am at a loss. She needs me all the time and I need some me time. Well atleast no ER visits this week and I spent some time with a friend on Sunday. That really made my month since I do not get to do anything normally.

The other girls are good and had a good weekend. My sister Linda was in town last week and she was great to have here. I miss her now that she is gone. I really liked hanging out with her. My sister Dina is still in the hospital and my mom is having surgery today. So our family could really use your prayers.

Well, that is my update for now.

Blessings-Jen

Send prayers our way...

Well it has been a crazy couple of days... My sister had surgery yesterday and my mom is due to have surgery next Monday. Emotionally I am on a rollercoaster and I think that I want off this ride but for some reason I can't...

Faith is not doing good. Her tanturms are getting worse and worse and she is so sensitive. Her SID to going nuts. I have made a connection of her SID with TCS and it make perfect sense. She flips out about everything and wants me all the time. She is a complete pain in the butt at times.

We have decided to homeschool her and grandma is going to help during the day. What a blessing this is!!! Praise God. Please pray that I can raise the money for the school books. It is going to cost about $500 for all that we need to get started.

She is complaining about a lot of nerve pain in her feet and legs. she ripped open her feet trying to make it stop. She did not understand what was going on with it. She does not want to wear anything on her feet anymore. No socks.. no shoes... It drives her nuts...

Well I think that is a good update for now.
Thank you all for your prayers... she is feeling them each and every day.

The insanity goes on...

These past few weeks have been insane and I think that Faith finally has had enough. She spent all day in bed yesterday... while her and I did.

She screamed all morning, she has a bad rash and she is just a mess. Her flushes are getting more and more differcult to do and she cries through them. We are having a real time with her going to school. She is either running a fever, in pain and just plain too crabby to go anywhere. I am at a loss as to what to do. Should I keep sending her even though she only can go 2-3 times a week or should I be done with the stress and confusion and just home school her. I wish God could help me find the answer to that one.

Today I do not feel strong. Today I feel weak, I feel defeated, I feel like the days just get worse and I am not sure when they will just get right.

Every week that I try to go to church I just find myself in the middle of a complete break down- the past 5 weeks every Sunday is a complete and otter break down with Faith.

Well all I have to say is pray for us- pray hard for us because right now that is all we know and that is all we need.

Blessings-Jen

An update... Sorry it took so long.

Well it has been a crazy couple of weeks and I am at a loss by now... I feel like a part of me is dying more and more. Faith has had a rough couple of weeks. Her bowels are just not acting right and each colostomy flush is having us hold her down more and more.
Lydia was home this weekend and was able to take Faith on Saturday so that I could work the downtown festival. That was such a big help and I am so apprecaitive of that. She may never know how much.
Sunday was complete hell... I pushed both Faith and I to far and in the end it was not good. Faith tries so hard but it is so hard on her to face this each day.
My pain is out of control no matter what I do (pain meds- lots of pain meds, massage, rest, whatever) I can not get through it. It brings tears to my eyes that at 30 years old, I have four young children to take care of and I can not do it. Everything I do brings pain. No matter what and not in one or two spots but all over my body. I just can't get any relief. Patrick tells me that there are so many people out there that are worse than me and I can do it if they can. Well that helps.... :(. I mean I have a sick child to take care of, 3 other children Isn't that enough for one person. I have lost all of me atleast it fells like that. I can not do anything, go anywhere... Everyone forgets about me becasue I am out of site but I am still lonely.

Well Faith is headed back to the OR this week some bowel work. Update more after than!!!

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).