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!
Sunday, July 24, 2011
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
Saturday, May 28, 2011
Faiths sleep study went well in the sense that they got the information that they needed. The process of hooking her up, however, did not go as smoothly as last time. The technician said that it is not uncommon for kids to dislike sleep studies the older they get. Check out the video.
As you can see Faith had a lot of gear hooked up to her and the process of getting everything put on her took about an hour. During this process Faith got mad, turned blue and passed out about three times, pretty much one right after another. It wasn't fun, but she slept well after we got her all wrapped up.
After the study was over the next morning, while we were taking all of the equipment back off of her, Faith had another three or four blue spells....but who's counting right. Faith was quite the trooper and eventually, we got her all cleaned up. She was definitely ready to go home and so were Popop and I.
We have not received the results of the sleep study yet, but the technician said it went well and that they got a lot of good information. Thanks for praying for us while we were up there. We love you all.
Monday, May 23, 2011
Sleepy Time
Tonight Faith and Mic will be going to CMH South for Faith's second sleep study. Pray that all goes well and that Faith sleeps all night, as she does at home. The study starts at 7:30pm goes to 7:30am. Mic will be sleeping in the same room with her. We have posted pictures on a previous post from her previous study. I will be sending the camera with Mic and will post new pictures later this week. Pray also for the car ride, as Mic is going alone. Lord, Please be with Faith and keep her happy and content with NO blue spells while in the car. Amen.
Friday, May 20, 2011
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