tag:blogger.com,1999:blog-81944488146072261392024-02-19T06:41:50.581-08:00The Pfeifer PageUnknownnoreply@blogger.comBlogger105125tag:blogger.com,1999:blog-8194448814607226139.post-42904676961821671612017-07-21T07:02:00.001-07:002017-07-21T07:10:05.679-07:0018 Months Later...<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: white; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">July 21, 2017</span></div>
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<span style="background-color: transparent; color: white; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Today marks 18 months since my third child went to be with Jesus. 18 months seems so long ago and yet just like yesterday all at the same time. If you are a mother you know the feeling of bringing home your baby for the first time from the hospital and making all the adjustments needed to fit this new person in your life. I tell people that it’s one of the strangest feelings to have to have done the opposite. This little person you have been in charge of, making sure they are fed, clothed, cleaned, and loved no longer is needed from you. There is an empty spot not only in our house where her toy corner use to be or where her head would sleep, but in our heart and in our soul. </span></div>
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<span style="background-color: transparent; color: white; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I am so grateful for all 5 years and 25 days we had with Faith here on Earth. She has taught me soo many things. Like how to advocate for your child in every single sinaro, from daily life to dealing with doctors and therapist. They think they know best but parents know best about their own child. And even if we don’t really know what to do, we have to act like we know. She taught me how to be a real fighter, never give up and always SMILE. She taught me how to not judge the ones around us. There are so many ways she had enriched our lives. It’s crazy to think about how many things she has taught us and she was only here a short time. The Lord only takes the ones off Earth that have completed their mission here. That is why she is no longer here, mission complete. But the good news is I didn’t “lose” Faith, I know exactly where she is, in heaven with our Heavenly Father waiting for us to join her. </span></div>
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<span style="background-color: transparent; color: white; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I still get asked “How are you and the family doing?” I don’t know how to respond sometimes. Most days are good but some days I miss her like CRAZY. I can ALWAYS cry, drop of a hat about her. They might be happy tears, remembering such wonderful things she did in her life. They might be sad tears, because I miss her and want her to be in her wheelchair or playing with her brother and sister. Please continue to ask and please don’t be afraid to EVER mention her name to any of us. We love to talk about her! She is mentioned every single day in the Pfeifer home. </span></div>
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<span style="background-color: purple; color: white;"><span style="font-family: "arial"; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Jeremiah 29:11 </span><span style="font-family: "arial"; font-size: 11pt; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.</span></span></div>
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<span style="color: white;"><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Every single birthday for the rest of my life here on Earth I will wish for...one more, just one more hug with her pat pat on my back and then her look and me and hold my face with both little hands then kiss me really big then of course end with a smile looking at me. </span><span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">I miss her EVERY single day. </span></span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Thanks for reading,</span></span><br />
<span style="color: white; font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">Ashley</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-70213568515438632482016-01-28T10:36:00.001-08:002016-01-28T10:36:53.342-08:00Faith Memorial Celebration<span style="font-family: Arial; font-size: 14.66px; line-height: 20.2308px;">For those of you whom were unable to attend the Memorial Service it is posted below. </span><br /><br />
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<span style="font-family: Arial; font-size: 14.66px; line-height: 20.2308px;">I have also include the my contribution to the service, for those who have asked for it.</span><br /><br />
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<span style="font-family: Arial;"><span style="font-size: 14.66px; line-height: 20.2308px;">Thank you</span></span><span style="font-family: Arial; font-size: 14.66px; line-height: 20.2308px;"> all for your love and support.</span><br /><br />
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<span style="font-family: Arial; font-size: 14.66px; line-height: 20.2308px;">Love,</span><br /><br />
<span style="font-family: Arial;"><span style="font-size: 14.66px; line-height: 20.2308px;">The Pfeifer Family</span></span><br /><br />
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<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/ZhLkwHQph-Q" width="480"></iframe><br /><br />
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<div dir="ltr" id="docs-internal-guid-84d52465-8980-88dd-e30c-ebc7fb0ef168" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt; text-align: center;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;"><u>For Faith</u></span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">About 5 years and nine months ago Ashley and I learned about a very exciting addition to our fun loving, busy body, close nit family. We embraced this news with excitement. We told our immediate family and some close friends. We talked about names and tried to fit this new life into our life with great joy and anticipation.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Then we received some news. The kind of news that no expecting family wants to hear. We were asked questions. The kind of questions that no expecting family wants to be asked. Fear ran rampant in our hearts as we could only guess as to what was to come with this new life.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">We prayed hard. Sometimes we prayed for miracles, sometimes we prayed for strength, sometimes we didn’t know what to pray and you prayed for us.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">With the fear of not knowing what was to come we embraced one another and our faith and stepped forward into a world we could have never imagined. This is how our daughter came to be named Faith. For we knew that whatever the challenges lay ahead of us we could not face them without faith in our God.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">On December 27th 2010 we gave birth to a beautiful blue eyed baby girl. She would change our life forever. She would outlive and outperform all of her doctor’s and therapists expectations. She would impact more people than we will ever know.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">From that point forward Faith became our life's work. Our home became an extension of Children's Mercy Hospital. Ashley and I became experts in Faith’s medical conditions. On multiple occasions we would advocate for her life. We would dedicate our time to her therapy. Our energy would be sapped by sleepless nights and heavy equipment. Our family would pour into her all of the love that we had to offer. Our eyes beamed with pride as Mason and Elizabeth selflessly gave their time and attention to her when they so much more deserved ours. Nurses invaded our home. Some of them became a cherished parts of our family. We love you Amy and Hanna. Our support was unending. When we needed time off work, it was never questioned. When we needed financial assistance people gave generously. When we needed prayer the word was spread to the ends of the earth and people prayed. </span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Many people look at our family in disbelief. They make comments like “I don’t know how you guys do it.”</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Make no mistake about how her light has been so bright. Make no mistake about where this unfailing love has come from. Make no mistake how this patience has endured and make no mistake on how it is we will come to see her again. We receive all of these things through our Lord Jesus Christ.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Faith was the perfect addition to our family. Her contagious smile always drew us together. Her advances in her therapy gave us hope. Her moments of distress reminded us of how fragile life was. All of the while drawing us toward God. It was as if the whole time she had one hand heaven holding on to Jesus and other hand here on earth holding on to us, constantly trying to pull us together for a big group hug and kiss.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">She was a gift.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">A gift that our family will carry with us until we see her again.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Our family will always be 5 strong.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Throughout Faith’s life, our family has rallied around her and nurtured her and raised her the best we knew how. All of the while we have cherished this gift.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Little did we know that this gift was not intended just for our family. God’s plan is always bigger.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">One of Ashley and My favorite stories is when Ashley and the Kids were out shopping at garage sales. Ashley was excited about the purchase of some wash clothes and as she was headed back to the van she yelled to Elizabeth “look what I got for Faith”. The lady who was running the garage sale, a total stranger, shouted to Ashley “wait are you Faith’s Mom”. Ashley was surprised by the question and answered “yes”. The lady responded “I read your guy’s blog every day and pray for you guys”.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">This type of thing happened on more than one occasion.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">As you look around this room you will find so many who have been touched by her story.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Faith thought that everyone needed big group hugs and she is still giving them.</span></div><br /><br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">As her story continues to pull at your heart, know that it is her. Her grip is not strong, but she is trying to pull you towards Jesus in her tender way.</span></div><br /><span style="font-family: Arial; font-size: 14.66px; vertical-align: baseline;">Please receive this gift, carry it with you as you go, feel free to share it with others, until we come to see her again in heaven. </span>Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com2tag:blogger.com,1999:blog-8194448814607226139.post-62694316542382301002015-09-17T22:10:00.002-07:002015-09-17T22:10:50.791-07:00It is now September 17, 2015 and I can tell you a week ago I would of told you all the Faith is 100% back to base line and even better! <br />
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We have said goodbye (still crying) to Amy, Faith's nurse of 3 years. She moved to Washington. We have hired a new nurse, Hanna! She has been with us since summer 2015 and she is fitting it well! She works Monday- Thursday. Faith (and the family) really like her. She pushes Faith to do her best and gets all the daily duties for Faith done, and that's ALOT!!<br />
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All her face muscles are back!! She does still have a slite issue with one of her eyes pulling in some. Every time we go to the eye doc she is always impressed how well Faith's eyes are doing. The doctor told me years ago Faith is one of her only patients with SB (spina bifida) and not wearing glasses. ;) Her eye pulling keeps getting better and there was talk of going to the OR to have it fixed but no talk anymore, at least at this point.<br />
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Faith is walking with her walker faster and better, then she ever has! A new brace for her right leg and it really helps with walking and standing. It is called a KAFO (knee, ankle, foot, orthosis). She walks easily 40 feet, which is a long way! We have her free stand next to a table for one of many of her daily exorcises and she will stand or an hour with no break if we would let her.<br />
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School for Faith has opened up a whole new Faith! She LOVES school, her teacher is amazing, we love Ms. Hanni!! I really didn't want to send Faith to school yet but, I knew she really wanted to go and that she would be protected by God. But you must remember that not only is she my youngest but she has all these needs and she wouldn't be in the same school at the older two siblings. But after talking to and seeing her teacher, Ms. Hanni work with the students I became so much more at peace with Faith being at school. She is in pre-school Monday-Thursday in the afternoons only.<br />
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Really, I can't tell you in words how proud I am of Faith, for how far she has come since last October!! The doctors said she wouldn't make it, but here she is still on earth with her "Mama", the ONLY word she can speak with her voice. I feel soo blessed, because when Faith does speak with her voice she says my name. I know that is selfish, but it's true. I pray that one day she will say Dada. I think she can do it!<br />
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Now back up one week from today to, Friday, September 11. We have hired a new nurse that only comes on Friday. Since I work in the morning Monday- Friday we needed someone to watch Faith on Friday since Hanna is Monday-Thursday. It was the new nurses 2nd Friday, her and Faith and Mic got a call at work from her say "Come home now, Mic!!!" He of course went right away and was home with in minutes. Faith was not breathing and the nurse was doing chest compression. They got her to start breathing again but she was just lying there in her bed not moving, but oxygen levels were 100%. So the best way to describe it is, it was like she was in a comma. She ended up not moving her arms or legs for a little over an hour. It was really hard to see her this way. Normally ( i laugh saying normally) when she passes out, she snaps out of it pretty quickly and back playing in no time at all. The nurse said Faith didn't want to do an exercise, and got mad and passed out. Faith does get mad and pass out often but not as much anymore. That all happened in the morning and by 8 pm she had been sleeping for about 2 hours and I went in her room to check on her and she saw me and reached up with both arms fully extended and gave me a big hug and in that moment I said THANK YOU JESUS!! She has regained control of her arms! By the next morning she was what I thought 100% back but when we were walking she is still really weak. Please pray she will regain the strength in her back and legs to be able to walk like she use to. I know time is the enemy, isn't it always? :)<br />
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8194448814607226139.post-62551111199206725142014-12-07T15:12:00.001-08:002014-12-07T15:22:14.248-08:00<div dir="ltr" style="margin-bottom: 0pt; margin-top: 0pt;">
<span style="color: white;">On the morning of Friday, October 24, 2014 Faith’s nurse, Amy, was just getting Faith out of bed around 7:15am. Amy yelled out “Ashley, come look at Faith’s eyes.” So, I went into her room to take a look at her eyes.They were not tracking the same. One eye was looking one way and the other, the other way. I didn’t think to much of it because it was morning and things like this happen all the time. Many times, with Faith, something will not be normal in the morning and then later that day everything will be back to normal. I was going out of town for the weekend and so I had Mic to come and check it out since he was going to be in charge of her for the next few days. Fast forward to about 4:00PM the same day. I called Mic to check in and he told me that Faith was still not tracking and was more drooly. Then there was a short silence. And I said “What else?” I could tell there was something he wasn’t telling me. He said “Faith has stopped smiling. She is unable to smile.” I said “You had better call the doctor and tell her just to keep her updated.” Mic called and they ended up going to the ER at Children’s Mercy Hospital Friday evening. Faith’s doctor was concerned there could be a shunt malfunction. At the ER, Faith had some xrays and CT of her head. All was well with the shunt. The ER sent them home.<br /><br />Monday, October 27, 2014 Mic and I went with Faith to a routine doctor visit with the Endocrinologist in Kansas City. This appointment had been scheduled for months. As we were leaving the Endocrinology office, Faith’s primary doctor at CMH (children’s mercy hospital) called and asked if we were still in Kansas City. She asked us to come to her office at the hospital so she could get a better look at Faith and hopefully to get her in for some more testing. When we got there the doctor was looking Faith over and asked “When did she stop blinking?” Mic and I had no idea that Faith wasn’t blinking any more. The doctor admitted Faith to the hospital for an MRI and requested the neurosurgery doctor look it over. <br /><br />Tuesday, October 28, 2014 MRI complete<br /><br />Wednesday, October 29, 2014 Neurosurgery talked to us and said he wished Faith had a “healthier spine”. Well, we all wish that. He didn’t say much more. He did say we will just have to wait and see if she gains her control back in her face. Complete side note: She knows when she needs her nose or mouth suctioned or wiped off. She can feel her hair on her face. But she can’t smile, blink or move her nose. To me totally weird. <br /><br />Friday, October 31, 2014 I got a text while at work from Faith’s nurse saying, she can’t wake up Faith from her nap. Fast forward about 30 mins. I went home and when I got there Mimi and Papa (Doc and Phoebe) were there.<br /><br />This day was Amy’s (Faith’s nurse and Best Friend) last day with us and my parents came over to tell Amy goodbye. They didn’t know Faith wouldn’t wake up. But Faith is totally in LOVE with my parents and she woke up at the sound of their voices. Amy has been with Faith for 3 years and with Faith being 3.5 years old it’s a big deal that Amy is no longer with us. :( I am still having a hard time with no Amy. She became part of our family and one of MY dearest friends. She wasn’t just a nurse to me she was my helper. She treated all three of my kids as if they were her own. She didn’t take care of just Faith, she took care of all of us. I never had to doubt anything she did or her question her judgement on anything EVER. I miss her SO much! Amy moved to Washington State to be close to her father. She has a new job being a nursing director and I’m sure she is Amazing!<br /><br />It is now December 7, 2014 and Faith has gained some control in her face. Her right side is better than her left. She is now able to wink not blink but wink her right eye on command. It’s so strange that someone can wink but not blink. I am still learning new things about the human body almost everyday from this girl. She is pretty much base line (back to her normal self) other then her face muscle control. She is back to being her cute sassy self.</span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-76944510854419375152014-04-29T15:55:00.002-07:002014-04-29T15:58:32.787-07:00New Found Freedom<div dir="ltr" id="docs-internal-guid-904b37d8-afb1-0d0f-2501-479772666116" style="line-height: 1.15; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: white; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">There has been a lot going on in Faith’s life good and not so good. Well I will just be touching you up on the latest. We have been waiting on a wheelchair for her for a while now. First we had to wait on the insurance then we ordered it and it takes about 2-3 months to come in. But we got it and Faith loves it! It has opened a new adventure for all of us. She has never had to “stay with us” in public places because she has always been in our arms or in her stroller. Also new to her is hearing “you can’t go over there” and “wait for us”. So interesting that all this is new for a 3 year old. I just love seeing her in it! One more small step closer to her being more independent. I am very ready for this independence. I remember when she started crawling EVERYWHERE I love it!! Below is a video of Faith on day two of her wheelchair.</span></div>
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<span style="background-color: transparent; color: white; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I am going to change the subject a little and say that I look at my life after I was married but before kids and think I am so blessed to be married to my best friend. Wow that was 10 years ago and here we are still totally in love and still Best Friends. I wouldn't be able to do to my day to day things without this man in my life. Oh how I love him. Then we had Mason and I thought if Mic is half the Dad that I had growing up then Mason will live a life better than most. Mason is my tender hearted, helpful, loves others more than himself, soccer player boy. Here we are 7 years later and WOW, Mic has been a wonderful Dad!! (Well of course no Dad is better then mine ;) ) Then we had Elizabeth and I thought I am so excited to had a girl with the challenges that come with that. I hope and pray that I can be my daughters friend as my mother is my friend. Always there that no questions asked. Mic got his princess, ballerina, soccer player. Being a father to girls is a fine line of not meaning to push them away but letting them know you are always there for them. Mic is the best dad to Elizabeth. She is a special little thing. Then we found out I we were pregnant once again and decided to not find out the sex of the baby. I thought I wouldn't be able to handle this but it ended up being a blessing. We went in for monthly sonograms in KC at a specialist and they never told us what the sex was. Then came delivery day and it was the one thing I was looking forward to, the one thing that was going to be for sure. I was going to find out the sex of my baby. I wasn't sure if this baby was going to survive the delivery, but I would get to find out the sex. Then before the Doctor was able to say the sex for sure Mic saw it and leaned down and said, “Ashley it’s a girl!” one second later the doctor says “It’s a girl!” . I started to cry. I was not able to see or hold my baby and I knew that was going to happen, but I had no idea it was going to be so hard to see her in a little bed next to me and not be able to really see her. She was on her tummy with a gigantic hole in her back. And that is where the adventure started with her…. And here we are today, Mic and I still together and more in love than ever before! I will repeat myself and say He is my best friend the one and only I share my true self with the one and only who knows me better then I know myself sometimes. Why did I share all that? Because Jesus loves us more than we can even grasp, more than I love my children or my husband. Crazy to think about. Would you die for your family? Your response of course is yes but if some stranger had a gun to your head it would be a little more real. Would you still do it? I remember hearing about a story where the grade school student was in the school where the shooter was and she was proclaiming his name and the shooter asked her do you love this Jesus? She responded yes i do love him. He shot her. She went down Loving Jesus to the last second of her life. I just pray that I would do that and that my kids would too! Who ever you were you made an impact on my heart and where her parents are Jesus is soo proud of you! </span></div>
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<span style="color: white; font-family: Arial; font-size: 15px; vertical-align: baseline;">Having Faith has been wonderful. I look back over that last three years and think about everything I have learned medically and how my perspective has changed on so many things. What, you don’t like it when your child won’t stop talking, talk back to you, or won’t stop screaming because they aren't getting what they want? I would LOVE her Faith to say one word with her sweet voice that I know is in there somewhere. One word! That’s all I want, one word. BUT then I think about all the women who can’t have their own baby, or lost a baby and in that moment I praise Jesus for giving me a warm body that smiles at me all the time to hug. Yes I get frustrated because she can’t talk but I know I am blessed with what I have!! </span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8194448814607226139.post-85285302267825081232014-04-21T14:22:00.000-07:002014-04-21T14:22:36.338-07:00A couple weeks ago Faith got her big girl bed!! She is so proud and is doing great in it!!
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsW2IJHtQxUpDSXCogLMHk_jNHmp2CO6p8aizDj1U7EAeujQSqctyUDxE_dUmtVeq8iRM1Sp-dH2EYMElHsgBPJ708SBwmhi1A168QCyQg7ppCdLJ1GwG8n3gHGt9lKBtZeG4JZZO3wE/s1600/20140404_202704.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQsW2IJHtQxUpDSXCogLMHk_jNHmp2CO6p8aizDj1U7EAeujQSqctyUDxE_dUmtVeq8iRM1Sp-dH2EYMElHsgBPJ708SBwmhi1A168QCyQg7ppCdLJ1GwG8n3gHGt9lKBtZeG4JZZO3wE/s320/20140404_202704.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_G0Cv9zSzLIH566nW4rEJicmipc-mV9SRwYk7klpxilTct9EFZW1ycCqcgaEYu434-uQGiOhiO_0xrMkut6pm85nzB0YVLe38WNt0G_Wcx89p_jzf4Je2Ma30n_iYtdh6-JwSMUnxJJU/s1600/20140404_200519.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_G0Cv9zSzLIH566nW4rEJicmipc-mV9SRwYk7klpxilTct9EFZW1ycCqcgaEYu434-uQGiOhiO_0xrMkut6pm85nzB0YVLe38WNt0G_Wcx89p_jzf4Je2Ma30n_iYtdh6-JwSMUnxJJU/s320/20140404_200519.jpg" /></a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8194448814607226139.post-60121906234007532432013-09-02T20:08:00.003-07:002013-09-02T20:08:39.144-07:00Faith Shows Off Her Signing Skills<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/rS96X-n3IS8" width="420"></iframe><br />Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-8527513442133881182013-09-01T22:49:00.000-07:002013-09-01T22:49:46.207-07:00Recap to UpdatedWhen Faith was four months old we had her trach placed. She started having these pass out spells. At the beginning the spells were of course scary because they weren't "normal" pass outs. We had LOTS of people giving us advice on how to get her to stop from passing out. The number one bit of advice was to blow in her face and then she'll catch her breath. The only problem with that is you can cover her nose and mouth because she breaths through her trach. So the blowing thing doesn't work on her. The doctors and specialist at CMH (children mercy hospital) haven't even see anyone have these pass out spells at A)this young of an age and B) drop her oxygen levels so fast. The doctors had to call the manufacture of some of the machines they were using on Faith to get approval because they had never been used on newborns before at CMH. Little did we know these pass out spells were going to be the worst of all of it. When Faith was a newborn to age 2 (in December 2012) her pass out spells were not good, they have never been good, but they were always quick-pass out come right back. During a pass out she stops breathing, skin color changes then she takes a breath all in about 1 min. Then she is back to normal and playing. CRAZY right!?! Well, that's her life since 4 months. Now sometimes she will go days or weeks, without having a single spell. But on other hand some days she will do this 4,5 or 6 times a day. Up until now the pass outs have been quick, of course I was SOO worried about her. Why is she doing this? Not a single doc then or now have an answer. Now she has grown the spells have started to get more intense. Some of her spells her hearts stops beating (we feel her chest, no beat, we listen, no beat) she ALWAYS turns color, blue and gray skin color (maybe a little too much info, but like I said I have been living with this for 2 years) NO ONE should EVER see a child especially their own child GRAY. Faith sleeps with the ventilator at night and naps. So now when she passes out we put the vent on her and also extra oxygen. She has even passed out while on the vent-which sounds crazy to me! But nothing surprises me with that girl anymore. Before we had the vent at home we would use the ambo bag (like mouth to mouth but for a trach). The vent is nice because you just turn it on and attach it to her and you don't have to worry that you are pushing to much air into her or pushing the air in to fast to end up hurting her lungs. They are little lungs, they can only hold so much. :) We now have our vent with us all the time, everywhere we go. Faith doesn't care where she is, she will pass out anywhere. We always have to be ready. She has passed out many places, library, church, restaurants, parks, stores and of course doctors office. The CRAZIEST thing to me is that she is the happiest little thing all the time except when she is passing out. sounds crazy right, its true though. So now you are probably thinking what gets her to pass out?, right?? Remember she is 2 1/2 years old so there's the fits of not getting what she wants. She can't speak and only knows about 50 signs and that's a lot of sign but not enough to tell you why she is so mad. And of course there is the pass out that we have no idea why. So nut shell 1.doesn't get what she wants 2.Plain Mad at you. 3.Way too tired. 4.no idea. Sometimes (more lately since she has been growing) her pass outs are up to 4 mins with no breathing. There are many times Mic, Amy (Faith's nurse) and I are guilty of thinking I think this might be it. But normally right when we think that Faith takes a breath. Mic and I joke that Faith has FOR SURE seen Jesus for how many times she had these spells. Please pray for Faith and her spells. Also pray for my other children Mason Age 6, who helps me with Faith when Amy and Mic aren't around. He has seen way to much for a 6 year old. Pray for Elizabeth my 5 year old. There are a lot of things that go on with Faith that I wish Mason and Elizabeth didn't have to worry about or see. They are really good about having patience with her and accepting her the fact that their sister can't talk or walk. Elizabeth is our sign language interrupter. She is a pro! :) Sounds silly but if you are ever around and can't figure out what Faith is saying ask Elizabeth, she'll know. Thank You for all your prayers!! Mic and I are very blessed to have a wonderful support team! -AshleyUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-73086524268899288422013-06-11T20:51:00.000-07:002013-06-11T20:51:35.223-07:00sammie dawn photography<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYl3HLEbYdrEJP9YSLUtff1dLjY1FjmLiIWuc_HcbIW2eRKPcHPoH-WP_U0sbaeQe8PMT7hyphenhyphenxV90SSCuaQzRNKn1FF4TNjLfVRGH39db8lEFkjiL7HszrRUvAIArd8tr8XuJG3aAa_Jkw/s1600/IMG_7871.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYl3HLEbYdrEJP9YSLUtff1dLjY1FjmLiIWuc_HcbIW2eRKPcHPoH-WP_U0sbaeQe8PMT7hyphenhyphenxV90SSCuaQzRNKn1FF4TNjLfVRGH39db8lEFkjiL7HszrRUvAIArd8tr8XuJG3aAa_Jkw/s320/IMG_7871.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBBOTMfgn8hpzcotaEJ2ZQBsc6xVTpWgdXctIoiegwnWGLW8EusScuR1CxgQjtUho_kkbtd-W1G4cG9Uso9FaFv2A70xNzMvHuzVuKHMt7lxwbTl4q_2upi-BxAyoaPIq1wyoubYZ0f8c/s1600/IMG_7860.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBBOTMfgn8hpzcotaEJ2ZQBsc6xVTpWgdXctIoiegwnWGLW8EusScuR1CxgQjtUho_kkbtd-W1G4cG9Uso9FaFv2A70xNzMvHuzVuKHMt7lxwbTl4q_2upi-BxAyoaPIq1wyoubYZ0f8c/s320/IMG_7860.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw0J8sRQEFT-Ykc4ljj31jD4ThQuHTvoQ-4Rh1iw2J_7YSWYVgQyEgQcI5OddHTn_2Ac5qI2knkZeft_DtRONo_evhr-pFqAC5InTM1P-CLcVDNHaOwrFQ0rf-wSeIiMmfrZeUzwOyh_Y/s1600/IMG_7841.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw0J8sRQEFT-Ykc4ljj31jD4ThQuHTvoQ-4Rh1iw2J_7YSWYVgQyEgQcI5OddHTn_2Ac5qI2knkZeft_DtRONo_evhr-pFqAC5InTM1P-CLcVDNHaOwrFQ0rf-wSeIiMmfrZeUzwOyh_Y/s320/IMG_7841.jpg" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-54619983610773859012013-06-11T20:49:00.000-07:002013-06-11T20:49:26.624-07:00Faith's Best Friend her nurse Amy!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhua8xMRnyG9UinXejS-YATlJr0QaPfjYvqY5Yb2i8oGM7HIl0OAnHUJsF6F29tOaupzeaMWc-iG2NKKBw0Q7OOQOUOA0X3r-A6_FYavFjJywpxhIxB4FRXgPJRVjXtsUiyrfzzVsUu41U/s1600/IMG_8000.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhua8xMRnyG9UinXejS-YATlJr0QaPfjYvqY5Yb2i8oGM7HIl0OAnHUJsF6F29tOaupzeaMWc-iG2NKKBw0Q7OOQOUOA0X3r-A6_FYavFjJywpxhIxB4FRXgPJRVjXtsUiyrfzzVsUu41U/s320/IMG_8000.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifWuOouZvFrR6rOHXYrGUzTdXyzXfi6AiipE55oIoeoSEN8XrCszcP9eW-WgGMKF7VFjDhuSTryU4JPiYJBB6fvQ4cKfD0aBY-ZUNgUG78AbonAm2WwaRplJ7gj6dkdp4dP8ukPZZZ7fg/s1600/IMG_8002.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifWuOouZvFrR6rOHXYrGUzTdXyzXfi6AiipE55oIoeoSEN8XrCszcP9eW-WgGMKF7VFjDhuSTryU4JPiYJBB6fvQ4cKfD0aBY-ZUNgUG78AbonAm2WwaRplJ7gj6dkdp4dP8ukPZZZ7fg/s320/IMG_8002.jpg" /></a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8194448814607226139.post-18033939230417181842013-06-11T20:47:00.002-07:002013-06-11T20:47:49.594-07:00Turning a LeafWe have been through tough times since we last posted. But the bright side is that, that tough time is over and we are seeing some progress!!! First, Faith has started to be interested in crawling!! She wants to be where she wants to be. :) Let me tell you what I mean by crawling, army crawling, dragging her legs. Her legs aren't strong enough for her to be on all four. Crawling is wondering! She still needs help actually moving, we push her bottom VERY little and she is off!! This is a BIG milestone. People don't understand that you have to move her every inch she wants to go. She can't move on her own really at all. So I am VERY excited about this! In this process of learning how to crawl she has been learning to also spin on her bottom, which she is becoming a pro at!! Also getting in and out of sitting by herself. Lots of Physical Therapy! She is getting stronger everyday!
Today 6.11.13 we made a trip up to Children's Mercy for a swallow study. This is once again a BIG milestone appointment. If she fails this there can't be another study done for 9-12months due to the radiation she is exposed to. Faith has been only getting her nutrition (milk) via her g-tube (feeding tube placed in her tummy) straight into her stomach. We started about a couple months ago intruding foods like applesauce, BBQ sauce and other foods at the constancy but she would FIGHT us and pucker her lips together like no ones business. Well that wasn't a good sign. So one day about a month later we started again she was a little into it but not as much as she needed to be (we were using a spoon to feed her). Then one day I came home from running around town and Faith's nurse, Amy said to me "well I was eating my chicken nuggets for lunch and dipping them in Ranch and Faith wouldn't stop watching me. So I asked her if she wanted some ranch and she said yes (using sign language) so I got her some ranch and DIDN'T use a spoon". With NO spoon she has been eating like a champ!! So today was the test and for the FIRST time since Faith was 3 months old she had a DRINK and it was with a REAL CUP!!! I couldn't even believe it and neither could Mic!! My Faith was using a CUP!!oh and taking a DRINK!!! Oh Lord you are so good to us!! Her feeding therapist said the test went much better then she thought it was going to go. That was a good sign! There are three different thickeners to use Honey, the thickest Syrup, the middle thickness and Nectar, the least thickness. She passed with using Nectar!! They also said Faith needs to work on learning how to get the food/drink in her month to the back with using her tongue every time. She did really well but not every time. The more she eats/drinks the better she will become!! Bring on summer and lots of DRINKS!!!! :)
Going to try to update at least once a month. Thanks for reading!! Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-9367134375485387282013-01-02T19:57:00.001-08:002013-01-02T19:57:36.762-08:00<b>December 27th, Happy 2nd Birthday Faith!!</b>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8194448814607226139.post-30242923953900690542012-09-22T12:26:00.000-07:002012-09-22T12:26:08.688-07:00SPECIAL 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 PfeiferUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-49066234079214968112012-09-22T04:44:00.001-07:002012-09-22T04:44:24.317-07:00COME 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!!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-53481134996111626332012-08-28T13:55:00.009-07:002012-08-29T06:05:59.036-07:002nd 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.<br /><br />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.<br /><br /><a href="https://docs.google.com/open?id=0B3WSbA1sBtn8Sm00NGpPOW54blk">Run With Faith Registration Form</a><br /><br />To keep in the loop, check out the <a href="http://www.facebook.com/pages/Run-with-Faith/140060469416680">"Run With Faith Facebook Page"</a>.<br /><br />Here is the video from last years race. Check it out!<br /><br /><iframe height="315" src="http://www.youtube.com/embed/4tdNOSNVLUc" frameborder="0" width="420"></iframe><br /><br />Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com1tag:blogger.com,1999:blog-8194448814607226139.post-14554672126541629732012-08-17T12:03:00.000-07:002012-08-17T12:03:04.240-07:00Come and Run/Walk with us!!!!<span class="userContent">It's official!!! The 2nd Annual Run with Faith will be October 20, 2012!!! Details coming soon!!!!</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-27722676751479597822012-08-15T19:54:00.001-07:002012-08-15T19:58:26.112-07:00Faith Plays with Duplos<iframe height="315" src="http://www.youtube.com/embed/EYMidYyE9W0" frameborder="0" width="420"></iframe><br />Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-79032555429819843432012-08-14T05:58:00.000-07:002012-08-14T05:58:33.409-07:00July updateSorry 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. <br />
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.<br />
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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.<br />
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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. <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrJ3uEiEp49X2e8KC_-iV0SHWuCM6SNnIee2TWsXJ4hyFozmel-lApuXuFwoEWGokRR21s8oJovMffCVA5n5K0ZzVeEuJ5NQuX6ip-eBCfjFXKuF5fNa2UHvJD3tGBRWvFCoCYEOPczic/s1600/July+2012+031.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" mda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrJ3uEiEp49X2e8KC_-iV0SHWuCM6SNnIee2TWsXJ4hyFozmel-lApuXuFwoEWGokRR21s8oJovMffCVA5n5K0ZzVeEuJ5NQuX6ip-eBCfjFXKuF5fNa2UHvJD3tGBRWvFCoCYEOPczic/s320/July+2012+031.JPG" width="320" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-91750067229793830192012-03-12T20:42:00.005-07:002012-03-13T13:06:40.510-07:00Tickled Pink<div><span style="font-family:Georgia, serif;"><span style="font-size:100%;">Amidst the difficult issues </span></span><span style="font-family:Georgia, serif;">described<span style="font-size:100%;"> 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 </span></span><span class="blsp-spelling-error" id="SPELLING_ERROR_1" style=" font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family:Georgia, serif;font-size:100%;">Pfeifer</span><span style="font-family:Georgia, serif;"><span style="font-size:100%;"> 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.</span></span><br /><br /><span style="font-family:Georgia, serif;"><span style="font-size:100%;">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 </span></span><span class="blsp-spelling-error" id="SPELLING_ERROR_2" style=" font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family:Georgia, serif;font-size:100%;">trys</span><span style="font-family:Georgia, serif;"><span style="font-size:100%;"> 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 </span>mobility<span style="font-size:100%;"> 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.</span></span><br /><br /><span style="font-family:Georgia, serif;"><span style="font-size:100%;">At first we thought it was a balance thing. We thought, "Maybe she is just disoriented and she can't sit up". Balance being </span></span><span style="font-family:Georgia, serif;">associated<span style="font-size:100%;"> with your ears, we called our "on call </span></span><span class="blsp-spelling-error" id="SPELLING_ERROR_5" style=" font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family:Georgia, serif;font-size:100%;">ENT</span><span style="font-family:Georgia, serif;"><span style="font-size:100%;">" (Ashley's Brother) After a short house visit he said her ears look just fine and we dismissed the theory.</span></span><br /><br /><span style="font-family:Georgia, serif;"><span style="font-size:100%;">We then called our "on call Therapist" (Ashley's Mom). After some brain storming with </span></span><span class="blsp-spelling-error" id="SPELLING_ERROR_6" style=" font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family:Georgia, serif;font-size:100%;">Pheobe</span><span style="font-family:Georgia, serif;"><span style="font-size:100%;"> it had come to mind that Faiths Neurosurgeon had mentioned, that the </span></span><a href="http://pfeiferpage.blogspot.com/2011/04/breathing-101.html#comment-form" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span class="blsp-spelling-error" id="SPELLING_ERROR_7">syringomyelia</span> in her spine</a><span style="font-family:Georgia, serif;"><span style="font-size:100%;"> 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.</span></span><br /></div><br /><br /><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;">My </span></span><span class="blsp-spelling-error" id="SPELLING_ERROR_8" style=" font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family:Georgia, serif;font-size:100%;">assuredness</span><span style="font-family:Georgia, serif;"><span style="font-size:100%;"> of the situation brought to memory the </span></span><span style="font-family:Georgia, serif;">original<span style="font-size:100%;"> conversation with our</span></span><span style="font-family:Georgia, serif;"> neurosurgeon<span style="font-size:100%;"> about the issue. The </span>surgery<span style="font-size:100%;"> to correct the </span></span><span class="blsp-spelling-error" id="SPELLING_ERROR_12" style=" font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family:Georgia, serif;font-size:100%;">syringmyelia</span><span style="font-family:Georgia, serif;"><span style="font-size:100%;"> is invasive, high risk for potentially little reward. I remember he did not want to do the surgery unless things were getting </span></span><span style="font-family:Georgia, serif;">progressively<span style="font-size:100%;"> worse. It left us both not quite sure what we were hoping for from the MRI results.</span></span></div><div><span style=" ;font-family:Georgia, serif;font-size:100%;"><br /></span></div><div><span style=" ;font-family:Georgia, serif;font-size:100%;">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</span><span style="font-family:Georgia, serif;"> anesthesiologist<span style="font-size:100%;"> 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.</span></span></div><br /><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">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!!</div><br /><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">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. </div>Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-2725736520210581692012-02-22T22:10:00.004-08:002012-02-24T10:40:37.077-08:00Moving Foward in a Cold FrontAs 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.<br /><br /><iframe height="315" src="http://www.youtube.com/embed/O5L4BjQpM7w" frameborder="0" width="420"></iframe><br /><br />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.<br /><br /><iframe height="315" src="http://www.youtube.com/embed/7AGcra9bWo4" frameborder="0" width="420"></iframe><br /><br />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.<br /><br />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.<br /><br />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.<br /><br />We love you all!<br /><br />Thanks for your prayers<br /><br /><iframe height="315" src="http://www.youtube.com/embed/-1BPUu6wYhk" frameborder="0" width="420"></iframe>Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com1tag:blogger.com,1999:blog-8194448814607226139.post-71797589511935604992012-02-12T13:38:00.000-08:002012-02-12T14:31:50.839-08:00Past Two MonthsFaith 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. <br /><br />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.<br /><br />Please pray for Faith's health and patience for Mic and I. Thank You!Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-38175572810834214412012-01-05T13:04:00.000-08:002012-01-05T13:04:46.206-08:00New Year New BeginningsA 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!!<br />
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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!<br />
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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! <a href="http://runningforfaith.blogspot.com/">http://runningforfaith.blogspot.com/</a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8194448814607226139.post-26622982028039839652012-01-02T15:03:00.000-08:002012-01-02T15:03:48.912-08:00Hello One Years Old!!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0CKVAbe97Rl_YsoH26mVHQZnSVSpuQ-XQQqCgcqKEbbxrEW93qcT_qRAaPkH8IgIe_YfM3B_YppdkNsGxHLzBtErxHqhOWbHMNjHD9ss-M9RHvYU5MyouwOSPlrHgb1IIupD55-kaRnY/s1600/Faith+Bday++1+023.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0CKVAbe97Rl_YsoH26mVHQZnSVSpuQ-XQQqCgcqKEbbxrEW93qcT_qRAaPkH8IgIe_YfM3B_YppdkNsGxHLzBtErxHqhOWbHMNjHD9ss-M9RHvYU5MyouwOSPlrHgb1IIupD55-kaRnY/s320/Faith+Bday++1+023.JPG" width="240px" /></a></div><div class="separator" style="clear: both; text-align: center;">Peanut Butter Pie since she can't cake. :) BTW, she loved it!!</div><div class="separator" style="clear: both; text-align: center;"><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCJxuCyZRy8KoKiNO5cPKRzboxRdxOxh5nM2Qmk8oP4vmiy2gref8OgwpT0oXv65OejeJjDkLthzHuzVMtvu5cARMOLXWrM-TKmTZOwOxZD4TS7ekbqpR4bjSdEf6dZ5TYMXxsXixtBN0/s1600/Faith+Bday++1+029.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCJxuCyZRy8KoKiNO5cPKRzboxRdxOxh5nM2Qmk8oP4vmiy2gref8OgwpT0oXv65OejeJjDkLthzHuzVMtvu5cARMOLXWrM-TKmTZOwOxZD4TS7ekbqpR4bjSdEf6dZ5TYMXxsXixtBN0/s320/Faith+Bday++1+029.JPG" width="320px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">She Loves being a toddler!</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCWlP7_FKKvVvQByfNz-6cTlBl51pasa3lEoVEu5_SylQ_3w_fTTHqxRGyQzfsEX78Z3gyJcPOVLXaj9E4tigzfh-G-KQ4crpQNkN8UwTsgSDZg-Rz2W37mexz_q64BmsAKDXJX1b2xT4/s1600/Faith+Bday++1+030.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCWlP7_FKKvVvQByfNz-6cTlBl51pasa3lEoVEu5_SylQ_3w_fTTHqxRGyQzfsEX78Z3gyJcPOVLXaj9E4tigzfh-G-KQ4crpQNkN8UwTsgSDZg-Rz2W37mexz_q64BmsAKDXJX1b2xT4/s320/Faith+Bday++1+030.JPG" width="320px" /></a></div><div class="separator" style="clear: both; text-align: center;">A year in pictures.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8194448814607226139.post-12905953476859428192011-12-26T20:23:00.000-08:002011-12-26T20:23:35.202-08:00Merry CHRISTmas!!!!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFRdanXxuUXKj0hXC4mbulAJVPg1dffd2G1L8CQ05j4_R6SkQb_5SnaFfNa6Wwmc_lLcKFIbZA4WcC5D1IDlimF8xHSWqTmtI1eEL9dhy08Ty0DNmQ5WAjYopLQhm1g3AxFz6T8ihJWTk/s1600/December+2011+051.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" rea="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFRdanXxuUXKj0hXC4mbulAJVPg1dffd2G1L8CQ05j4_R6SkQb_5SnaFfNa6Wwmc_lLcKFIbZA4WcC5D1IDlimF8xHSWqTmtI1eEL9dhy08Ty0DNmQ5WAjYopLQhm1g3AxFz6T8ihJWTk/s320/December+2011+051.JPG" width="212px" /></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8194448814607226139.post-70125003671179579512011-11-08T17:20:00.000-08:002011-11-11T06:02:05.214-08:00Spina Bifida Clinic<div>Last week Faith had her semi-annual Spina Biffida Clinical appointment. During this visit Faith's entourage of Doctors & Therapists come to the clinic and check up on Faith to see how she is progressing. It is a great appointment for the Doctors to regroup and adjust the plan for continued growth and therapy and discuss any issues that we are encountering along the way. All of Faith's Doctor's love seeing her and they are encouraged to see how well she is doing. During this visit we received tons of great news.</div><br /><br /><div><strong>New Doctor</strong></div><br /><div>During this visit we were privileged to meet Faith's new primary doctor at Children's Mercy, Dr. Gratny. Dr. Gratney is on a special team dedicated to kids on ventilators. This team will be on call for Faith 24/7, a nice perk for Vent kids... Faith somehow knows how to get all the perks :) Dr. Gratney spent some time with Faith and got to know her pretty well (Faith let her see one of her blue spells). Dr Gratney seems very nice and is definitely going to be a great advocate for Faith's health and development.</div><br /><br /><div><strong>Lungs</strong></div><br /><div>Dr. Escabar (the Pulmonologist) was very encouraged by Faith's improvements over the last few weeks. After about a week of being on the ventilator at night Faith has been able to support herself throughout most of the day without the use of oxygen! PTL!!!! Dr. Escabar's plan is that Faith will continue to be on the ventilator at night to help expand her lungs and prevent apnic events. His hope is that after couple of weeks with a good track record, Faith can go without oxygen or a monitor all day! Come on cordless baby!!!</div><br /><div>While Ashley and I do share Dr. Escabar's enthusiasm, we are very nervous about taking Faith off of the monitor. We do not want to risk Faith's health just to get rid of a piece of equipment and she has a tendency throw us curve balls from time to time. Please pray for continued improvement on her part and wisdom on ours as we prepare to make this transition.</div><br /><br /><div><strong>Urology</strong></div><br /><div>People have been asking how Faith's kidneys are doing. To hear that Faith's reflux had gotten so much worse was very concerning, even for us, but during this appointment Dr. Murphy (the Urologist) informed us that her kidney's are just fine. We are now cathing Faith every four hour's during the day as a preventative measure against kidney damage and infection. This sounds like a lot of work, but it really is a very simple procedure and is just a quick step during her diaper change. It was great to here that no harm had been done to Faith's kidneys. PTL!</div><br /><br /><div><strong>Occupational Therapy</strong></div><br /><div>We have been working very close with the occupational therapist in the last few months and Faith is taking more and more food by mouth all of the time. We have continued to push back Faith's swallow study until there is sure to be some information to be gained from it. Taking on baby foods is definitely getting easier for her. Over time we are to start watering them down to help her learn how to manage liquids without aspirating them into her lungs. It has been a slow process that has been very interesting to watch. Sometimes she just doesn't seem interested in eating by mouth. Who would have thought... a Pfeifer/Grindal who doesn't love to eat :)</div><br /><br /><div><strong>Speech Therapy</strong></div><br /><div>That's right... you heard me... we got to hear Faith talk!!! Dr. Gratney gave us a Passy-muir valve. Now that Faith is old enough and breathing without the help of oxygen we can place this device on the end of her trach. The valve allows air in through her trach but not out. The air that she breaths out is then force up through her normal airway and through her vocal cords, enabling her to make sound. And what a sweet sound it is.</div><br /><div>As expected she didn't like it at first, as you can see for yourself on the movie below, but as we continue to use it breathing out her nose and mouth won't be so strange.</div><br /><br /><iframe width="420" height="315" src="http://www.youtube.com/embed/wcYxSkjStJU" frameborder="0" allowfullscreen></iframe><br /><br /><div>We have been trying to make her laugh with the valve on, but it dosent seem to work to well. I think she laugh's so hard it makes her uncomfortable. Still fun to watch though.</div><br /><br /><iframe width="420" height="315" src="http://www.youtube.com/embed/BVbzAKhB3zc" frameborder="0" allowfullscreen></iframe><br /><br /><div>Thanks for your continued prayers.</div><br /><div>Love,</div><br /><div>The Pfeifers</div>Michttp://www.blogger.com/profile/02388636445251275163noreply@blogger.com2