Wednesday, February 3, 2010

Clinic update - February

Olivia had Clinic today.
  • Her O2 saturation was 100% again.
  • She weighs 25 pounds (which is what she weighed in November)and is 33.7 inches tall (which is 1.7 inches taller than in November). This puts her BMI back at a lowly 18%.
  • We are to get into more of a routine with meals and not allow "grazing". Olivia drinks a ton of juice everyday and we are to cut back on that so maybe she will be hungry more.
  • I always make sure that I'm completely honest with her Care Team about her treatment that way they know exactly how she's doing. So I had to come clean on her Prevacid, Vitamin and Zithromax. She rarely takes her Prevacid anymore-I'm not making excuses for myself, but they took her off of it for a while so it fell out of my routine and she doesn't seem any different when she's on it. It will help with her enzyme/food absorption which mean if the doctors want her on it,I need to give it to her everyday. The vitamin had changed from the liquid, Vitamax, to the chewable SoureCF and she hates both. We are going to try AquaDEKs and get it strawberry flavored at Walgreens. I've got her on just a regular gummy multivitamin in the meantime. The Zithromax has been the most recent addition and for some reason has been hard for me to remember every Monday, Wednesday and Friday. I am going to try a small dose every day and get it worked into my routine that way. The doctor says it hasn't been tested so he can't prescribe it that way, but he doesn't see a problem with trying it out. It made me cry when I admitted all of this to the doctor because I felt like a failure, but she pointed out how good Olivia is doing overall and that they only prescribe this stuff and that she couldn't do it all everyday. She said you have to priortize and "life" comes first.
  • The doctor listened to her lungs and said they sound really good again, so that was our good news at this Clinic.
So it didn't go as well as I had hoped, but it definitely could have gone worse! We have to go back in a month (next appointment is on her birthday). As Ronnie always tries to tell us, we are in control of CF and will get back on track!


CFMama said...

You are right, it is best to be honest.

Nathan also drinks a ton of apple juice. It is one of the only words he knows and he asks for it all the time. I need to cut back that and get him eating some higher calorie "non grazing" meals too!! I am right there with you mama!

Julie said...

Courtney, you're doing a wonderful job. Don't beat yourself about forgetting a few times. It happens to all of us. Olivia is happy and has been doing great. She'll gain the weight.

jansi said...

You know what Olivia has good going for her?????? You....!

I know weight is very important, but 100% O2 sats and lungs that sound good is AWESOME! I think you rock and are doing a fantastic job with Emi's BFF. :)