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.

Moving Foward in a Cold Front

As Faith grows we continually adjust her Medicine, Therapy and Diet. We are on constant watch for signs that a new adjustment needs to be made or that one of the adjustments already made are having a negative effect. This makes it very difficult to diagnose whats going on with Faith when unusual symptoms start popping up. Several times Faith has had a mild fever and accelerated heart rate. It took us a few of these occurrences to realize that these are typically Urinary Tract Infections.



A couple of weeks ago Mason was so kind to bring home a virus that has been going around. We were as cautious as two parents could be, but with Mason it's hard, especially since he loves to play with Faith and she loves playing with him too. Faith started to show signs of a temp and an elevated heart rate. ("0h great another UTI") but after a day had passed she started have alot more mucus in her trach and even if her trache was clean, Faith's breathing was labored. By Wednesday of last week we were ready to take Faith to the ER for her difficulty breathing. By now we had realized Mason had given her his cold. (a common cold looks very different for a kid with a trach) The hospital told us to stay home and have Faith spend more time on her ventilator. We did and it worked! After two days with the ventilator and lots of rest she was looking and sounding much better. Praise God! I hate watching that girl have such a hard time breathing.



About a month ago we adjusted Faith's feed schedule to a more concentrated formula. At about the same time she had been diagnosed with another UTI, for which she was prescribed an Anti-Biotic for a couple of weeks. For three weeks Faith started throwing up a large amounts of her Feeds. Faith started to loose weight. I was so sure that we were giving Faith to much fluid with her new feed schedule. The doctors told us to wait it out, maybe her stomach wasn't agreeing with the antibiotic. After Faith quit taking the antibiotic she still was having difficulty with her feeds. Of course this was about the time she got sick. If your pulling your hair out by this point in the story, don't worry, so were we. An Xray this week revealed that Faith's stomach manages her fluid very well. PTL! While it may have been the antibiotic or the illness, we don't know, but she does seem to be tolerating her feeds a little better. Only time will tell and hopefully she stats gaining weight again soon.

Last week we had an ENT appointment to look at Faith's upper airway. Last time this procedure was done Faith passed out twice, and nothing was able to be determined. Conveniently Faith was sick during this appointment and she didn't seem to have the strength to get mad and pass out. So she sat there and whimpered while the doctor took a look at her vocal cords. We obviously had our hopes up that Faith's vocal cords were back to fully functional. As it turns out one is only showing partial mobility and the other is showing very little. This was a little difficult for both of us to hear, but the Doctor was still open to taking steps toward removing the trach. This will be a long process, but we were glad to find out that its still a possibility. Please pray for her continued progress in this area.

Sorry to barrage you with so much information. Please know that Faith is doing really well. She has been very happy and seems to be her old self the last couple of days. Hopefully she stays that way for the remainder of the winter.

We love you all!

Thanks for your prayers

Past Two Months

Faith has high blood pressure so it is monitored in Clinic. Her last appointment was in the middle of December. While we were there her urine was checked to make sure it is clear and with no infection. We have started to use a catheter every 4 hours to help her empty her bladder so she doesn't reflux it up into her kidneys. With that being said she is at higher risk for UTI (urinary track infection, so her urine was checked at that appointment and was positive for a UTI. They "dipped" her urine and can tell if there is an infection, but if it is positive then they send it to the lab for 48 hours to let the infection grow so they know how to treat that particular infection. So I called CMH Clinc many many times to get directions on what I was suppose to do, or if I need to pick something up from the pharmacy. No one called me back and when I did talk to the nurse she seemed to think if wasn't a big deal. So I let it go, NEVER AGAIN WILL I DO THAT! In January and Feburay we went to the ER twice for a high heart rate and a on and off fever. Get this all due to the UTI that wasn't treated! She has had two or three UTIs in that past 2 1/2 months. If been scary at times, not knowing what do to. And when you look at Faith you just think I am so sorry after all you have been through now a stupid UTI all because that clinic office didn't seem to think it was important. On this last Monday we dropped off Faith's urine to be "dipped" at Faith's local Topeka, primary peds doc they told me it was clear (THANK YOU JESUS) then they called later in the week and said the lab didn't find any infection either!!! Best news in three months! Due to her UTI and fevers and just feeling under the weather we were not able to feed Faith anything orally. I am praying that she can start that baby food up again soon.

Two days ago Faith started acting not normally again. So what I am saying is she had about three days of normal Faith and now she is back to sick again. Lots and lots of mucus, fever on and off, and we go to the doctor tomrw but it really wasn't for this it was for seeing the ENT and her primary doc at Children's Mercy. Praying that we can get Faith back to health so we can start talking more about getting this Trach out of her. Side note: that won't be for a while but I LOVE talking about it!! Praying her doctor appointment goes well in the morning.

Please pray for Faith's health and patience for Mic and I. Thank You!

New Year New Beginnings

A news update with the home health nurse.  Right before Thanksgiving we let our full time nurse go.  We were looking for a new full time nurse and during that time (a month went by) and realized that I could handle all three kids on my own.  I loved being a Mom to Faith for the first time.  I know I have always been her mom but for the first time I am taking care of her, giving her a bath, taking everywhere I go and I am even happy that I am the one changing the diapers.  SO NORMAL, which I love!  The only down fall is that the refrigerator and panty having been looking pretty bare.  And also taking her to church has started to be a little too much.  After much thought and prayer we decided that a nurse would be great two days a week, Sunday morning so we can go to church and then Thursday so I can do all my errands around town, maybe get some food in our house. ;)  After many many interviews we found a new nurse!!  Her name is Beth and she herself just had a baby girl two months ago.  So far so good with Beth!!

This has been one year filled with tears, praises and laughter.  Our Biggest Praise is that Faith has turned one!!  And many doctors told us she wouldn't make it to one years old.  So once again she has proved those doctors wrong.  She is a living example to remind me that the Lord is in control with each day, hour, and minute we live.  In the past year our marriage has blossomed not fallen apart, our family is closer and we are not living at Children's Mercy Hospital anymore!  Last year at this time we were so oblivious to what Faith was bring our way.  We thought Faith was going to be in the ICU for 14 days on her tummy while her back healed from the surgery then come home and live a normal life, boy were we wrong.  With everyday we were there living at the hospital we knew the Lord has something up his sleeve.  Still to this day we don't know why Faith is the way she is, but we have had SO many people come up to us and tell us stories about how Faith has grown their faith and stories about how Faith is being used as their witnessing tool to others.  We must stand strong and fight!

Thank You for all who supported Denise while she was out there running 1,000 miles in honor of Faith!!  She made her goal plus some extra miles!!  Way to go Denise!!  Also a big thanks for all the finical support with that run!  http://runningforfaith.blogspot.com/

Hello One Years Old!!

Peanut Butter Pie since she can't cake. :) BTW, she loved it!!

She Loves being a toddler!

A year in pictures.