Oh, how I despise when people don't blog regularly. I go to check for new posts and turns out it's been weeks since they've posted anything! Now I'm the culprit. The missing blogger is back! I was getting pretty burnt out there for a while. I didn't feel like writing. Didn't feel like spilling the goods to everyone, but I'm back now refreshed as ever. Here's what you missed...
The CFRI conference in San Francisco that I attended a couple of weekends ago was completely amazing. Not only did I learn many valuable things about CF and tips on how to guide Lucy towards the best life she can ever imagine, but I also got to meet in person some of the people that I have been chatting on the inter-webs about CF for support. The CF community is an amazing group of people...so strong and supportive and I am so proud to be a part of their group. What an honor it was to meet all of them, CFers and parents alike!
The last couple of weeks, during my bloggy disappearance, I was planning a fundraiser to benefit the Cystic Fibrosis Foundation. What a Team Lucy effort it was! We held a big spaghetti dinner with a BINGO and raffle. We sold 110 tickets at $15 each and had over 50 prizes all donated by local businesses and friends of Team Lucy. That night we raised $2,700 to go directly to CFF! It was such a fun evening for all of us. Lucy ran around with the other kids and even demanded that she get to use the microphone. She sang her ABC's and received a standing ovation from everyone at the dinner! Lucy is the opposite of shy, and soaked in every single moment of the attention. What a ham!
I started back to school on Monday at the local community college. I'm taking Child Development and a Human Services class. As much as I like learning and taking classes, I wonder where in the world did summer go?! Time seems to be rushing by so fast these days right before my eyes. Lucy is growing so fast. She speaks to me like she is a four year old, and says the funniest things. She makes me laugh constantly, so much so that I need to start writing all these "Lucy-isms" down so I don't forget just how witty and funny she is!
Lucy has an open house at her school on Friday where I will be signing her up for the Fall session of Parents and Tots at WPNS. Her first day is September 9th. We are both excited about it!
Lucy has a clinic visit on Monday. I really can't wait to discuss some things with them. She has been having more stomach issues even after I decided to increase her Zenpep dose from 5 to 6 at meals. I am going to go into some things here that might be to much information for some people, so stop reading here if CF poop talk is too much for you.
For the last couple of weeks, Lucy has been having some very nasty poop and what I call anal leakage, and 2 more prolapses. The anal leakage and sudden bowel movements make it especially difficult to potty train. She is doing really well trying to get to the toilet on time, but accidents do happen. One of her proplases happened the day before we went to the CFRI conference, and the other was just two days ago. She knows what it is now and tells me when it's "out." She says to me while sitting on the toilet after struggling to push out runny, greasy poop, "You going to push in my owie now, Mommy?"
It breaks my heart, but it is bittersweet for me. I really want her to be independent and proactive in her healthcare, and I want her to know the ins and outs of own her body. She needs to be able to know at an early age when there is something wrong with her body, so she can tell me...and eventually tell her doctors. This is the first step in that. She knows what is going on, she knows exactly what I am doing and why, and even at two years old, she is not afraid of any of it. What an amazing little gal I have! She makes my heart swell with love.
So at clinic, we will definitely be discussing all of her major GI issues that are still occurring, and if things are still left up in the air, I will be making another appointment with her GI doctor to find out what we can do about these prolapses and anal leakage!
On that note, I'm signing off! It's good to be back in the blog-o-sphere. Sorry about leaving you all hanging like that!
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Kacie, you have such a great attitude towards Lucy's CF. She is very lucky to have you as a mommy!! I love how you talk about putting Lucy in charge of her health and how she needs to know her body. I never thought of it like that but it really is wise. I'm going to start adopting that attitude also. Hope all goes well with the GI doctor and you get some answers!!
ReplyDeleteI was going to comment when I first read this post, but I just now realized that I never got around to it.
ReplyDeleteMy mom shared your views on teaching my sisters and I to take charge of our own health and to be "in tune" with our own bodies. I believe this has served me very well as an adult.
I think you are amazing, Kacie! I can't get over how much I admire your attitude and the way you teach Lucy to deal with her health. I love your honesty and direct approach to everything you do. I've said it before, and I'll say it again: Lucy is so lucky to have you! (As you are to have her... what a gal!) Okay, I think I'm done gushing now.