Saturday, August 28, 2010

Abdominal Photo Shoot

We went to the radiologist yesterday to get x-rays done on Lucy's abdomen to check for any blockages or some poop that may need to be helped out with a little more laxatives. Getting x-rays done is one of the easier things that we do as far as doctor visits go.

In fact, Lucy loves to get x-rays done! She was anticipating it for a couple of days, talking about it constantly at home. She would ask me when she would be getting her "tummy picture" taken. We waited patiently in the waiting room yesterday for her very own tummy photo shoot.

Her name was called, and we were taken back into a hallway by a technician, who looked through a cabinet of hospital gowns. He led us into a "fitting room" where I shortly found out that he gave us an adult sized gown. I certainly wasn't going to chase him down for another smaller size because they always make her get done to her birthday suit anyway for stomach x-rays so they can get her rectum included. I took that adult sized gown and got a little creative with it. I felt like a I was on a ghetto version of Project Runway, trying to fit my petite toddler model with a cheap, cornflower blue piece of linen. I knotted it around her body and draped it the best I could, and even made her indulge me by walking down the hallway like it was a runway! She thought it was hilarious, but I expected a hospital version of Tim Gunn to walk in and tell me that he 'wasn't feeling it but to just work with what I have.'

...any thing to make time pass, right?

We got called into the x-ray room, and I placed Lucy sunny side up on the table. She was so excited to finally be getting her tummy picture taken! The technician instructed her to stay perfectly still, and she did! As the tech was taking the picture Lucy says, "CHEEEEESE!"

What a sweetheart!

We should be getting the results of the x-ray as soon as Lucy's GI guy takes a look at them next week. Worse case scenario is that we do another 3-day clean out with Magnesium Citrate and Miralax...not a huge deal. I'll keep you posted!

Friday, August 27, 2010

Summer Snack

Lucy's favorite snack right now is our backyard tomatoes covered in LOTS OF SALT! They are finally getting ripe on the vine. It has been such a mild summer here in California that the tomatoes are ripening so late in the season. I still have green tomatoes still on the vine, and I hope we'll be eating fresh maters well into late October.

Lucy just waltzes into the kitchen, grabs a tomato out of the basket, and heads to the sink. She even requests salt, and I never hesitate to lay it on thick! She eats is up, juice dripping down to her elbows. Deeeelish!

Thursday, August 26, 2010

Clinic Update

Clinic on Monday went well. I have always loved clinic days. It may be a nearly three hour appointment (where I must juggle entertainment for a two year old all while discussing very serious medical jargon) with Lucy's CF medical team, but I figure since we only see them every three months that it averages an hour per month to catch them up and touch bases on what is going on with Lucy.

Like I mentioned here last weekend, Lucy's stomach has been so screwed up and not normal for her. She has always had more severe stomach issues than the lung issues all beginning at birth with the meconium ileus, but it seems to be getting worse as she ages. The rectal prolapses are becoming more and more frequent, her stools are greasier and more explosive and extremely painful for her.

The consensus at clinic is that she needs to go on what is called a PPI (Proton Pump Inhibitor). She will be placed on the PPI called Nexium. A PPI is the strongest acid reducer on the market today. The difference between something like over-the-counter Rolaids or Tums (antacids) to help with your acidic stomach after eating a huge burrito, and the Nexium (PPI) that Lucy will be taking up to twice daily is that the Tums just reacts by neutralizing the already existing acid in the stomach. Lucy's new medication will actually work to inhibit production of the acid in her stomach, knocking it out before it even gets released into her little tummy.

Here's what happens when there is way too much acid in her stomach, and why she needs to take it to relieve some of her symptoms:

The enzymes that Lucy takes every time she eats to help her digest food need to be in an alkaline (opposite of acidic) environment in her small intestine to work properly. If her stomach is making too much acid and the acid is being released from her tummy to her intestines, then the enzymes cannot work! If the enzymes cannot do their job then she gets bloated, gassy, painful, greasy stools, rectal prolapses, constipation, blockages in the intestine (poop unable to go anywhere), and anal leakage (grease).

With all that said...I HOPE THE NEXIUM WORKS! We had an appointment yesterday with the GI guy, and he ordered some x-rays to be done of her abdomen again to check for any blockages. We'll be going tomorrow morning to get "pictures" taken of Lucy's insides. She really loves getting them done when I tell her it's a picture. She smiles for it and everything!

Everything else about clinic was great! Her weight was still average on the percentile scale. Her weight did drop about 4% since the last time we saw the team three months ago, but we attribute that to summertime activities. She'll shoot back up during the holidays with all the goodies we bake around here! I'm not worried.

Thursday, August 19, 2010

Blood Lines

It was sometime last week...

Lucy was getting out of the bath, and she asked what the purple and blue lines were in her skin. I told her that they are veins that carry our blood all over our bodies to keep us healthy and alive. She then asked if there was blood in her tummy, her head, and her eyes, at which I said yes to all of them.


She then reached down to her naked girly bits, and asked if she will have blood there, too, like me!!!

I about died! I told her that she will someday have blood there like me...when she grows up. She said, "Okay, Mommy," and we moved on with our day.

I never imagined I'd be having "the talk" (or forms of it) as early as two and a half years old, but such is life. She definitely keeps me on my toes, and is so incredibly observant. She's one smart cookie, and I hope she keeps asking questions!

Wednesday, August 18, 2010

Burned Out

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 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!

Sunday, August 8, 2010

Spaghetti Dinner For CF!

I am so sorry for slacking! This is my first blog post in so long! I have been extremely busy since I returned from the CFRI conference last weekend. I am putting together a Spaghetti Dinner and Raffle to all benefit the Cystic Fibrosis Foundation.

August 14th, 2010
No Host Bar at 6pm
Dinner at 6:30pm

...Spaghetti Dinner...
PartyLite BINGO
Raffle Prizes

$15 for adults and $10 for children 3-10 years.
ALL Proceeds go to the Cystic Fibrosis Foundation!

VFW Post 1985
345 West Kentucky Avenue
Woodland, Ca 95695

There will be NO tickets sales at the door, so be sure to buy them in advance! Sales end on Thursday the 12th. Tickets are for sale at the VFW and The Stag in Woodland. I also have tickets on me, so if you need me to deliver, please email me!

Can't wait to see you there! If you are unable to make it, donations can still be made to the Foundation by clicking here. Thank you for your continued support as we take huge steps towards a cure!
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