Wednesday, July 25, 2012

Clinic 7/25/12


Today we went to E's 2nd Clinic visit.  At each visit we meet with her CF Team which is made up of two different nurses, a dietician, Dr. R (the Pediatric Pulmonologist), and a few others who are there to teach us about airway clearance and to go over the research study we are participating in.
Needless to say, these are long visits!  But it's great that we have so many people working together to make sure she stays healthy.

For the past week and a half, we have noticed some signs of malabsorption.  E has gone from having one dirty diaper a day to having 7 or 8 of them.  We answered several questions to see if we could figure out the root of the problem:
Were the enzymes expired?  No.
Had they been left in the heat?  No.
Are we using generic enzymes?  No.

Since it wasn't any of those, they decided to put her on an antacid to see if that helps.  Apparently the pancreas not only produces enzymes to help digest food, but it also produces bicarbonate which is a base that helps neutralize acid that travels from the stomach to the small intestine.  If her body is not producing enough bicarbonate, the stomach acid can break up the enzymes before they get to where they need to go.  So now she is taking Axid twice a day to see if that's what the problem is.

Even with all of that going on, she is still gaining weight.  She weighed 11 lbs today!  The dietician said she wants E to be gaining 23 grams/day and right now she's gaining an average of 15 grams/day so if we increase her calorie intake a little more she should be right where she is supposed to be.

The major thing we learned about today was chest physiotherapy, or CPT.  CPT is a method used to loosen the thick, sticky mucus in her lungs so it will be easier to cough out.  We learned how to use this little rubber mallet to do "percussion" on her chest, back and sides.  Basically we use our baby as a little drum for about 30 minutes twice a day!

So far she doesn't mind it but I'm sure we'll have our work cut out for us when she starts moving around more!

Friday, July 20, 2012

2 Months Old

Usually I talk about how time flies and about how my babies are growing up too fast!  And you would think I'd say that I can't believe she's already 2 months old...but that's not the case.  I feel like she's been here forever!  How is she ONLY 2 months old?  I guess it's because so much has happened in the last two months.  So many doctors visits and weight checks and medicine changes and hours of reading each night through the giant pile of CF information I was given. 
It's a good thing she's such an easy baby!  I never would have had time to read with the other two girls at this age!  It feels so strange having a baby that doesn't cry all the time.  I actually get to ENJOY having a newborn right now!  That's something I never thought would happen.  She's been sleeping 8 hours a night for weeks.  She only cries when she's hungry.  She smiles and "talks" to us all the time.  She's the happiest little baby I've ever known.

At her 2 month appointment with the pediatrician, she weighed 10 lbs 12 oz and was 22 1/2 in long. 

Monday, July 16, 2012

Color Me Rad

Several weeks ago, my sister told me about a 5k that some of her friends were planning on running called Color Me Rad.  Everyone wears white and then while you're running you get sprayed with color so you come out at the end looking like a bag of skittles!  She said they found out that the race helps raise money for the Cystic Fibrosis Foundation so we all decided to do it too!  I barely even mentioned it to anyone (I've been a little busy lately) but the word spread and we ended up having several other people sign up to run with us!  I can't even explain how much it means to me that all of these people came out to support a cause that means so much to us.  We have the best friends and family!