Friday, March 26, 2010

Dylan Danger

On March 25th, 2010 at 4:27am, I became an Aunt for the very first time. My brother Brandon, and his spectacular girlfriend, Kodie, welcomed their first child, Dylan Danger, yesterday. This little boy wanted to join us on this earth three and a half weeks before the calculated due date, but he is happy and healthy and should be going home soon. He weighed six pounds and nine ounces at birth and was 20 inches long.

Here is Dylan Danger's first blog debut at only 4 hours old:
"Danger is my middle name!"

Lucy and Dylan Danger, met for the first time yesterday. She has been anticipating his arrival for months now, and frankly, I am glad he is finally here! She talks about him every single day, asking typical toddler questions in repetition...

Danger is in Kodie's tummy? What happen to Kodie's belly button? When will Danger be out of Kodie's tummy? Who will give him mommy's milk? Will I be giving him mommy's milk? Will Kodie be giving him mommy's milk? Can she hold him now? Is Danger a baby for her? Is Danger going to be her cousin? Will Danger be a girl like her?

So many questions for one little girl to ask about one little boy! She is so excited to be a big cousin and I know she will teach him all the ropes to living life in this world! The big cousin and Dylan Danger had there first meeting, and she showed all the tenderness and loving nature that I hoped she would. And I am so elated to finally begin my Auntie duties! They begin with lots of kisses!

A Quickie

Just a quick update on Lucy and her new enzymes...

Lucy went to see Dr. Grumpy on Tuesday where he checked out her belly button and gave us a few sample bottles of a new pancreatic enzyme called Zenpep. It hasn't been on the market for very long; it came out to the public at the end of 2009.

These different brands and types of enzymes are so very similar but work differently in different people. It is like comparing Pepsi and Coke. They are both a Cola, but they have slightly different formulas that make them taste different, and everyone has one that they prefer over the other. This is the same for all the enzymes. They are all taken from a pig's pancreas and formulated to replace pancreatic enzymes in a human, but they are made slightly different and work differently with every person.

Lucy has been taking Zenpep for 3 days now. There has been a reduction in her stomach's bloating, but her poop has actually gotten worse. They are looser than before and all together, clear the room, FOUL! These are classic showings of not absorbing and digesting properly. I will only wait 2 more days, and give Zenpep the benefit of the doubt, before switching Lucy back to Pancrecarb, and asking Dr. Grumpy what he thinks the next step should be. (I can't wait until her real doctor, Dr. Perez, gets back from maternity leave! I miss her!)

Lucy's belly button is still protruding a little bit but it has not gotten any worse. I will continue to keep my motherly eye on it but not worry too much about it.

Sunday, March 21, 2010

Piper's Gettin' New Lungs!!

Piper, the fabulous CFer from New York who has been on the transplant list for a new set of lungs, just got the call this morning! She had inspired me to write this blog on positivity. You can read all about the early morning call she got this morning by clicking here.

EVERYONE should be signed up to be an organ donor. Someday Lucy may need a new set of airbags, so sign up and save a life. It is easy and fast.

Saturday, March 20, 2010

Mothering Passed Down

Yesterday, I was at my grandmother's house looking through picture albums and found a photo of my 23 year old mother breastfeeding newborn baby ME in 1981. Healthy nurturing habits must be passed down through the generations, one generation teaching sons and daughters how to peacefully parent their own children. It begins early on in infancy.

My mother, in 1981, was laying the groundwork and foundation to my own parenting styles today. I must say that I learned from the best, and I hope to pass down my own natural ways of parenting to the next generation. This photo is of 26 year old me breastfeeding Lucy while she was in the NICU. The acorn doesn't fall too far from the tree.

Protruding Belly Button

A few days ago, I noticed that Lucy's belly button was sticking out, sort of protruding a little. It was sticking out enough for me to take notice since she normally has a cute little "innie" belly button. It really looks like she has an "outie" now, but still odd enough to be concerned about it, especially with all of her prior GI issues (five rectal prolapses in a year and meconium ileus at birth.)

The small lump is hard to the touch, but there is no pain involved in it. She never complains about it. I was thinking it may be a small hernia, and I made an appointment with her CF doctor to make sure it wasn't too serious. We will be seeing Dr. Grumpy on Tuesday, where we will also discuss changing her pancreatic enzymes once again! She is still having frequent poops that are loose and greasy, and she is still straining to go despite the full cap of Miralax everyday.

I really want Lucy to be referred to a GI specialist to really dig deeper into her bowel issues since they so frequently happen. They have been putting off the referral because we always seem to remedy the problem for a few months before the issues come back again. I think I will be asking and pushing a little harder this time to get to the bottom of things once and for all. Yes, the butt puns were intended!

Friday, March 19, 2010

CrackBerry Stolen!

I was only on day two of my new technology-filled life with a brand new phone, a BlackBerry Curve 8310. I have never before owned a SmartPhone and was incredibly excited to be able to handle all of my networking needs on one portable location.

How terribly sad that it had
1. taken me this long to get a SmartPhone, and
2. I am so upset that someone stole it.

The whole thing is sad to me. I should know better and keep my "things" close to me, but I was in a hurry to go nowhere and wasn't paying attention.

I was on my way to a local Mexican restaurant for dinner with Lucy and my mom. I got out of the car, opened up Lucy's door to remove her from her car seat, set the shiny new phone on top of the car so I could lug her backpack and her out, and then I stopped to check Lucy's diaper before heading in to have dinner. I stupidly and mistakenly left my brand new, shiny, oh-so-special, handheld social lifeline on top of the car.

We went into the restaurant, sat down and hadn't yet ordered. It was maybe ten minutes before I realized what I had done, and I ran out to the parking lot to get the phone. It was gone, never to be seen again.

Of course, I had yet to buy insurance for the phone; there is a 30 day grace period before you have to decide to buy insurance. I reported it stolen and found out that I would not be eligible for another great upgrade deal until November of 2011! My $10 BlackBerry was gone forever and so were the great $10 deals... so I thought. I wanted to cry.

I filed a police report with the Woodland Police Department, but for some reason I think they may have more pressing matters to deal with than my stolen BlackBerry.

My mom was nice enough to let me use her mobile upgrade to get the same $10 deal on a BlackBerry. She likes her phone, and it is in good shape, and she promised me she wouldn't be needing a new one for a while. I am able to get another new phone for the same great deal within a couple of days.

The moral of this story:
Don't be in such a hurry to get somewhere, and don't leave your phone on the top of a car. Get insurance on everything of great monetary and social connecting value just in case! Hooray for mothers who let you use their wireless upgrade because you let your phone of it's leash.

Shame on me. I learned my lesson the hard way.

Tuesday, March 16, 2010

Positive AND Realistic

I am a regular reader of Piper's blog and she recently started a thought provoking discussion about what positivity means to all of us. She is a 28 year old (the same age as I am) living with CF and is currently on the transplant list to receive a new set of lungs. She has recently called a Positive Charge: Blogger Challenge asking what positivity means to us.

Just like every case of Cystic Fibrosis is a different one, so are the lives living them. Whether you have CF or are raising a child with CF, we struggle everyday with staying positive in the face of adversity and all the challenges that CF brings. Positivity means different things to different people, and being positive can be just as unique as the disease itself. Piper asks a serious questions of all of us in the CF community, "Where does denial end and healthy positivity begin?" Are you staying 'positive' in the face of adversity, in 'denial' about it all, 'hopeful' or just being 'realistic?'

I have never been in denial about Lucy disease. The reality of CF is mine and Lucy's to live everyday, and I refuse to ignore it or deny it. My reality is that my daughter, Lucy, will die from Cystic Fibrosis. There is no maybe in the vocabulary, but there is a when. Cystic Fibrosis is a deadly genetic disease (the CF Foundation prefers to call it life-threatening) that will eventually take Lucy life, but I feel that I do have a choice about how we live our lives together while fighting this CF monster. I do have a choice about how I influence Lucy to enable her to view her world with a positive outlook. I will do everything I can to guide her on a path of happiness and truth. I will never lie to Lucy about her disease. CF is our reality and I will continue to be realistic about the disease, but I will also continue live positively with the life we have in the here and now!

While our past, present and future are always filled with the downside of CF: pills, poop, IVs, hospital stays, ports, feeding tubes, rectal prolapses, antibiotics and colonized bacteria, I never make it a negative point in our lives. Lucy loves going to the doctor. She loves wearing her mask and vest. She takes her enzymes like a champ, swallowing 7-8 pills at a time, and loves chewing her CF Source "monkey" vitamins. It may seem to Lucy that I am making these things a happy time for her. I do the best I can to make these daily treatments that she does, a positive and fun experience. These things we do everyday are the key to her good health and the ability to do more fun things to come in the future.

I never make CF treatments a focal point in our lives but they still must be done. Lucy must grow up knowing that she has to do these treatments in order to live a longer, healthier life with CF. Just as Lucy is learning to brush her teeth to help keep her teeth healthy, she will also learn that treatments must be done in order to keep her lungs healthy. The last two years that I have spent with Lucy have been the most fun I have ever had in my life. I will never take for granted the time I have with Lucy and we will be living our life to the fullest while we can. Lucy is just a regular smart, funny kid, living a fun toddler life, who happens to be living with Cystic Fibrosis.

We will continue to take walks to get ice cream:

We will continue to have fun doing amazing things, creating memories together:

I will continue to be realistic about CF and still be a positive influence in Lucy life. I will be honest with myself and Lucy at all times. I will never stop talking about this horrible disease that will eventually take Lucy's life. I will never hide my emotions from Lucy because sad moments sometimes call for a lot of tears. I will teach Lucy early on, everything there is to know about this disease so that she can feel confident and educated enough to fight this head on. I will always tell Lucy that she can do and be anything she wants to be if she puts her heart and soul into it. Sky is the limit and CF will not stop us from creating the positive, amazingly fun life that we want to lead.

It is completely possible to be 'positive' and 'realistic' at the same time.

Sunday, March 14, 2010

Riding Vacuum

Lucy loves to ride vacuum. Here is a short clip of her doing just that. Pay no attention to the mix and match pajamas and the bedhead!

She has always loved the sound of vacuums and hairdryers, even as an infant. When Lucy was just home from the NICU at nearly four weeks old, she came home with a horrible case of diaper rash and yeast infection from all the antibiotics she took while recovering from her surgery. I would give her sitz baths and air out the area with a hair dryer. The sound of the dryer made her go right to sleep or it would put her in a trance.

She has always loved the vacuum, too, trying to ride it whenever she can and helping push it around. I would wrap her up in my Moby wrap when she was smaller and vacuum the house. She would be sound asleep, comforted by being worn and the sound of the machines constant white noise.

Saturday, March 13, 2010

Lucy Unplugged

Lucy was feeling a lot better today. We hung out around the house all day and just worked on getting well and relaxing. She has made a huge improvement in her health in the last few days. No more fever, no coughing, and only a slight runny nose. I am postponing her Bactrim treatment and I'm keeping it on the shelf for another day! No need for antibiotics if it is not necessary! She fought those Staph symptoms all on her own. We will begin the next 28 day round of Tobi in the next couple of days to continue fighting the Pseudomonas. This will be her second month of Tobi.

While hanging out and relaxing all day in our pajamas, Lucy held an acoustic concert for a live studio audience me. As you can tell, she is in better spirits and was ready to put on a little show.

Wednesday, March 10, 2010


For the last three days Lucy has been battling a 100-101 degree fever off and on, and is accompanied with all joys of a stuffy, runny nose. This is always a classic sign to me that the Staph is back but we already knew that information.

The last visit we had last month to the pulmonologist for a check up after her first month of Tobi, Lucy had a culture lab come back that showed that the Pseudomonas was 'gone' but that the Staph had come back. Lucy was not showing symptoms of Staph at the time, so Dr. Perez and I decided that we would not treat it with antibiotics. Too many antibiotics makes the Pseudomonas and other bacterias resistant to the medications and deems them ineffective.

Lucy is now showing all the symptoms that she is fighting infection. She has been miserable for a few days now. She has very low energy, lots of naps have been taken, lots of water has been drank and cool baths have been taken. She still has a mild appetite, eating small snacks through out the day but never any large meals. At least she is still eating!

I called her doctor's office today. Dr. Perez is on currently on maternity leave so I had to call Dr. Grumpy. I explained to him her symptoms, what I thought it was and asked him how he might treat it or if Lucy needed to come in for another culture. Lucy will be starting her second month of Tobi in just a few days and I wondered if an inhaled antibiotic like Tobi would clear up the symptoms she has. He told me "no" and that she would have to be on an oral antibiotic in addition to the Tobi, if things did not relieve themselves within the next couple of days.

The Bactrim prescription has been filled and will be sitting on our shelf for a while. Now I will continue to help Lucy get better on her own accord without the aid of antibiotics. I would much rather her fight off this Staph by herself to help build her immune system. The Staph she has in her lungs has already colonized itself (made a permanant home there). We can treat the symptoms of Staph, the fever and runny nose, but it will never 'go away.'

Saturday, March 6, 2010

Snow Day

I received a text message from my little brother on Thursday morning, "COME PLAY IN THE SNOW!"
My brother lives in El Dorado county, located in the foothills of the Sierra Nevada Mountains in California, at about 3,500 feet in elevation. It only snows at this elevation a handful of times during the winter but on Wednesday they got a foot of fresh powder! Lucy was so excited to go see her Uncle B and to play in the snow. The entire drive, an hour and a half in the car, she kept screeching with glee and yelling, "I build a snowman, mommy!" and "I go to B's house!"

The day was action packed and full of snow! Lucy and her Uncle B take time out of their play to give me a great photo!

Lucy played with three rambunctious dogs. The four of them love the cold snow and were romping around together. There is a black Lab, the gentle giant, Mary, a Collie named Whiskey and a white poodle Ziggy.

Uncle B helped Lucy make a jolly snow person with all the adornments that a snow person should have: hat, scarf, twig arms, carrot nose, rock eyes and a smile.

Lucy loved her snow person so much that she planted a smooch right on it!

After warming up and having lunch inside, we bundled up and went back out to play more! Lucy loved to snack on the fresh powder.

She attempted to make snow angels but I think she preferred staring up at the moving clouds and bare trees.

What a great day we had hanging out with Uncle B, his expectant girlfriend Kodie and the three dogs. I am sure that we will be visiting Uncle B more often with the new baby boy on the way at the end of April.

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