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

Thursday, May 19, 2011

Clinic

Tuesday, we had an ENT and Kidney appointment. at CMH. I will give a brief summary of what happened. We are excited to tell the ENT Doc that we could hear noise coming out of Faith's mouth, some crying, and some humming sounds. On the other hand we were nervous that the ENT doc was going to scope Faith and she would get mad turn blue pass out and the doc would want to admit her. They called Faith's name while we were in the waiting room, all five of us went back to see the doc, Nurse Linda, Mic, Elizabeth, Faith and myself (Mason had preschool then went and to hang with aunt holly and cuz eliajh). Everything was going perfect no news really just telling ENT doc what's been going on. The doc looked at the trach said it was looking good. Then she wanted to scope Faith. To "scope" means they take this little camera and in your nose and down your throat then they can see your vocal cords. The doc placed the scope in and Faith was MAD the scope didn't even make it past the inside of the nose. You must take a breath for the "doors" to open in your throat so the camera can go down and Faith was not breathing. Faith went on to blue and the did pass out but came back on her own. The doc didn't even say anything about readmitting her!!! PTL!!! So the scope was worthless with no results. But I am glad they tried anyway.

The Kidney appointment was more for monitoring her high blood pressure. They still don't know why Faith even has high blood pressure. She will always be a mystery. :) She has been on two different blood pressure meds, they decided to try taking one away and keeping her on the other. Pray with one med her blood pressure stay at a normal reading.

Monday, May 16, 2011

Get The Tissues Out

This song really hit home so I had to post it.





Thanks for your prayers.

Saturday, May 7, 2011

Home Again

There has been alot going on in the Pfeifer home the past two weeks. First of all Faith has been home a record, YEAH!!!! We are SOOOOO excited she has decided to stay home this time. The other day I was sitting out in the living room with my son Mason, age 4 and he looked over at Faith in her swing and said, "Mama I am so happy Faith is still home." That means more to me then anything, to hear the words of my 4 year old's heart, pure love for his new sister!

We have a home health nurse, Linda. She has been wonderful! She is just what I need to be able to live somewhat of my new normal lifestyle. She has been sent from heaven for me or should I say for Faith. With Linda here I am able to leave and run my errands and spend time with the other kids and not have to stay home all the time. I would be staying home most the time if she weren't here. She has fit in just wonderful.

We went into CMH this last visit for Faith's blue spells. Well she is still having them, but she is recovering on her own!! PTL!! We have not had to "bag" her in a little over a week! Praise straight to the Lord! It is soo scary to see your child turn blue then go on to turn gray. But when she takes that first breath after a blue spell it is a wonderful sight to see her skin pink!!

She still has high blood pressure, well she doesn't with the drugs they have her on. Below is a picture of the drugs she has every morning at 9am with her breakfast-formula. I don't mind giving so many to her, because they really do help her! Those doctors know what they are doing, most the time. ;)






We had our first Special Care Clinic appointment. We were there for about four hours and saw the following...OT, PT, Dr.Hornig-neurosurgery, Dr.Murphy-urologist, Rehab Dr, Orthopedics Dr, Peds Dr, social worker, nutritionist, and I am sure I am forgetting someone. It is a wonderful program they have at CMH (that's were clinic is) where all the doctors come to us and we stay in one room. We will have separate appointments for ENT, general surgery and the pulmonologist, they do not attend the Special Care Clinic.

I will only speak for myself....The past 8 months have been the hardest months of my life. I have been though some hard times but nothing like this. Just think of your child being sick with the flu and there is nothing you can do. That is what it has felt like, helpless. We found out Faith was going to have special needs at 20 weeks in the womb. I want to make it VERY CLEAR I have never been mad or upset with God. Faith is a true blessing! But I have asked him many times Why?



I know there is a reason why she is here. I can tell you she has touched more lives in the past four months then I have in my life time. I hear stories from people who read this blog about how Faith has been a true inspiration to them personally or to there family. I have been out and about (four different times) and someone will hear me talking to my kids about "Baby Faith" and they will stop me and and say "Are you baby Faith's mother?" and I say proudly "Yes I am". Remember I have no idea who these people are and they go on to tell me they pray daily for Faith and our family. The Lord is so faithful and he does provide in times of need. She is one chunky, big bright eyed, beautiful, little girl making a very BIG impact! When I am rocking her I just stare at her and think the Lord has so much in store for you.



The Lord made us just the way he wants us to be.