She Ain't Heavy, She's My Daughter

Lucy's visit to clinic on Monday, at which I accidentally showed up a week early because I failed to double-check my date book , was a fairly good one. Lucy was on her sweetest and best behavior for our two and a half hour appointment. It is my job to bring and provide nearly three hours of toddler entertainment while four different women, a nurse practitioner, a pediatric registered dietician, a clinical social worker and a respiratory therapist come in the room to assess Lucy and discuss with me her health issues of the last 3 months.

Here's an update:


~Lucy is 22 months old and weighed in at 24.7 pounds (38 percentile) and a height of 34 inches (71 percentile). The combined height and weight for BMI (body mass index) is only 17 percent. NOT good! She is tall and skinny and could use a pound or two. With all the holiday season food and goodies and a few medication changes I am certain we can get a few more pounds on her.

~Because Lucy is not gaining weight as well as she should considering the amount of calories I give her on a daily basis we have all decided that changing her pancreatic enzyme from Creon 5 to Pancreacarb 4 would be appropriate. I am hoping this change in enzymes will help her absorb fats (a recommended 1600 calories a day) a little better and rid of some of the GI issues she has including bloating, gas, abdominal pain and bulky, greasy poop sometimes up to 6 times a day and 3 occurrences of rectal prolapse.

~Her blood work came back finally and they showed that her vitamin levels (A, D, E and K) are all normal which means that she is not malnourished. She is absorbing nutrients well enough but not breaking down fats. Fats are moving through her body to quickly. We will be starting her on a twice daily supplement of probiotic to maintain a healthy bacteria balance in her intestines. These are similar cultures that are in yogurt but in higher quantities.

~Throat/sputum culture came back with nothing on it! Yippee! Clean as a whistle!

~I took her new vest to our clinic visit so the respiratory therapist could re-program the settings to better loosen the mucus in her lungs. We now have it set for a running time of 20 minutes in five minute increments. The first 5 minutes is at 8hz. The second and third is at 9hz and the last 5 minutes is at 10hz. We have had many issues the past few days with this new program! Lucy screams at the top of her lungs tantrum-style, fights and struggles with me to turn off the machine. She says it hurts her and I think it does. Her chest is rubbed red-raw after each session. In the beginning we were doing the entire 20-30 minute session at 8hz and never had a problem sitting still. I'm wondering how much more mucus she is actually "getting up" by having it on a higher shake setting. Is the pain and struggle really worth it? Should we go back to the original 8hz? Only time will tell.

~I was also told that there is not a "necessary" need for her to get the H1N1 vaccine which I was against giving to her anyway. Lucy's last week of her 1-day preschool is next week. She does not rub elbows with the public on a daily basis and the chances of her getting the "pig flu" is slim. Her O2 saturation has never been below 98 and her lungs are very healthy. Both the clinic and I have decided it is okay that she not get the vaccine.


Lucy has so much fun at her clinic visit. The ladies there are great and really make her feel at home. We have known these people for almost 2 years now and they have watched Lucy grow up and thrive. We really do have the best clinic a CF mommy and CF kid could ask for!

Here's Lucy coloring at her visit in between each individual assessment...

Lucy gets to wear her nurse practitioner's beautiful purple scarf while she has a snack of a chocolate sandwich...