CF CLINIC

Courtney had her 2 month CF clinic visit today at 10:30 a.m. so today is a long day for us. I got the girls up about 7:15 - 7:30 so they could eat breakfast since we had to be on the road by 9:00 a.m. and I had to stop by and get grandma (my mom) since she was going with us and we have a 1.5 hour drive just one way. Well for anyone that knows Courtney she isn't really a morning person at all, she is getting better but she is a slow poke so before we left I had her to her Albuterol puffer some treatment is better than none right? Well we get to clinic like at 10:15 so we took all the stuff that DeziRae's girl scout troop 3034 had gotten for the peds floor and we went and took it to them. Then off to check into clinic the waiting room was packed so we sign in and go wait in the hall and finally get to go back into the waiting room for her to be called. 

She weighs 41.6 lbs she she only gained six tenths of a pound :( she is 113.2 cm tall.

Off to do PFTS

 

David had told us it was one of the best ones Courtney has ever done so I am a proud mama... She is gonna need a size medium vest here shortly. Here comes one of our favorite nurses to do vitals her temp was 99.5 her O2 was 97 I will take it even though it's usually 100 not going to complain.

Then comes in Courtney's doctor and it kinda went down hill from there, she isn't happy about Courtney's weight and that she isn't eating lunch every day. OK I do UNDERSTAND that she needs to GAIN WEIGHT but when I ask Courtney like 3 or 4 times if she is hungry for lunch and I get the same answer I am not going to force her to eat. I know when she is hungry she will tell me and she will eat dinner is a hit n miss some nights she eats great others not so great yes I know that heat plays a big part right now but we have A/C and keep it in the 70's. So the Dr. added Periactin 2mgs at every meal again, lets hope this works I was told to do one month one and one month off. Then the DR. went on to say that her PFTS numbers are down from last time and then asked me if she had done treatment and I had told her she did her Albuterol puffer but not the vest. What does she want me to do get my child up way earlier than I need too??? When the nutritionist came in she told me that if Courtney's doesn't gain some more weight by September we will have to come up with another plan. Her BMI used to be in the 50% tile and now it's in the 25% tile. I had asked her if I should have Courtney eat a snack at school during the day she told me yes. So needless to say I will do what I can to get her to eat and gain more weight but I can't push and make her or she may just not eat anything or very little.

 

Having one of those days

Here are most of Courtney's meds she is no longer on Creon but Zen Pep and I am missing the Advair in this picture. As Eric and I were filling her pill holders I figured out on a month of 31 days my sweet baby take 558 or more depending on how many snacks she has. I am just having one of those type of days where I just want to scream and cry but I won't because I know there are others out there that go  through or have gone through more that I have with my baby... 
I would love to be able to go out to eat and not have to remember to take her pills, I would love for her too have 2 extra hours a day to play, But OH NO we can't do I hate it YES but I will make sure to do everything I can to keep her as healthy as I can. This is NORMAL for US and this is NORMAL for Courtney. She starts school a month from tomorrow. Am I scared? Hell yes I am scared for the fact that she will be there all day.  It was different when she was only going half days. Last winter was OK we managed to AVOID club med..  I am just having one of those love hate relationships today with CF!!!!!

Sorry for just rambling and not making any since at all.

Just a little bit of everyrthing update

Good morning everyone... Last night a CF friend on face booked informed many of us that there was a person faking that her daughter had CF and had even stole some pictures from this friend. How could some one do that.. Come on I don't wish CF up on any one. It just really upsets me and come on especially after the Jones Family loosing their son Conner. This person needs help and if she really does have a daughter I feel so sorry for daughter.

On another note Courtney has been having a good summer she will now go in her grandma and poppop's pool and ours with out her water wings, she now jumps of the ladder in to the water. Courtney just seems to keep amazing me on things. There are days that she fights me with treatment and I can't blame here who would want to come in side for a hour to do treatment so we have been trying to get it done before she can go outside and play and then she does her last one when it's time to come in for the night. The warm weather has kinda messed with her eating she seems not to be too hungry so we just keep fruit in the fridge for her to eat..

DeziRae is no longer in a booster seat so Courtney thinks she doesn't have to be in one .. Both girls will start soccer at the end of July. I am real curious to see how she does with that. I would like her to have a sport to play since it's good for her I just have a feeling come middle school she will want to be a cheer leader nothing wrong with that... Both girls have decided to add hip hop dance in with there tap and ballet so lets see how we all are going to handle Saturday soccer games and hip hop.

Courtney used to be on Nexium until the wonderful insurance company wanted to be a butt and make her have to try Omeprazole generic for Prilosec and honestly I think she has had more tummy problems with that med so I will talk to her dr and see.


Love,
The Catron Family