Well Clinic!

This weekend was super exhausting for me. Having to work nights until 3 am and then wake up at the crack of dawn everyday for a failed garage sale and a morning clinics. I am pretty caught up on sleep and now have an update for you about clinic yesterday!

Lucy finally got fitted for her new vest!! I am thrilled not only about the fact that I won't have to "thump" on her chest and back any more but because she actually didn't mind wearing it for a few minutes! Here is a link to The Vest website showing what her new vest will look like and how it works. On the video shown on The Vest page, her vest is on the right.
This vest is retailed at $15,000 and I am grateful to say that the Medi-Cal and California Children's Services is paying for the entire cost. In fact, I have not had to pay a dime since I found out I was pregnant with Lucy. Who says government health care doesn't or will not work?

The request for the vest has been put in by her clinic and should be ready for pick-up within 30-60 days! Very exciting!

Lucy's weight gain has been good since the last clinic visit 3 months ago. She weighed in at 24.1 pounds and is 33 inches long. Yes, she still gets measured lying down. Does anyone know at what age they start referring to height instead of length??

Lucy's BMI (height to weight ratio for age) is 29% which they considered to be normal although it wouldn't hurt to add another pound. She is so tall for her age that it makes the ratio seem low. I will continue to give her all the fatty, yummy calories that she needs to stay a healthy weight but not get overly stressed about it. My philosophy through this whole thing is: she will eat when she is hungry. She is smart enough to communicate to me when she is hungry, she is not a picky eater and she would never starve herself!

The other day, I was looking through my own baby book that my mother had put together for me in 1981-82 and I was so close to her size and shape as a child it is uncanny! Lucy and I would have been mirror images of each other! She is a little mini-me right down to the curly locks! I asked the NP and nutritionist when do you start to take in account genetics and not just cystic fibrosis. They say that they do always take into account cystic fibrosis, the age of the child and the frame and build of both parents however it is healthier and easier to fight an infection when you have a little meat on your bones!

Was also told that while fighting infection the body needs more calories...makes it difficult for mommy because while Lucy is fighting an infection and not feeling well then she usually doesn't have an appetite!

We also discussed what to look for in a daycare/preschool provider if I happen to need one for a few hours during the day while I go to back to school. They told me to look for a facility with the smallest number of children, one that is willing and able to do breathing treatments if needed, and best idea was to hire a nanny or someone from the University that is looking for experience in in-home care so she could stay in her home and not be exposed to the cesspool that is daycare.

We have a new prescription of Creon enzymes because the FDA has mandated that the company re-name the drug to take into account the overfilling of the capsules. It has been changed from Creon 5 to Creon 6. There is no difference in the two products except for the name.

Lucy, after finsihing her supply of AquADEKs, will now be taking chewable vitamins. ABDEKs is the name of the chewable. They are specially formulated for CFers just like the AquaDEKs are. The ABDEKs come in bubblegum flavor!!

I was having a discussion last week with some other CF mommies, Nathan's Fight and Cure For Naythan, about how different each CF clinic approaches and tackles sanitation methods for nebulizer cups. I asked the wonderful ladies down at Lucy's clinic yesterday and found out why vinegar is no longer an acceptable for of sanitizing (that I didn't know about.) Pseudomonas, a yucky germ, has recently become resistant to vinegar!! For Lucy's neb cups, I have always stuck them into the dishwasher or hand wash them with antibacterial soap and warm water. I had no idea that vinegar has been made a no-no! Here is a link to the CF Foundation's recommendations on how to properly sanitize your equipment.

The whole weekend was a blur but I do remember that the clinic visit on Monday was a success just as I had suspected it would be! My girl is smart, gaining wieght and getting taller by the minute and we will both be "thump-free" very soon thanks to the vest!