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

Merry Christmas

Love The Catron Family

 

 

 

 

 

 

 

 

 

 

Clinic 12-7-10 update

Courtney's clinic went pretty well pfts were the best she has ever done. I am still trying to learn what all the numbers mean. She is FINALLY at the 25%tile for her weight yes this is huge for her as her Dr. said. She weight 45 lbs she didn't gain a whole pound since last time. Throat culture was still a fight but it only took 2 times so she got her Starbucks one day I know she will do it with out a fight. Doctor seems to think it was her asthma that has been causing all the trouble in the winter. We go back February 1st 2011. 

Christmas break starts a week from today. I know she will be happy because she won't have to get up at 6:00 A.M. gotta love her for doing it Monday-Friday with out a fight. She has a eye Dr appointment on the 20th, and the ENT on the 22nd she is going for her nose and also to have her hearing checked. I was just sitting here and I had this thought I wonder if her headaches are from her sinuses? No runny nose so I am wondering if they are packed? Any info on this would be great. That's all for now. Have a great weekend and keep warm. 

Mandie~

Health and Christmas

As I sit here reading some of the blogs that I follow my heart just breaks, why do these kiddo's have to go through what they do? It's not fair.... As I was reading them I thought to my self that I guess we are lucky Courtney hasn't been that sick and has only been on oral antibiotics and hasn't had to be in club med for 2 years don't get me wrong I am not bragging about it because honestly I don't know how we have done it.. She goes to a public school and has since head start and this is her first year being at school all day. I guess we have taught her well about germs and it does help that she has a great teacher and has in the past, and I will be the first to admit that Courtney doesn't always get her 2 treatments in a day do I feel bad and guilty? Hell yes I do but she is very good about taking her time and she has to be in bed by 8:00 P.M. because Monday - Friday my baby is up at 6:00 A.M. for her morning treatments. I can say when she is starting to come down with something we don't miss a treatment. We have clinic on December 7th so I am hoping it's a good one, she goes to the ENT on the 22nd of December. I also tend to look at how much some of the kiddo's weight that have CF and I get so happy because there are some kiddo's out there that are younger, same age and even a little older than Courtney that weight more than Courtney. We have always struggled with her weight and let me tell you this child can eat when she wants to, she can eat a whole bean burrito no onions easy red sauce add tomatoes and sour cream.

Eric and I are doing something new this year with the girls for Christmas we have decided to set aside a certain amount of money and get the girls the Christmas gifts. It's not because we don't have the money but we both think it's time for them to realize it's not about the gift, it's about family and friends and giving. This year we are going to go help at church by serving Christmas dinner we did this for Thanksgiving and it made me feel so good to help others. 

Happy Thanksgiving

Happy Thanksgiving from our family to yours. Hope you all have a great day.

Well, My baby jut turned 7 yesterday. Where has the time gone? We did her party last weekend so last night was just family. My little girl was OK with taking time out of her special day to go help Thanksgiving Dinner to the ones that needed help. Here are some pictures of her birthday party and her special day. She asked Grandma to make her a banana cream pie for her birthday and she got it :) gotta love my kiddo. Next year her birthday is on Thanksgiving.