SPECIAL ANNOUNCEMENT!!!!

We are extending the early registration deadline to October 1st!!!! $25 (18 or older) and $12 kids (6-17) under 6 FREE. Thank you for your participation. Registration forms can be found HERE at pfeiferpage.blogspot.com or on our Facebook page as well! Spread the word and look forward to seeing you in 28 days!! Thanks, Alison Pfeifer

COME ON DOWN!

Promotion Day is TODAY!!! Location is Topeka HyVee (2951 SW Wanamaker Rd) from 9AM-NOON. Come wearing your 2011 "Run with Faith" race shirt and bring a new participant; you BOTH receive $5 off your registration fee!!

2nd Annual "Run With Faith"

It's hard to believe its been a whole year since our last "Run with Faith" 5k Run/Walk benefit for our "Faither Bug". This year has come and gone so quickly despite our many challanges along the way. The funds from last years race have helped accomdate, deductibles, copays, medications, physical therapy equipment, fuel for kansas city doctor's visits and many other expenses that come with life with Faith. Your participation in this benefit has truley helped us in the challanges through out the year. From the bottom of our hearts, we thank you.

Faith's wonderful Aunt Alison has been so gracious as to commit her time and energy to do it all again! Yep, the rumors are true. The second annual Run with Faith will be held at Lake Shawnee on October 20th at 4:00 PM. If you are interested in participating click on the link below to view the registration form. Print the registration form off and follow the instructions on the form.

Run With Faith Registration Form

To keep in the loop, check out the "Run With Faith Facebook Page".

Here is the video from last years race. Check it out!

Come and Run/Walk with us!!!!

It's official!!! The 2nd Annual Run with Faith will be October 20, 2012!!! Details coming soon!!!!

Faith Plays with Duplos

July update

Sorry it has been soo long since we updated the blog about our sweet Faith. Thank you for your continued prayers and thoughts! The Lords love is still shining through in The Pfeifer home. There have been a few more trials with Faith. We found out her kidneys are looking really healthy, which is a good thing but also found out her reflux is still at a grade 5 on both kidneys, 5 is the worst grade you can have. Also found out she likes to hold her urine. They measure it in pressures. The normal pressure should be about 40 and Faith's is 70! So that's real bad. When the doctor told us all of these results, he also told us he wanted to keep Faith's kidneys in the great shape they are in and don't want them to go down hill. He told us there is a balloon that can be placed in her urethra to help with the pressure. The plan was we will do the pressure along with the ENT operating room visit.
The ENT said every 6 months she wants to go in to the operating room and check to see if there is any granulation or tissue build up in her tracheae. We were noticing that when we would wear her passy-muir (Trach speaking valve) she was having a hard time breathing. So we really weren't putting it on Faith as much as we should be.

About a month ago Faith did go into the operating room and did wonderful!! She had the balloon placed in her urethra as planned. Then the ENT said she removed a large granulation and said Faith will be able to use the passy-muir now. We spent the night and then went home the next day. We stayed in the PICU at CMH. (anytime we are in the hospital we will be in the ICU due to Faith being on the ventilator). We were happy to be home and Faith did wonderful and was very happy for the most part.

Some fun news in Faith's life is she got her new stroller which is called a Kid Kart!!!  This Kid Kart is amazing!  It holds her upright and really helps with her posture!  She is happy in it and we are happy that is in no longer in a normal stroller that does more harm then good.  

Tickled Pink

Amidst the difficult issues described in our last post, there has been another, quite intimidating turn of events that has come about within the last couple of weeks. It was business as usual here in the Pfeifer home, Faith had spent the majority of her day sitting in the living room playing with toys, and Ashley picked her up to put her to bed. Nothing out of the ordinary. Faith went to sleep for about 45 minutes and after her nap Ashley brought her out into the living room to play again. As Ashley set Faith down on the floor, Faith flung herself backward...*odd*. Ashley set her back upright and Faith flung herself back again. This time Ashley had put pillows behind her to break her fall. While it was unusual, Ashley chalked it up to Faith's strong will and let her lay on her back to play until I got home. When I got home I went to set her up straight again and it was the same. So, for the rest of the evening, we let her lie on the floor to play.

The next day things became really concerning. It appeared that Faith had lost her ability to sit. Instead of flinging herself back she began to slouch to the left to prevent herself from hitting so hard. I would try to sit her up and she would fight it. I would wrestle her into sitting position and she would slump to the left and not even give it the effort. After a few trys we gave her a break. We sat her in the seam of the couch, where she could be upright and comfortable. As the day went on we recognized that Faith's right arm had lost a lot of mobility as well. She didn't seem to want to lift her arm at all. She would avoid using it unless she really wanted to and even then she would use her fingers to pull the rest of her arm along instead of using her shoulders to do the job.

At first we thought it was a balance thing. We thought, "Maybe she is just disoriented and she can't sit up". Balance being associated with your ears, we called our "on call ENT" (Ashley's Brother) After a short house visit he said her ears look just fine and we dismissed the theory.

We then called our "on call Therapist" (Ashley's Mom). After some brain storming with Pheobe it had come to mind that Faiths Neurosurgeon had mentioned, that the syringomyelia in her spine could get worse. He advised that if Faith ever lost any mobility in her extremities to give him a call. I was sure this had to be the issue. We called his office and he agreed this could be the problem and suggested we schedule an MRI to take a look.

My assuredness of the situation brought to memory the original conversation with our neurosurgeon about the issue. The surgery to correct the syringmyelia is invasive, high risk for potentially little reward. I remember he did not want to do the surgery unless things were getting progressively worse. It left us both not quite sure what we were hoping for from the MRI results.

After much difficulty in getting the MRI done, we finally managed to secure a spot on Friday night of last week. Faith passed out twice prior to the MRI. We tried to convince the anesthesiologist that this was nothing out of the ordinary, but he insisted that we stay the night to be sure that she was okay. It was a long weekend waiting for the results.

The Nurse Practitioner for the Neurosurgeon called us Monday. Upon review of the images, the Neurosurgeon felt the pocket of fluid on Faith's spine looked the same size as the last time it was scanned, if not a little bit smaller. Its not a problem with the fluid on her spine. Praise God!!

While this still leaves us with the big question of "what the heck is going on with Faith?" we realize that we are always asking this question... and while we hope we can figure out why she can't sit up anymore, we will continue to walk through this problem like every other one we have faced. Hand in hand with God and one day at a time.