Monday, May 31, 2010
So far this year we have tomatoes, strawberries, basil, chocolate mint, cilantro and chives.
Good lessons in agriculture, nature, nurture, and good, healthy eating! Yummy!
PS- I am getting ready to start making my own Kombucha tea! I will be starting to grow my own mother SCOBY when we get back from vacation. Apparently, there has been a huge run on the stuff in my town. It is all on sale in town and all sold out! More on the Kombucha subject later! I am already addicted to it, and need to make it myself!
Day two (Saturday), I gave her the prescribed two ounces of Magnesium Citrate AND her cap full of Miralax that she takes everyday. It got things moving a bit more than the Mag Cit by itself. She had a few loose movements, but nothing too crazy. More like sludge than poop. CLean the intestines right out!
Day three (Sunday), gave her just the Mag Cit without the Miralax, and she had a couple more movements that cleared everything all out. Now, today we are just dealing with the aftermath. A few loose ones to clear it out and then we're back on track.
Tomorrow, I will begin her on the reduced amount of Miralax (a half cap a day in juice) just to keep the rectal prolapse away...as daily maintenance. NO MORE STRAINING TO FOR NUMBER TWO! A very happy mommy and a very happy Lucy bum!
Friday, May 28, 2010
I gave her two ounces of the laxative this morning with a little apple juice. She downed it, but nothing has happened! As I write this blog, it has been over 12 hours since I gave it to her and she has pooped regular Lucy poop twice. There has been no signs of cleaning anything out! Seriously, not to be too graphic, but I was expecting huge blowouts! Maybe I am mistaken on how this laxative clean-out is supposed to work, but it doesn't seem like it is working. I am going to continue the routine tomorrow of two ounces of Mag Cit AND give her the regular cap full of Miralax that she takes everyday.
Since there was no bowel issues today due to the laxatives, we decided to take an evening trip to the Sacramento County Fair. We spent five hours exploring the grounds, letting Lucy lead the way.
Still no clean-out progress, but who cares when we had such an enjoyable evening at the fair! There is always time tomorrow for more laxatives!
This week, Jen picked the refrigerator!
Magnesium Citrate laxative and Pedialyte
right next to the grapes and chicken broth.
Thursday, May 27, 2010
I got the call yesterday from Lucy's GI doc. The abdominal x-ray she had almost two weeks ago showed that she was constipated and had lots of 'nasty' in her intestines. It needs to be cleaned out so she won't push so hard to get it out...that is what causes all the rectal proplases.
I went and bought a small ten ounce bottle of Magnesium Citrate for her to start taking today. She will be drinking only two ounces a day for three days. It can be frozen in to a slushee, mixed in apple juice, or Lucy can just down it by itself. She is amazing when it comes to taking medicine and ingesting weird flavors. The bottle actually says it is a 'sparkling laxative' that is lemon flavor, so I am guessing it is slightly bubbly.
Magnesium Citrate works in a similar way that her daily Miralax works. It is not a laxative that causes any cramping to get a body to 'go,' but instead, it pulls water from the body through the walls of the intestines making the bowels extremely loose. I will be giving Lucy a lot of Pedialyte, water and salt in the next three days just to make sure she doesn't get dehydrated.
After the three day cleanse, we will be lowering her dose of Miralax everyday and using it as needed. I will be watching very closely, as if I don't already, to see just how much Miralax she will need everyday. I will probably start her off at a half cap and go from there...more or less depending on the consistency.
It's a shame that Lucy is not fully potty trained yet. We're getting there! There are a lot of dirty diapers in my very near three day future. We will be staying home for the most part for the next three days because I don't want to clean up any big messes in public.
Wednesday, May 26, 2010
"I want to touch the froggy. Can I touch it, mommy? Look, itsa frog. Look at the froggy. Can I go ou'side and hold him?"
And, thinking that my toddler was out of her mind, imagining something that she had read in her book, I said, "What!? There is no frog in the backyard! What are you talking about? Let me see." I set the technology down, and casually got off the couch to see what the heck Lucy was talking about. When I looked, Lucy had her nose pressed against the glass of the sliding door.
She wasn't imagining the creature in the backyard, as I assumed. You know what they say about assuming! It wasn't an amphibian, but a cold-blooded reptile sunning himself on our patio!
This same day last year was my very first blog post ever. I had never blogged before, but then again, I had nothing of substance in my life to blog about. Lucy and Cystic Fibrosis has changed everything about me and they way I perceive the world, IN A GOOD WAY. It is bitter sweet for me to think that it took a little human being and a fatal disease for me to get my shit together! Just three years ago, I was a chain-smoking drunk who lived most of her life in a bar. Now, I am a mommy to Lucy and a student, and I couldn't be happier about it. Of course, there are still times when all I want is a pint of Guinness or a dirty Grey Goose martini with three olives, but I certainly don't want to go out every single night. I'd rather be home cuddling with my daughter. Every single moment is special when I am with her. Yes, even the out of control moments when I want to pull my hair out. I wouldn't give it up for the world.
As I reread the first blog I ever wrote, I can tell that my writing has changed, and my experiences have grown. I will continue to blog about mine and Lucy's daily lives and living happily and healthily as we can with Cystic Fibrosis, but things may change along the way as I learn new things about the world and about myself. There are still some subjects in my life that I choose not to blog about, and maybe some day I will be fully and openly honest with you, but for now, I'm still too scared to open up my life completely. My life and my blog is always a work in progress, and I am glad you all have decided to come along for the journey.
This blog has led me into the open arms of the CF community. There are thousands of wonderful people fighting for their lives or the lives of their children. They help keep me sane by just allowing me to vent, ask important CF questions, and talk about things that most people know nothing about...raising a happy child who happens to have a life-threatening disease. This blog has become therapy for me. I get to talk openly about the one thing that scares the hell out of me. I have met dozens of wonderful people, and am able to keep people, friends and family, in touch with what goes on with Lucy, and her health and happiness.
Thanks for following us through our life adventure and lending a helping hand along the way! I'll keep writing for years to come, if you keep reading! :)
Monday, May 24, 2010
Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
This never ever came out of the mouth of a 28 month old daughter this weekend. There is no way it was Lucy who threw adolescent attitude at her mother. She is only a toddler!
Let me set the scene for you...
It took place upstairs in Lucy's bedroom. Mommy had just finished bathing Lucy. Lucy was lying on the bed, while Mommy picked out something for her to wear that day. Just for fun, Mommy started dancing and being silly. She was singing Telephone by Lady Gaga, as it had been in her head all morning. Mommy pulled out all the old school dance moves out of her bag: the Running Man, the Cabbage Patch, and the Sprinkler. Mommy was busting a move, putting on quite a show for Lucy.
Lucy, lying on her back, turns her head real slow to look at Mommy. With one eyebrow raised, and what looked like her very first eyeroll, Lucy says to Mommy in a really slow, annoyed tone...
"You're really, really buggin' me."
Mommy, her dignity flying out the window and eyes misty, left the room immediately, so not to show Lucy how upset she was by her daughter's annoyed tone. Mommy never expected this kind of attitude to come from Lucy for another 10 years, at least. Mommy thought she would be 'cool' in the eyes of her daughter for while longer, but that has proven not to be the case. Lucy is growing up so fast, and is a very independent thinker. It scares the crap out of Mommy just thinking of what the teenage years have in store for her.
I picked up Lucy after work, and we raced home to see the new fresh water tank full of ten fish. She was so excited to see the fish and wondered if she could keep them all. With her nose pressed against the tank's glass, this is how it went:
Mommy: What do you think of the new fish? Would you like to keep them in your house?
Lucy: Look at the fish! There's a Nemo and a Dori and a Nemo and a Dori!
Mommy: Would you like to keep them and give them all special names?
Lucy: YES! I can keep them? Can I touch them and hold them?
Mommy: No, honey. They have to stay in the water or they will drown.
Lucy: I can't hold them?
Mommy: Nope. But you can look at them, feed them, and talk to them.
At 28 months old, my little girl has her very first pet...well, 10 of them to be exact! Tomorrow, we will be cleaning the tank, getting it organized, and finding a permanent place for it in Lucy's bedroom! She really couldn't be happier about it. All night she has been wandering over to the tank just to say "hello" to them, and she has even introduced all of her toys to the new members of the family.
The biggest fish "tank" I have ever owned was a small fish bowl with a dark blue and red Beta that, shortly after I bought him, took a trip down the toilet, and was replaced with a gold fish that I had won throwing ping pong balls at the county fair. This is going to be a fun project and quite an adventure for both of us!
Saturday, May 22, 2010
For this weeks entry, Jen pulled randomly out of a hat, THE BATHROOM! I was horrified and assumed she might just pick something easier for our second week, and less messy like the dining room or computer desk.
Oh, the humanity! We have to photograph our bathrooms?! The only room in the house with toothpaste on the mirror? The room that has a three foot pile of dirty laundry in the corner? The room in our house that has not only hair product on the counter, but actual hair? Well, here it goes...
That's all you get on this one. I'm not brave enough to show actual close-ups of the porcelain throne or the minor soap scum build-up in the shower. You can assume that Lucy's bath toys are always put away and the toilet brush is employed often.
Thursday, May 20, 2010
Salt, in any human body, helps to maintain the body's fluid balance by keeping the right amount of water in the right places (think mucus membranes and organs). Salt also helps our muscles to contract. Not having enough salt in the body can disturb growth, reduce appetite, and cause stomach pain, weakness, nausea, and headache. Salt is necessary in helping regulate the body's moisture.
The Cystic Fibrosis genetic mutation creates a basic defect that causes the sodium chloride in the CFer's body to not move freely and correctly throughout the cells in the body. People who have Cystic Fibrosis lose extra salt in their sweat, making it terribly important to take in the extra from their diet.
No one is really sure just how much extra salt a person with CF must take in, but the recommendation is to take in salty foods in the diet and use that salt shaker on the table freely. Some adults with CF also take salt tablets as a dietary supplement. It helps aid in the loosening of the mucus membranes in the body.
Salt is good for a CFer. It is very rare that a person with CF will have high blood pressure due to too much salt. It is very rare that a CFer will ever get too much salt, in fact, because salt is lost heavily through their sweat, they are at risk for too little salt. Especially in humid and hot weather, or if they spend a lot of time outside or exercising, it is necessary to take in more salt.
When Lucy was a baby and still exclusively breastfeeding, I still had to supplement her milky diet with salt. I would either pump my milk and give her an ounce or two in a bottle with salt sprinkled in it OR I would just sprinkle salt directly on my nipple before she nursed! She had no issues with that extremely direct way. Lucy has always craved salt, and now she loves to eat extra salty foods. Today, before we went on a trip to the park, I had stopped off at the store to pick up a few sandwiches for us. I was walking passed the drink aisle, and thought to myself, "Hey, let's see if she likes Gatorade." She has never had Gatorade before, and my salt-loving girl sucked it down like it was the last bottle on earth.
Here is a really cool list that our CF team gave me last week to help me judge just how much salt Lucy is getting in her diet:
FOOD ....Sodium in milligrams
Ramen, cup noodles (1 package) ....1430
Salt (1/4 teaspoon) ....580
Dill pickle (1 medium) ....570
Canned soup (1 cup) ....480
Hard pretzels (1 ounce) ....385
Pedialyte (1cup) ....245
Cheerios (1 cup) ....204
Gatorade Endurance (1 cup) ....200
Bacon (1 slice) ....185
Potato chips (1 ounce) ....180
Canned carrots (1/2 cup) ....177
Gatorade (1 cup) ...110
Whole milk (1 cup) ....98
Wednesday, May 19, 2010
We have some really fun things planned already! In less than two weeks, we will be headed South to Monterey, California for five days to go to the Monterey Bay Aquarium and to have tons of relaxation time on the beach! I can't wait to make a huge sand castle with Lucy, or maybe have her bury me in the sand!
I just can't wait to relax and hang out with Lucy without having to worry about homework being due! Yippee!
Tuesday, May 18, 2010
If there is no sign of PA on her culture, in 27 days we will be done with treatment, for now.
If she does culture PA again, we will probably have to continue with another 6 months of Tobi treatment, until it is gone!
Once a CFer has PA, there is always a battle with it, coming and going in their lungs. Lucy also has colonized Staphylococcus Aureus. It has permanently made a home in her lungs, but we only treat it if it starts showing symptoms.
I will be more than happy to wash my hands of Tobi when this 28 day run is over. I have this love-hate relationship with it, for sure. It adds an extra hour to our nebulizer time everyday, but the benefits of using it is tremendous. It keeps Lucy lungs healthy and that is all I could ever ask for. Lucy actually loves to wear her mask and asks for it even when it is not time for a treatment! She loves the extra hour of her PBS programming that she gets to watch when she has her mask and vest on. Her favorites are Caillou and Dragon Tales... and thank goodness for On Demand TV that allows me to play those shows 24 hours a day for free!
Monday, May 17, 2010
Okay...so much for the sunny California that everyone raves about. This spring is unusually long and rainy, which is good for the summer months here by helping fight off drought, but it is seriously putting a damper on mine and Lucy's excursion time. This same day last year it was 102 degrees and I was worrying about Lucy's salt intake and hydration, but today is 60 degrees and raining! What gives?!
Just two days ago, on Saturday, it was bright and sunny here at home. It was certainly not my amazing idea to load up the car and head out on a two hour drive to go to the beach that day. It was not me who promised Lucy a full day of sand castle making and splashing in the Pacific, only to make her turn around and come home after 45 minutes of beach walking. Nope. Not me. I would never be so cruel as to promise something like that, something of that caliber of excitement, to a two year old only to then take it all away. It was Mother Nature who shattered all of her expectations for that day.
It was not me who was so shocked and disappointed that it was a mere 48 degrees, foggy and windy on the beach when we arrived there. It was not me who stubbornly wrapped Lucy in the Moby wrap, blanket around both of us, to take a walk on the sand, bravely walking into the blistering wind. There were only about two dozen other brave souls on the beach, half of them being seagulls waiting for a snack to wash up in the surf.
It was not me who really wanted to stop on the way out at this look-out point. It was a freezing, short walk, but still quite the sight to see. Water breaking on the rocks with fog rolling all around us, and surrounded by blooming bushes and plants. It was beautiful.
It will not be me who remains persistent and tries this same trip in a couple of weeks. Now that Lucy is getting older and her first reflex is not to shove sand in her mouth, we will be heading out to this beautiful beach very often this summer. It was me who assured Lucy that we would have plenty of time in the future to build sand castles that go sky high...as soon as it gets a little warmer!
Friday, May 14, 2010
We were greeted by a happy nurse who weighed Lucy and immediately gave her a sticker. She had Lucy wrapped around her finger after that! Dr. Barad came into our room shortly, and was young and very friendly. He happily engaged Lucy while still focusing on everything I was saying. Since it was our first visit, I had to give him a
Since we had just discovered on Thursday at clinic that Dr. Grumpy miscalculated her Zenpep enzyme dosing, I told Dr. Barad that I would like to give the Zenpep at least a week to start working properly before doing anything too drastic, like a clean out with magnesium citrate or GoLytely. I really do think that now that Lucy is on the correct dosage of enzyme, she will begin to absorb food better. Just in the last 48 hours, it has shown to be effective! She has pooped less, and it is less runny!
Dr. Barad sent us over to the x-ray lab to get a "picture" of her intestines to see if there are any visible blockages or any lingering poop that needs to come out. The abdominal x-ray should show whether or not she is backed up. With every rectal prolapse she has ever had (six in the last year), she has always had frequent, runny stools, but still pushes hard to get them out, which means there could be a need for a "clean out" (enema). We should find out (via phone call) next week if she needs to be prescribed a heavy duty laxative to do a clean out at home.
Dr. Barad also gave us a lab form to take next week to a diagnostic lab to get a pancreatic elastase test done on her poop. I have to go down on Monday and get a poop kit to collect a stool sample. A pancreatic elastase test will show the levels of pancreatic enzyme she makes on her own. The last time she had a elastase test done was at 2 weeks old so the levels may have changed and would effect how we dose her enzyme pills. Her natural enzyme levels at birth were extremely low, making her very deficient and in need of a very high dose of enzymes in pill form.
I can't wait until next week when we get all the results back so we can make the changes needed to make Lucy's tummy feel more at ease! Enough is enough already!
Next week: pancreatic elastase test, x-ray results, and the throat culture from clinic...
Thanks, Jen, for the challenge, and I promise to keep it as honest as possible by never cleaning up before I take the picture. Shouldn't be too hard.
Here is where Lucy and I live with my mom. You would never tell by the tiny, modest exterior, but it is a spacious three bedroom, two bath, two level town house with a garage. Home, sweet home!
Thursday, May 13, 2010
So, on an other note, I am a little bit peeved, actually A LOT peeved with Dr. Grumpy. He miscalculated the enzyme dosing for the Zenpep!! Yeah, it's no wonder Lucy has not been absorbing anything in the last month, generic or not! He prescribed a dosing of 3 pills with meals and 2 pills with snacks, but what she really needs to be taking is 5 with meals and 3-4 with snacks! What a huge difference (a difference of 10,000 units of lipase). I was fuming today after Lucy's wonderful dietitian informed me of this, and immediately upped the dose that I give her. I am anticipating less poop and less frequent complaints of tummy aches, no thanks to Dr. Grumpy!
The best news that I received today at clinic was the what the scale read when Lucy stood on it! Lucy, despite the last month's dramatics with the generic enzymes and apparent miscalculated dosing, has gained two pounds AND one inch in the last 3 months. I couldn't believe it! I went in to today's clinic visit really expecting the worst when it came to weight gain/loss. Who knew that even with malabsorbed pooping up to 10 times a day, there is still a chance for weight gain! It was the best news, enough to almost counteract my anger towards Dr. Grumpy.
There was absolutely no issues with her breathing or lungs at this visit. She hasn't even had any signs of allergies or asthma like last year at this same time. No wheezing, no rattling, no sputum, and her oxygen saturation was at 97. The RN did a throat culture to be sent to the lab today, and the results should be in by next week. I am fairly confident that the Pseudomonas Aeruginosa that found shelter in Lucy's lungs has been "put to sleep" by the inhaled antibiotic Tobi, although she still has one more 'on cycle' of the stuff. Only time will tell.
Stay tuned for an update from Lucy's GI appointment tomorrow morning. There may be a "clean out" in her near future to help battle the constipation. You just gotta love all the CF poop talk! Thanks for reading about all the nasty details. :P
Tuesday, May 11, 2010
Then we headed over to the vintage Tower Theater to watch the documentary, Babies. Oh, what a wonderful movie it is! It was breath taking footage of four different babies from around the globe, filmed from birth to one year. One living in Namibia, one baby in Japan, one baby in Mongolia, and the other in San Francisco. There is no narrative, only occasional speaking by the mothers with no subtitles. It's just a film about the lives and milestones of human babies in their first year of life, and despite the play groups and plastic toys, or the lack of such things, the four babies all thrive and hit milestones at the same time. In fact, I thought the baby girl from Namibia seemed the most content and happy with the world around her. Lucy seemed to like the movie and even commented on the African baby "getting mommy's milk."
Lucy was the only baby at the Babies movie! It was full of couples and mother-daughter duos enjoying their Mother's Day weekend together. The funniest moment that occurred this entire weekend was a brief moment in the theater. It was during a quieter part, a lull in the movie, and Lucy sat up in her chair really straight, and let one rip! This was a loud, stinky CF fart, in public, in closed quarters while it was very quiet! I was in hysterics laughing, and so where the folks seated near by. After Lucy passed the infamous CF fart, she exclaimed, "I FARTED!" It was definitely my own baby showing her true colors during the Babies movie!
Here is Lucy outside of Tower Theater playing by the water fountain...
After the movie was over, we headed to Davis to go to the 41th annual Whole Earth Festival. It is held on the UC Davis campus in the quad. Tons of homemade, earth-friendly crafts, and sustainable, earth-friendly food vendors along with music and activities for children. I had to cut our trip to the festival short because my allergies where raging that day! There was a slight breeze and the pollen count was so high that not even multiple rinses with my Neti pot could help. I just wanted to go home and clean all the pollen off of me.
Overall, it was an amazing weekend. Relaxing, hanging out with my two favorite girls: Lucy and my mom. I had a wonderful Mother's Day and hope that all the other hard-working mothers had a beautiful day as well!
Sunday, May 9, 2010
After we got a new stash of the real stuff, we headed over to my dad's house to visit before they left for Las Vegas and the Grand Canyon for vacation. Lucy really loves to hang out with her Grandpa! She always looks forward to my dad handing over all his loose change to add to her piggy bank.
We got home Friday afternoon, and promptly left again to go to the Dixon May Fair, the oldest fair in California. We had so much fun rocking out listening to an adolescent cover band made up of 9 and 12 year old boys. It was so cute to see Lucy "moshing" around to a Black Sabbath cover.
We rode the carousel upon Lucy's request, but the rickety horse she was on needed some oiling. It was very jerky and made her a little uneasy. Here she is before the ride began...
The the request for a pony ride came at dusk. She was so excited the entire time, so excited that I am thinking of getting her some riding lessons. Her face lit up while she was on that pony. Every time that pony made a revolution with Lucy on it's back, Lucy would grin from ear to ear and yell, "I'm riding a ponieee!"
Let's also not forget the powdered sugar, chocolate and whipped cream covered funnel cake that we shared as we were leaving the fair! Oh, yummy... and a great way to end our Friday!
Sunday, May 2, 2010
And TEAM LUCY on the back (and of course, everyone carried red balloons for Connor)...
I couldn't have asked for more perfect conditions to make for a better day! When people refer to "sunny California" this is the stuff they're talking about! It was a sunny, warm May day at the Sacramento state capital.
I was honored to meet other people in our CF community yesterday. Those wonderful, supportive people that I have been speaking to via the internet for over a year now. These people, other CF mommies and adult CFers, are so special to me in so many ways! They know exactly what I am going through everyday. I was able to finally meet my friend, Tony. He is an adult CF warrior who lives in the Sacramento area. We have been internet friends for almost 2 years, so it was nice to finally put a face to the name!
The outpouring of support and love from my friends and family is what keeps me going. Without these people in my life, I would certainly crumble under the pressure. They hold me up just by being around. They make me laugh, they make me cry, and they stand up with me to love and support the one thing that means the most to me... LUCY!
A huge THANK YOU to all those that donated to help find a cure for Lucy, and to those that walked with us yesterday. I love all of you! I am not even close to being done this year.
The fundraising will continue through the summer! Stay tuned!
Saturday, May 1, 2010
Stay tuned for pictures of our Great Strides walk, our TEAM LUCY and all of our RED balloons! Our purple Team Lucy shirts turned out great, and we are all excited to turn in our money and walk, walk, walk!