Hello to everyone!
Good news on the Lucy front, things are going very well. We spent nearly 4 hours at the CF Clinic yesterday for her quarterly appointment, always such a long day. It was a nice treat to have Randy's mom go with us, Lucy has so much fun with her and Susan had some good questions for Dr. Ricker. I've made a point of taking a few of our family members with us to appointments because it's such a great way of getting insight into Lucy's CF care. We are so lucky to have such a big support system of family members and friends!
So, the good news is that after Lucy's month of the expensive inhaled TOBI antibiotic, she had a follow up throat culture that came back clean! We were so happy! Yesterday Dr. Ricker did another follow up culture that we will get back next week, praying it stays clean. In an effort to be extra cautious and eliminate any lingering bacteria that may be hiding in the lungs, he opted to have Lucy begin another month of inhaled TOBI (tobramycin through at nebulizer). Thankfully, there is a new program to help with the cost of this medication and it is much more streamlined to access the assistance than when we went through it a few months ago.
As for her growth & development, she's our little beanpole these days! So long & she's lost the baby fat look. Lucy was 26.6 lbs and 35 inches which put her in the 78% for weight & 98% for length but unfortunately only the 38% (or 35? I can't remember) for her weight for length ratio. The weight for length ratio is what they follow the closest and they would really like to see that increase 50% by age 2. As a result, I am doing everything I can to add fat and healthy calories to Lucy's diet. (And yes, this is a bit counterproductive when I'd like to lose 10lbs =) I smile each time they recommend adding olive oil to her food - thankfully we've got connections (www.sottovoce.com).
This was the first visit in a year or so that the Child Life Specialist came in to visit with us. There were two and they were both wonderful. The Child Life Specialists do many different things depending upon which part of the hospital or clinic they're focused on. But, in the case of the CF clinic, they work on helping to keep the kids entertained during long clinic appointments and recommend advice on doing the various respiratory treatments at home. They brought Lucy all kinds of little stickers, coloring crayons, etc to take home - all donated by the Tacoma Orthopaedic Guild. Even though I come with a great big bag of tricks to these appointments, Lucy of course always loves to see new things. The girls were so great, they walked right in with their yellow gowns (all of the care providers wear cover gowns & gloves at the CF clinic to prevent spreading infection from one CF'er to another) and sat on the floor instead of the chairs. It lightened the mood so much and Lucy loved them being right at her level. I think Dr. Ricker was a bit surprised when he walked in & we were all on the floor with crayons and stickers everywhere, but that's okay. =)
As for her follow up, we will be heading back in to the clinic just for a weight check and annual labs next month. She will not have a full clinic visit for another three months. This of course could change if her culture results come back worrisome or if she becomes ill (knock on wood!), but we continue to be very optimistic.
I am so proud of our little Lucy bug, she is absolutely amazing. Her patience as a toddler in a tiny exam room for nearly 4 hours blew me away! She has adjusted just great to taking 3 enzyme capsules with every feeding or snack (an increase from the 2 we've been on for a long time now) and she's the world's biggest champ wearing her vest for 30 minutes twice a day.
Thank you for everyone's support and prayers for Miss Lucy. I have another friend on my mind tonight that I would love each of you to add to your prayer list. It is my coworker, Karen Wilson from the TG ICN. Karen has worked there for many years as an LPN, she is a wonderful nurse and a fantastic friend. Last year, Karen was a huge help with TEAM LUCY at the Olympia Great Strides Walk even though she was going through treatments for recurrent breast cancer. Karen's cancer is back I believe for the 3rd or 4th time, now in the bone and quite serious, and she is fighting a very tough battle. Karen is single and at work we are collecting to help her have money to cover the basics and those with extra sick time are able to donate hours to help her keep her health insurance as she's too sick to work the necessary time. I ask you to pray for Karen's strength and that God is able to open doors to help her while she's fighting so hard. As soon as I posted info onto Facebook about the Olympia CF Walk, Karen was the first person to respond. She was asking not to walk because it's too much for her while going through treatments but instead to be involved organizing the tshirts for the walkers. Karen gives and gives and gives, she has a heart of gold and I feel so lucky that she is my friend. Think of her tonight, she's got a fantastic sense of humor, she's a kick to be around, she loves good food and great drinks, and right now she needs all the prayers she can get. God is powerful, I know He listens when we pray and I'm praying for Karen's health and strength tonight. Love you Karen!