Thank Goodness it's Friday

Thank goodness it's Friday.... Don't get me wrong I love the weekend but more than anything I am happy it's Friday because that means it's almost time for clinic. I don't usually get so happy about going to them but my last post stated that Courtney was getting the sniffles well guess what it has turned into a cough with a runny nose. Again I would love to say it's allergies and I am hoping that I am right. We have a busy week ahead of us. I leave next Sunday morning to go to Arizona with my mom and dad for my nephews graduation. The girls will be home with Eric and I know he is able to care for them but I am the mommy that doesn't like to leave her children and am the kind of mommy that has to be in CONTROL all the time. I have faith that almost everything will get done and I know that it's not always going to be done my way but as long as things get done I should be happy right?

We took this year off from Great Strides I know that's bad of me but it didn't help that we don't have many walkers in our town and that our walk got cancelled because of all this. I feel bad but I have this feeling with taking time off will give me more ENERGY to focus on next years walk.

Mandie ~

Just another day

Well well well, Courtney seems to have the sniffles yet again I am thinking some of it's allergies since she isn't coughing let's keep those fingers crossed. Courtney has her birthday check up , really why do they call it that? I call it her yearly CF appointment next Wednesday so lets hope all is well then. I have tons of questions this time around I want to know what her vest settings should be set at these days since she doesn't cough at all during her treatments unless she is sick. I mean her base line is no cough but then again that changes too.


Tonight as she was getting ready to do treatment I was getting everything ready and I was going over what she had to do and when like I always do even though she knows what order they go in. Out of the blue for the FIRST time EVER she looked at me and said " mommy those are a lot of medicines I have to do". It BROKE my heart.. She can tell you how many pills she needs and what medicines she takes and you would think she would have said something before. This is all NORMAL to her and yes US but it's NOT FAIR!!!!!!


I have done a lot of worrying lately about next year when she is in school all day. I know she knows the do's and don'ts but they are closing so many elementary schools closing so there will be more at her school and my biggest fear is someone else having CF and the parents not telling the school and or for some reason them getting in the same class. I honestly don't know how many school ages kids in our area have CF. I think I am going to go talk to the nurse this week or when I have to sign the girls up for school and see. I know she can't give names but I am hoping she can tell me if there is anyone else in that school with CF.

Sorry for going on and on. That's all I really have to say

How we got to know Cystic Fibrosis

Here is a quick back ground on how I became a mommy to a princess with Cystic Fibrosis. Through my whole pregnancy with Courtney every thing was fine. I had a c-section with her by choice, I had a c-section with my oldest so I figured I would with Courtney also so my parents could be there. When she was born she weighed 7lbs every thing seemed right. She slept almost through the night she would eat but then would be hungry again soon after had nasty smelling diapers, she was never really sick. At all her check ups things seemed to be fine.

6 month check up her pediatrician didn’t like where she was for weight or height thats when she told us that she had been watching it. So the fun began of tons of pokes for blood draws for this test and that test. When all those test came back fine she sent us to John Hopkins they did a test that came back negative and then they did the sweat test. I remember that phone call they told us to come in they wanted to talk to us. We were told that is was positive and that she has Cystic fibrosis she was 9 months old when she found out. From August thru November she was admitted to the local hospital for breathing problems I believe it was also November she had pneumonia and boy did I feel like the worst parent ever she has been acting fine. The whole time we were going to John Hopkins she was admitted once because she had cultured Pseudomonas aeruginosa she came home on IV’s and boy was I scared. As I look back on that first time I have to laugh because I am no longer afraid to do her IV’s. I liked her doctors at John Hopkins don’t get me wrong but she has such a better doctor now.

In 2006 we moved to Huntington Indiana since that is where my parents were and so I could get the help when I needed it. It meant a whole new clinic we could have gone to Riley’s Children’s hospital or Lutherans Children’s Hospital well we went with Lutheran because it was smaller but also closer. I soon find out that Courtney would only have only one pulmonologist and I liked that idea because then we were on the same page and Courtney didn’t have to learn to trust to many doctors. It didn’t take me long to fall in love with her CF team. I don’t know what I would do with out them. Her doctor soon changed and played around with her medication. Yes she is on a lot of medications it seems like but if it keeps her healthy and gaining weight so be it.

I think with her only have one doctor she has learned to trust her and also they have a bond. Courtney may only be 6.5 years old but in the last year I have made her answer most of the questions that the nurses and doctor ask her. Some may think that is wrong of me but I am not always going to be at her side when she goes. I also think it gives her some feeling of control. We have been hospital free for a little over a year and that is great but at times I find my self waiting for the other shoe to drop. I let Courtney be a normal child, she goes to a public school she plays outside she gets dirty, she does dance she swims at home or at her grandma and popops house in the summer this fall she may be doing soccer the ONLY THING I DON’T LET HER DO IS DRINK OUT OF WATER FOUNTAINS!!!! She is my princess and my lil trooper . Sorry that I have jumped around a lot in this post but trying to go back 6.5 years is hard to do sometimes.