UHHHH

I think Courtney has some kind of bug on Friday so I kept her home due to some tummy issues. She seemed OK for the most part just in the bathroom a lot. Saturday morning she woke me up around 5:45 A.M. cause she has a accident so she gets in the shower why I strip her bed. She takes her temperature and its 100.4 that's high for Courtney her normal is around 97.8 so she rested on the couch this weekend the weird thing is that she has had a headache all weekend. On a side this weekend has been hard on me not just because my baby girl was sick we lost 2 cfers one on Saturday and one today. They both were in there 20's. I didn't personally know them but still it hurts and it hits home. I am having a really hard time with this disease . It just shows us that is will rob us of our loved ones that are dealing with CF when ever it wants to. I just ask that we keep both these families in our prayers. Just give your kiddo's and other loved ones a extra hug and kiss. I know I sure did tonight.

November 2nd-6th thankful

Courtney has been asking me when we were going to update the blog on the things we are thankful for so I am taking it as this is something she really wants to do and now this mommy feels bad because I haven't made the time. So here is are list.

Courtney November 2nd-6th

I am thankful for books as I love to read

I am thankful for school because I enjoy and love to learn.

I am thankful for being able to sing

I am thankful for being able to eat dinner with my Grandma, Poppop, sister and Mommy on Saturday night.

I am thankful that my Poppop went church with us today.

DeziRae November 2nd-6th

I am thankful for my best friends and friends
I am thankful for my family as they are always there for me
I am thankful for our dogs
I am thankful for our world
I am thankful for my Grandma and Poppop because I love them and got to spend time with them this evening

Eric November 2nd-6th
I am thankful for Gods Grace
I am thankful for My family
I am thankful for the blood shed for my sins
I am thankful for - well since he is at work at a meeting I am not able to complete the last two days for Eric.
I am thankful for -


Mandie November 2nd-6th

I am thankful for all my CF family because I am able to vent and or talk to them and they know what I am going through.

I am thankful for my wonderful hubby I am not always the easiest person to live with and not always the nicest person at times and he is always there at the end of the day and loves me no matter what.


I am thankful for God and the relationship that I have with him.

I am thankful for my family even though we don't all get along I still love them no matter what.


I am thankful that it's the girls bedtime and they are in bed as it has been a long day with time falling back a hour it seemed to take for ever for bedtime to get here.


What are you thankful for?


Love,
The Catron family

My little witch and Soccer Coach

I got this idea from a friend on Face Book Since its november I am going to have the family post something that they are thankful for.

 Courtney-

 I am thankful for doing better today on my throat culture.

DeziRae- I am thankful for Jesus

Eric-I am thankful for Salvation

Mandie-

Having such great parents that are always there for me and can bring me back up when I am down

November 1st Clinic

What a day it has been, Courtney’s clinic appointment went OK could have been worse but could have been better.

She gained weight she is now 50lbs I NEVER though she would get there she grew a half a inch so there for her bmi went down. If she gains 2lbs by January she will get 1 $10.00 gift card to Walmart if she can gains 5lbs by January she gets 2 $10.00 gift cards to Walmart . Throat culture was OK today it took 4 people to hold her down, one day she will just let them do it with out a fight or even better she will be able to spit stuff up. We are going from Zenpep 10’s to 15’s to see if that helps with her gas. Her PFTs were down a little bit and I think that is because we didn’t do treatment this morning but there was no way I was going to get her up at 5 this morning when I knew she was going to be going to school after her visit, but one of her other numbers were up .

We are going from Albuterol to Xopenex going from Nasonex to Nasacort to see if that helps since they other one seems to give her bloody noses when she does it. We are going to let her stay up later to see if she falls asleep faster since I can put her to bed at 8:00 and she won’t go to sleep until 9ish or later.

I had also asked the Dr. about two meds that could be used with the arrow neb and needless to say I about got my head bit of and pretty much got made to feel like a crappy parent. She basically told me to not get them and that CT scans don’t really help with a CF patients sinus and that she basically only likes one ENT due to them doing 3d images. OK I understand that but do you want to make the 3 hour round trip and pay for my gas for Courtney to go see this ENT ? The ENT Courtney see’s now also has other CF patients so right now I am in a tight spot. I don’t want my daughter to have to have another sinus surgery but if she needs it then yes but the Dr . is basically telling me that when she needs it she will let me know. She is a control freak at times. I just want what’s best for my daughter

It's that time of year again

Her outfit that she picked out for picture day.

Trying to scare me I love this pic

Being cheesy after treatment tonight

Sisters and best friends for life

not real sure

My baby girl

Courtney and Grandma on 9-14-11

Courtney interviewing everyone

Just Courtney

Yeap I am really starting to dislike September through late March. Courtney had to go in last month for another CT scan of her sinus's. CT scan didn't look as bad as her first one back in December but it wasn't all that great either. So her ENT doctor put her on 6 weeks of Omnicef and three weeks of prednisone 1st week she 20 mgs 2nd week she takes 10 mgs and the 3rd week she is on 5 mgs. So this shall be fun since this is the first time EVER that she has been on them longer than 3 days. She also goes for a CF check up next month so we will see what her CF doctor has to say about her being on the meds she probably won't be happy because she wasn't the one to put Courtney on them, she doesn't like that we see a local ENT rather then the one in Fort Wayne that she rather Courtney go and see. I like our local ENT she deals with other CF patients also so she knows her stuff and heck it is less than a 5 minute drive for us and Courtney doesn't have to miss school. So all in all I am hoping that she gains some weight so maybe just maybe the doctor won't complain to much. I am really thinking about taking her to Riley but I don't know, I want her to get the best care possible and at times I feel like she isn't. Yes I understand that she also has asthma so OK lets do something about it. Also her CF doctors knows that  diabetes runs on Eric's side of the family and you would think since once a year her levels are kinda high for her that they would at least draw twice a year and then she has us add a iron pill along with her vitiams and I thought it was because her iron was low nope it has to do with her blood count. I had to ask why and then I was a little upset because my mom is dealing with the same thing right now so you would think they would talk to me more about it or even want to re draw and see where her numbers are now.

Well, good thing Courtney is on a antibiotic because Eric is sick and I thing I am starting to get it. She is coughing more so we have upped her albuterol treatment and vest she goes to bed at night and that's when she really starts coughing. I just wish she would learn to cough it all up but I know in time she will. I know part of it is probably due to allergies but she doesn't really get effected by them. 

On a good note she is loving school and is in the highest group for her spelling words I was told she tested higher than the other two that are in her spelling group. She got a 100% on her math test. I am so proud of her but she has her standards set so high for her self.

Summer and Vacation.

Wow it's been forever since I have posted. With Summer here I don't really have time to get on here. Lets see Courtney has been doing well, she has clinic August 2nd and then I am taking her to get a second opinion and that will be September 13th. I am hoping this doctor will be able to figure things out and maybe just maybe be able to answer some of my questions that I have not been able to get answered. For 1 there is like a big pimple by her eye and no it's not a pimple and her pulmo now says it's a virus and when the virus is gone it too will go away. Well hello she has had it for a long time, yes sometimes it gets smaller but never goes away. 2. Courtney's tummy there are days that she looks really bloated and have very stinky gas doctor isn't worried about this but I did take my oldest to a GI doctor and we are looking for answers so I am maybe hoping to get Courtney in to see the same GI if her current dr isn't going to do a damn thing about it this mama will. We are slowly changing our pasta over to wheat pasta.

Right now we are in Maryland on vacation to see Eric's mom and sister and family. It's been nice and warm and honestly a little to warm they don't have a pool to swim in so it makes it harder. The girls start school August 11th. I think Courtney is ready . I know this mama is kinda ready for them to go back to school. They will find out there teachers at the end of July.

Mandie

We are in club med

It’s been awhile since I have done a update. Life has been crazy and for the most part it’s a good crazy.

As I am sitting here typing this update I hear Courtney’s vest and a movie that she is watching on her laptop but I also hear this beeping sound. Yeap IV’s are done.

She is in the hospital she got admitted today. Last time she was her was when she was in Head Start so we went 2 years with out a tune up.  Let’s back up a little. She has been on antibiotics for almost 2.5 months with maybe a week or two break before she was on another one.

Last night Eric was listening to her something we have became so used to in those 2.5 months and he said wow it’s sounds like her stomach is in her lungs. Courtney had a CF check up today and from what I have heard is that the doctor said that she didn’t sound good but didn’t sound real awful thank goodness but then again we had done her vest and nebs before Eric and her left this morning… Doctor also said that she should be clear by now with all the antibiotics she has been on. So I am glad to know that I wasn’t going crazy..

I know we will be in here for a least a week and then probably home with IV’s. Courtney gets her PICC line tomorrow and that she is on IV Tobi and Ticarcillin/Clavulanate Potassium- Injection common brand name is Timetin.  That’s all for now.

What a clinic appt

Wow what a long day it has been. Clinic didn’t go so well but then again we got to come home. Courtney didn’t gain any weight she is still holding at 45.8 pounds and is still 117.5 cm tall. Her pft’s are down 8% from last time. She hasn’t even been off of antibiotics for a week and she is on them again. She is on Clarithromycin generic for Biaxin has anyone been on this before? It’s new for her and we even got it flavored and all I am going to say it’s going to be a long 3 weeks she didn’t even take it all tonight she spit it out. She is also on 7 days of Prednisolone generic for Orapred and I even got that one flavored.

Dr. James is thinking it’s more asthmatic than CF. We go back in 3 weeks and if not better then we will be admitted. Hubby feels like she needs be admitted for a tune up since it’s been 2.5 years and well I am stuck in the middle.

Mandie~

Clinic update and VENT

Well, I think I should have just taking Courtney to clinic today because of what happened. Let’s see Courtney gained only 8 ounces and kinda got yelled at for her not gaining more but I am sorry that my daughter rather eat fruit and not junk all the time. I am not one of those parent’s that are going to feed their kids fast food every day just to gain weight. There is also crackling in her lungs so she is on 3 weeks of Augmentin. Eric basically got yelled at from the doctors because she said she wanted her to be on anti’s. Ok let me back up on Friday February 4^th I had called clinic because we thought we heard wheezing well no one answered so I left a message and called her peds to see if I could get her in at least to be listened to, the clinic nurse called me back and I explained what was going on to see called the doctor and needless to say the doctor told me to take her to the peds and if she was wheezing or anything to put her on 3 weeks of Augmentin I also informed the clinic nurse that she was having sinus surgery on the 14^th of this month. So I take Courtney to the peds and she is clear as a bug so I called the clinic nurse back and told her and she was like OK that’s good.

Well today the doctor told Eric that she should have been put on 3 weeks of Augmentin and that she acted surprised that she had already has her sinus surgery and that after sinus surgery it all drains into the lungs and then says well I only trust 1 out of 14 ENT’S. Well, hello when she said that Courtney needed to be seen by an ENT she should have recommend one like the one that she trust. I feel bad for Eric getting the wrath of it. There needs to be better communication between us the CF clinic nurses and the doctor. What get’s me is that I even called and let them know she was clear the nurse should have said something to the doctor about Courtney’s up coming surgery. So now we have to go back in one month for a follow up.

Don’t get me wrong I love our doctor and how she likes to keep on top of Courtney’s health but don’t yell at us parents when there was missed communication.  So there is my vent for the day.

Mandie~

quick update

What a week it has been... Courtney went and had a CT scan last week and I have the films to take to the ENT on Wednesday lets just say it's hard having them and not knowing how to read them. All the CT tech said is she is stuffed up, DUH I could have told you that. I don't know if it was a good or bad thing that she was stuffed up when she had it done. I know that she hasn't had a bloody nose since she started using the cream that the ENT gave us. She has done really well this winter so far with out being really sick or needing anti's . Dezi and Courtney stayed at my mom and dad's house Friday night it was nice, even though I was in my pj's by 8:00 P.M. kinda makes me feel old but I enjoyed being able to just relax and I even slept in Saturday morning I made my self. The girls came home Saturday late afternoon and Dezi told me she didn't feel well she didn't want to eat but I made her eat a little bit of soup well needless to say on her way to bed she threw up all over the floor and then a few more time during the night. So Dezi and I didn't go to church Courtney got up early so she could go with her daddy to church I didn't want her around Dezi more than she needed to be which was a good thing because Dezi puked lots more. She really hasn't eaten much today but she has been having liquids and she ate a piece of toast and has been able to hold things down since noon. I will keep her home tomorrow just in case. If no more puke tomorrow then she will be returning to school on Tuesday. 

On a side note I am so over winter and the cold weather I try not to complain because I know it's colder other places. But I am ready for carpi's and flip flops. I'm ready for a weekend get away with just hubby and I. I am wanting to do a surprise vacation with the girls even if it's just a weekend get away with them, not sure how many vacations we are going to be able to take this spring and summer since we are going back home to Maryland in November for Eric's nieces wedding and I would rather fly then do the 12 hour drive since it will be a short trip. 

Hope everyone has a good week will update Wednesday or Thursday about Courtney's ENT appointment.

Mandie