Friends and Family,
Faith's Aunt Alison has so graciously put forth her time and efforts to organize a charitable run/walk for Faith. If you are interested in participating in the "Run With Faith" event click on the link below and follow the directions to get registered. Thank you so much, Aunt Alison, for all of your hard work. And thanks in advanced to all of you who plan on attending. We are humbled by your generosity and dedication.
Run With Faith
We love you all so much,
Mic, Ashley, Mason, Elizabeth, Faith
Tuesday, August 23, 2011
Wednesday, August 3, 2011
Update from last post...
Faith made it 3 weeks without passing out!! Then Sunday night she had another episode. This time we are shooting for 4 weeks!!!!
The ENT appointment went really well, actually better then I thought. Dr. Julie Wei said all positive things about Faith. She said that her neck and trach site looked really good and really clean. Go team Pfeifer for keeping it so clean! :) She also said she was going to scope her and I just looked at Dr.Wei and she said don't worry Faith taught me last time who's in charge. (last time faith turned blue and passed out) Dr.Wei went on to say she will be scoping her threw her tach. She won't feel a thing that way. It was really neat, I got to look in the scoop and see what she was talking about. Dr.Wei said Faith's skin color and airway looked "gorgeous". She thinks the larger trach is fitting well. As she was looking in the scoop she also said that it looks like Faith has some what of a floppy skin, which can be normal on some people. She said it could be a possibility that the floppy skin could be covering up the trach when she is baring down. Which would be like someone putting tape over your mouth and nose. Which then would lead her to passing out due to no air/oxygen passing through. That is just another theory but still no one knows for sure why she actully turns blue and passes out...
The OT appointment went really well too! So fun to see faith getting a spoon! She is getting thicken water. Sounds boring but it is a great start to hopefully getting rid of the feeding tube! Her at home therapy or practice before her swallow study is to have 5 spoons of thickened water every other day. We don't want her to aspirate (the water go in her lungs instead of her tummy) the water. We also put food coloring in the water so when we are suctioning her if we see the food coloring we know she is aspirating the water and will stop the the feeds and call the OT. So far NO aspirating!! We all take for granite that our tongue knows what to do when we put something in our mouth, we are retraining hers. She can eat/drink with the trach. The trach is down her airway or trachea and you swallow food/fluids down your esophagus.
Below is a picture of her with the blue thickened water and her spoon! Here she is about 6 1/2 months old.
The ENT appointment went really well, actually better then I thought. Dr. Julie Wei said all positive things about Faith. She said that her neck and trach site looked really good and really clean. Go team Pfeifer for keeping it so clean! :) She also said she was going to scope her and I just looked at Dr.Wei and she said don't worry Faith taught me last time who's in charge. (last time faith turned blue and passed out) Dr.Wei went on to say she will be scoping her threw her tach. She won't feel a thing that way. It was really neat, I got to look in the scoop and see what she was talking about. Dr.Wei said Faith's skin color and airway looked "gorgeous". She thinks the larger trach is fitting well. As she was looking in the scoop she also said that it looks like Faith has some what of a floppy skin, which can be normal on some people. She said it could be a possibility that the floppy skin could be covering up the trach when she is baring down. Which would be like someone putting tape over your mouth and nose. Which then would lead her to passing out due to no air/oxygen passing through. That is just another theory but still no one knows for sure why she actully turns blue and passes out...
The OT appointment went really well too! So fun to see faith getting a spoon! She is getting thicken water. Sounds boring but it is a great start to hopefully getting rid of the feeding tube! Her at home therapy or practice before her swallow study is to have 5 spoons of thickened water every other day. We don't want her to aspirate (the water go in her lungs instead of her tummy) the water. We also put food coloring in the water so when we are suctioning her if we see the food coloring we know she is aspirating the water and will stop the the feeds and call the OT. So far NO aspirating!! We all take for granite that our tongue knows what to do when we put something in our mouth, we are retraining hers. She can eat/drink with the trach. The trach is down her airway or trachea and you swallow food/fluids down your esophagus.
Below is a picture of her with the blue thickened water and her spoon! Here she is about 6 1/2 months old.
Sunday, July 24, 2011
Windshield Time
This week Faith will be seeing the ENT and the OT at Children Mercy Clinic. On Monday we will see the ENT for a trach check. Faith received a larger trach about three weeks ago. She went from a 3.0, which is the size she had placed originally, now moved up to a 3.5. Kinda fun, just shows she is growing! The ENT will just be following up with us. I really hope it is an easy appt. with no complications.
Then on Tuesday we will be seeing Faith's OT. This is a very big appt because she will be starting to practice putting fluid in her mouth. She will be having a swallow study on September 9 and this is to help her practice. She hasn't had anything in her mouth except for toys and her pacifier. We all take drinking and eating for granite. One thing she has to learn is what to do with her tongue when there is a substance sharing that space. She will also have to learn how to swallow larger amount of fluid. The only thing she is swallowing now is her own saliva. If she does well and passes the swallow study then we will be able to start giving her bottles again! I really pray that she adapts to all the new things that will be going into her mouth. I will also pray that she will continue to breath while she is swallowing. Before when she would drink from a bottle she we would have to turn her oxygen up and she would also drink to fast. I will keep you all posted. Thanks so much for all your continued support with our baby Faith!
Then on Tuesday we will be seeing Faith's OT. This is a very big appt because she will be starting to practice putting fluid in her mouth. She will be having a swallow study on September 9 and this is to help her practice. She hasn't had anything in her mouth except for toys and her pacifier. We all take drinking and eating for granite. One thing she has to learn is what to do with her tongue when there is a substance sharing that space. She will also have to learn how to swallow larger amount of fluid. The only thing she is swallowing now is her own saliva. If she does well and passes the swallow study then we will be able to start giving her bottles again! I really pray that she adapts to all the new things that will be going into her mouth. I will also pray that she will continue to breath while she is swallowing. Before when she would drink from a bottle she we would have to turn her oxygen up and she would also drink to fast. I will keep you all posted. Thanks so much for all your continued support with our baby Faith!
Tuesday, July 5, 2011
Growing
6 Months Old!
Hard to believe it has been 6 months!She is growing so well! She is now 17lbs and still a happy baby! She has three teeth all in front and on the bottom. I can start to feel something on the top so we will wait and see when their going to come in.
We went to clinic and saw the Pulmonologist at Children's Mercy, he recommended a bi-pap machine for Faith. This bi-pap will help with her levels of CO2 and help keep her lungs open all night. This machine blows air into her lungs and opens them and then pulls air out. I think this is going to be a good machine to help possibly get her off the oxygen during the day. If she can get her lungs open so she can take deep breaths then she won't need any help! Also, while we were there today we were talking about how Faith has been growing but yet she has the same trach as when it was originally placed. He sent us down to x-ray and then back to his office. He spoke with Faith's ENT and decided it was time for a new larger trach. I think this new larger trach will be more comfortable for her.
On Monday we went back to CMH via ER. Mic and I were telling Faith that we want to come home tonight and NOT be admitted as inpatient. When we arrived we went right to a room. (I guess if you have a shunt you get moved to the top of the list-no questions asked.) The nurse asked us and what brings you to the ER today? We found blood in her diaper. They changed her diaper to get her weight and there was more blood. The nurse said I am glad you brought her in. That made me feel better since we were thinking about waiting and calling in the AM. They took a urine sample and while they were getting it blood was coming out along with urine. They tested it and came back and said UTI. This would be Faith's third UTI in less then a month and a half. So there is some concern. We wait and see how she does on the drug they want her to take. Pray that it works!
Hard to believe it has been 6 months!She is growing so well! She is now 17lbs and still a happy baby! She has three teeth all in front and on the bottom. I can start to feel something on the top so we will wait and see when their going to come in.
We went to clinic and saw the Pulmonologist at Children's Mercy, he recommended a bi-pap machine for Faith. This bi-pap will help with her levels of CO2 and help keep her lungs open all night. This machine blows air into her lungs and opens them and then pulls air out. I think this is going to be a good machine to help possibly get her off the oxygen during the day. If she can get her lungs open so she can take deep breaths then she won't need any help! Also, while we were there today we were talking about how Faith has been growing but yet she has the same trach as when it was originally placed. He sent us down to x-ray and then back to his office. He spoke with Faith's ENT and decided it was time for a new larger trach. I think this new larger trach will be more comfortable for her.
On Monday we went back to CMH via ER. Mic and I were telling Faith that we want to come home tonight and NOT be admitted as inpatient. When we arrived we went right to a room. (I guess if you have a shunt you get moved to the top of the list-no questions asked.) The nurse asked us and what brings you to the ER today? We found blood in her diaper. They changed her diaper to get her weight and there was more blood. The nurse said I am glad you brought her in. That made me feel better since we were thinking about waiting and calling in the AM. They took a urine sample and while they were getting it blood was coming out along with urine. They tested it and came back and said UTI. This would be Faith's third UTI in less then a month and a half. So there is some concern. We wait and see how she does on the drug they want her to take. Pray that it works!
Monday, June 20, 2011
A Cherished Fathers Day
Yesterday we celebrated fathers day by dedicating Faith to the Lord at Topeka Bible Church. It was a bit nerve racking not knowing if we were going to get choked up while speaking to the congregation, but we did well to keep it together. Check it out below.
In preparing for the dedication it was good to reflect on all that has happened in the last six months. Being able to see how the Lord has worked in so many diffrent ways makes it easier to look foward into the unkown and trust that he has a plan. The heart felt support of our friends and familly, the drawing of believers and unbelievers alike toward a great and mighty God, and the strength and warm smile of our little girl Faith make a Dad proud to be just tiny piece of his of his great plan.
As I was thinking of all the things I would like to say durring her dedication, one of the thoughts that came to mind is how I would have asked for none of this (heck I still ask him to take it all away), but all of the wonderful things listed above would have never come to pass had Faith not been born the way she was. Looking back I wouldn't have it any other way.
Im reminded of our first post. Our verse for Faith remains unchanged. Jeremiah 29:11 For I know the plans I have for you, "delares the Lord," plans to prosper you and not harm you, plans to give you hope and a future.
Lord,
Thanks for the opportunity to be their father, to be able to see your great works through them and to know what it means to love, as you have loved us.
We got a good video of Faith laughing last week, enjoy! Oh yeah and thanks to everyone who came to her dedication, it really meant a lot to us.
As I was thinking of all the things I would like to say durring her dedication, one of the thoughts that came to mind is how I would have asked for none of this (heck I still ask him to take it all away), but all of the wonderful things listed above would have never come to pass had Faith not been born the way she was. Looking back I wouldn't have it any other way.
Im reminded of our first post. Our verse for Faith remains unchanged. Jeremiah 29:11 For I know the plans I have for you, "delares the Lord," plans to prosper you and not harm you, plans to give you hope and a future.
Lord,
Thanks for the opportunity to be their father, to be able to see your great works through them and to know what it means to love, as you have loved us.
We got a good video of Faith laughing last week, enjoy! Oh yeah and thanks to everyone who came to her dedication, it really meant a lot to us.
Saturday, June 18, 2011
Faith Dedication
Please pray for Faith and our Family as we will be dedicating Faith at church tomorrow.
We love you all Mic, Ashley, and Family
We love you all Mic, Ashley, and Family
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