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~

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.

Today we all WORE RED FOR CONNER (6-30-10).. Today was a hard day even though I had never met Conner or his family I feel like they are a part of my family and in a way they are they are my CF family along with many others. I am so grateful that Sarah and Brad have shared Conner with many of us. For a little boy he has taught us all many lessons or for me he has. The third picture makes me a proud mommy but also a sad mommy at the same time. Courtney had wrote on her balloon to Conner all by her self with out any help and it says I love you Conner or Conner I love you love Courtney.. She has a BIG HEART and is VERY CARING for others. It amazes me how many people wore RED FOR CONNER .. I am not in any of these pictures but I was wearing RED.. The pics of the balloons are all that great but we left them go and I tried getting the best pictures I could but they hurried up into heaven for Conner.

Love,
The Catron Family

clinic

Wow it's been a long day.... Courtney had her CF clinic today plus the whole nine yards that go with it. Anyone that knows Courtney knows that she fights with everything blood draws throat cultures...

...................BIG NEWS............

She has being telling me that she was going to be a BIG girls at the doctors. When they came in to do blood draws she said she was going to sit there and I was thinking yea right well she sat there and I didn't hear any screaming or crying so I thought the didn't start yet until Eric looked at me and told me the needle was in. YES I am a proud mama she sat there and didn't flinch nor say a word about blood draws so she got $1.00 for that yes I told her the other day if she didn't throw a fit I would give it to her. Well then came throat culture she threw a fit but that's OK wasn't as bad as other times. We will keep working on that one. I will take 1 of 2....

Well, Courtney has grown a little bit but has lost almost a pound. Her height is 112 cm and weight is 41 lbs. She sounds clear just has some drainage so if she doesn't sound better by Friday I am to call them and then most likely they will call in a antibiotic. Had two x-rays done one for the chest the other for her tummy as she goes poops 2-3 times a day she is real gassy and can run you out of a room. So her Miralax is 1 capful daily. We also have to work on her sleeping issues this shall be fun.


She also has two loose teeth well on the way home she finally pulled it.