Conner Jones

I have been delaying this post for a few days now because every time I think about Conner Jones and his family, I cry. The news of Conner's death really rocked my world. Even though CF is in my life every single day, Conner's story really, truly puts into perspective how fragile life is, and how lovingly and delicately it should be treated. Conner lost his valiant fight against CF and Prune Belly Disease at the young age of seven. You can read about his story here, on Sarah's (his mom) blog.

I never knew Conner. I have never met Sarah or Brad Jones in person, although if I did I would probably hug them and never let go. Because of Sarah's raw emotion and brutal honesty on her blog, I feel like I have known them forever. My heart aches for them, for their loss. My words can't even describe the emotions that I have had in the last few days since Conner's passing, so I cannot even fathom what Sarah and Brad have to go through. I realized that not only do I hate cystic fibrosis with every inch of my being, but I realized that I'm pretty scared of it...mostly it's unpredictability.

CF is different for every person fighting it. No two stories are ever the same. It treats everyone differently, and yet the outcome is always the same. I hate it. It scares the shit out of me. My goal from the beginning, when Lucy was diagnosed two and a half years ago, has always been to stay positive because that is what Lucy will emulate. Monkey see, monkey do. And to stay honest with myself and with Lucy. Always...even if that means talking about death.

Talking with Lucy now about death is an obvious "no" at two years old, but I must prepare myself mentally to be able to be completely honest with her when the time comes. Huge strides are being made constantly in the CF research world to help not only prolong the life of CFers, but make it a better, healthier life for them. I find this extremely encouraging in that Lucy may live to see 60, but I don't think we will see a cure for CF in Lucy's lifetime. I may catch some flack from some people about that statement because it certainly is not thinking positively, and we fight so hard for research and a cure. You can click here to find out how I feel about being realistic.

While I feel I must be honest with Lucy about ALL aspects of CF and all that it entails, because I will never lie to her about it, I really want her to focus on the life she has and how great it can be and will be. I want Lucy to get everything she can out of life. Take it and run with it. I want her to know that her life is fragile, and that every day should be lived to the fullest.

The Jones family portrays love at it's finest and fullest. A parent's love for a child runs deeper than any other emotion. The willingness to fight to the death, the power to love someone so deeply; it cannot be stopped. I will never forget as long as I live, Conner Jones and his family. Conner is an inspiration to me. His fight, his spirit and his strength is heroic. Sarah and Brad's fight for their son's life, their spirit and their strength at a time of such deep loss and grief is heartening.

Breathe easy now, Connerman. I know I will never forget you.

The New Arrival

The difference between the old infant vest wrap that she used to wear, the black vest she was currently wearing, and the new one we received in the mail today is like night and day!

Here are some of the differences that we noticed right away:

• Lucy loved the pink color! It makes it a little more exciting to wear for a two year old, for now at least.
• The material is soft and the Velcro is soft so it doesn't rub Lucy in all the wrong places. When the vest is shaking and vibrating, the material rubs against her skin and would cause irritation, especially in the last few minutes because it is set to increase in speed. Now, she is irritation-free. No neck or armpit rubbing!
• On the old black vest, there used to be holes on the sides that would blow out excess air. It was cold and noisy! Not anymore!
• The new pink vest is quieter! The old black vest used to make slapping noises when it really got going at high speeds, and was louder than the compressor. Now, all we hear is the compressor.
• The new vest is machine washable making it easier to fight off all the bad germs that we so diligently fight. The inner air bladder comes out so easily, and the outer shell can be washed and color safe bleach can even be used for even more thorough disinfecting.
  

Oh, Lucy! She loves her new vest...

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Overnight Delivery

I called and ordered Lucy the new vest from Hill-Rom. This new and improved vest will help my peace of mind because it's now washable! The bladder insert is removable so I can machine wash the vest, and with Pseudomonas, Staph and other germs being a constant threat to Lucy's health, I would love to be able to wash the vest that she wears every single day.

Here is a link for you to see what the vest looks like. I can't wait for it to be delivered tomorrow! I'll post pictures as of Lucy putting it to use as soon as we get it. She's going to look great in pink!

This should be a great improvement on the one we have now... It's colorful in a bright pink color instead of black, it is machine washable unlike her old vest, the tubes that come off the side of the vest that hook up to the compressor are movable and adjustable (old tubes poke out of the sides directly under her armpits and it irritates her), AND the word on the CF street is that the new vest doesn't blow out excess air on the sides making it not so cold during morning treatments!

The Big 2-9

Yesterday marked my 29th trip around the sun! I had a great time celebrating with friends and family in the past few days. One special treat was Lucy singing the "birthday song" for me yesterday morning. She is so sweet!

My mom and Lucy got me the best gift that we can all benefit from...and ice cream maker! I made my first batch of homemade strawberry ice cream. It was a hit and only took 40 minutes to make. It will be so easy to make high calorie frozen treats for Lucy this summer. I guess I should go out and buy some sugar cones.

On Monday night, a good friend and I went out and got our hair done at Deeda Salon in Sacramento. They had an all day fundraiser Cuts For a Cause, and all the proceeds from the day's cuts, waxes and blowouts went to the Cystic Fibrosis Foundation. The fundraiser was brought about because of one boy's story. Simon is the nephew of one of the hair stylists. My friend and I were able to get fabulous hair cuts and also supported my favorite charity.

Just today I picked the date for another Team Lucy fundraiser to benefit the Foundation. Friday, August 13th will be Team Lucy's Spaghetti Dinner and raffle at the VFW post 1985 in Woodland, California. I am planning some big things for this event. More details will be available as I get them narrowed down, but I am hoping for a DJ or karaoke to follow the dinner and raffle.

Team Lucy has almost reached their goal this year of $10,000 dollars for the CF Foundation. We currently have $6,633.82 raised for this year! We'll keep on fundraising until we get to our goal, and until we find a cure.

Sesame Street Live!

Tonight,
we went to Sesame Street Live: 1-2-3 Imagine!
Lucy was so excited and patiently waiting for the show to begin.
She just couldn't wait for Elmo, Abby Cadaby and Big Bird to come out and play! She was loving the big stage, and asked if she could dance on it.

Completely in awe of everything around her, she stared at all the kids and all the souvenirs sparkling in the crowd before the show began.

She now has her very own over-priced Elmo spinning vortex of plastic lighting, and couldn't be happier about it!
"Look Mommy!"

Let the wild rumpus start!
She laughed, smiled, giggled, squealed, clapped, stomped her feet, wiggled, moved, shook her booty, and used her imagination the entire show.
Her eyes never left the stage, and the smile never left her face!

The ultimate Lucy favorite:
ELMO's World!
with Dorothy the Goldfish and Mr. Noodle.

Oh, we had a great time! Even my mom and I enjoyed ourselves...even if we were only there to see her reaction!
PRICELESS!

The Goings On Lately

Lucy's insurance is back on track now. All the paper work was squared away, and I was able to get Lucy's medications filled today. She went two weeks without the enzyme Zenpep. Luckily, I had saved her "old" enzyme, Pancrecarb in the back of the cupboard from when we made the last switch months ago. I gave her Pancrecarb during the insurance debacle and they worked well enough...just to get by.

After our vacation in Monterey and Lucy two nights of fever there, she is now feeling well, and only has a slight cough when she runs around and exerts energy. She fought off that bug with NO antibiotics! I'm so proud of her! With her being healthy, we are ready to really begin our summer fun!

On Friday, my mom and I are taking Lucy to see Sesame Street Live: 1 2 3 Imagine! I can't wait to see her face light up when she sees Elmo and Abby Cadaby in person!

I will have some minor dramatics in July. I finally got a court date to finally get child support. I filed a case for child support nearly a year ago, and Lucy's dad and I will have it out in court since he still refuses to pay a dime.

More news in the financial department...This week I broke down, choked back my own pride, and applied for temporary government aid. Holding back tears, I filled out the paperwork and had a meeting with a social worker. Lucy and I qualify for food stamps (EBT card) and cash aid through CalWORKs, although the actual amount has yet to be determined. It takes roughly 30 days for the case to get fully approved. This is something I never in a million years thought I would have to do, but I have been assured that it is what is best for Lucy so she can get everything she needs at this time.

OH! And then...I went into traffic court the other day to make a payment on an old ticket, and the woman in the office informed me that there is another outstanding ticket from 2006 in the system! I said, "WHAT?! I was just in court for this ticket just a few months ago and nothing was ever mentioned about another ticket from 2006?! I don't even own that car anymore!" She proceeds to get me a copy of the ticket, which I can't even recall getting because back then...well, I was pretty drunk most of the time and don't remember much of it. She then says that it is $1,200+ for the fine! My mind was boggled as I picked yet another court date to sort out my very old traffic issues. UGH!

BUT there is good news! I was accepted for a scholarship to go to the CFRI conference in Redwood City at the end of July! I am so excited to not only meet the CF moms, dads and adult CFers, but also learn so much about CF that I don't know already. I can't wait to hear about new, upcoming CF drugs being approved by the FDA as we speak, new CF treatments, and cutting edge doctors willing to speak and educate! I can't wait to get into our support groups with other parents and discuss CF related topics and gush about how wonderful and resilient our children are! I will be bringing a couple of boxes of tissue for that weekend, that's for sure! Here is this year's schedule of all the things I will be doing there!

Also, I can't wait to go camping this year! It is so convenient that my dad and his wife bought a 5th wheel trailer last year. We are able to have all the dirty, hiking, cook-outs, s'mores, fishing experiences of camping, but still have the conveniences of being able to plug in a nebulizer and vest to do treatments multiple times a day. We plan on doing a really long trip probably mid-July!

My birthday is next week, on the 22nd. I will be turning 29 years young! I have nothing planned for that day, and will probably be working that night since I need the money. I do have some pretty cool plans for the night before, on Monday! A friend and I are going to DEEDA salon in Sacramento to get our hair cut and styles, and guess what?!?!?! Proceeds from the cuts and eye brow waxes that day will benefit the CF FOUNDATION! We plan on getting dinner and drinks after we get all pretty at the salon for my favorite charity!

I am hoping to get past all the negative things coming at me and really enjoy this summer! Lucy is at such a great age to really be able to enjoy getting down and dirty with me. Swimming, camping, hiking, fishing and fun adventures are coming our way! This is my favorite time of year and I can't wait to share it with Lucy!

Playing Catch-Up

I'm still playing catch up from our vacation in Monterey. This was on our last day. We went to the beach before hitting the road; she was fever-free and happy! I love toe pictures...can't you tell?!

The Aquarium

Short and sweet today... The Monterey Bay Aquarium on vacation last week. We all had the best time! Lots of amazing sea creatures and habitats to see. Lots to be learned about ocean conservation. Lots of jelly fish, sea horses that looked like kelp, sea otters, sea stars to touch and feel, and even penguins and flamingos! The whole place is breathtaking!

The first full day of our Monterey vacation, after Lucy's fever broke the first night, we went to the Dennis The Menace park. The playground is amazing! Lucy was so excited to be there even though she had just had a fever only hours before. It seems as my girl just rolls with the CF punches and is still able to enjoy life...no matter what. Fever schmever!


The playground was action packed and loaded with so many fun things to do. I am keeping the park pictures to a minimum because we still have wonderful Aquarium pictures and beach pictures to go through! I'll spare you the intricate details.


There were five different play structures, each designed for differently for certain age groups. It didn't matter to Lucy. She hit them all!


Lots of tunnels to walk and crawl through. Cement ones that go under ground, metal welded tunnels painted cool colors, and the plastic ones that make Lucy's hair stand on end...

An amazing 50 foot extension bridge that shook when she walked across.

This is the end of our play visit. You can see in her eyes that she was not feeling well. My poor girl needed a nap.

After the park, we went over to the shoreline and walked the California coast...Lucy wrapped in the Moby wrap...in and out of napping and wave watching.

Bad Timing Fever

We went to Monterey, California for vacation last week. Our goal was to relax, enjoy the sun and sand, and go to the Monterey Bay Aquarium. Our first day arriving at the hotel, Lucy was acting strangely. We checked in, had dinner, and went to the hotel complimentary Happy Hour in the lobby. Lucy's attention span was not as good as it usually is, and she would act out and be ornery for no reason. I passed it off as toddler behavior because we had sat in a car for hours...maybe she was just full of pent up energy.

Here she is at Happy Hour enjoying her orange juice mocktail and bar snacks...

That night, after Happy Hour, we went for a swim in the indoor heated pool, and then went up to the room to bed. She woke me up by tossing and turning in the bed at about 3 in the morning. She was on FIRE! Her whole body was burning up. I, of course, never thought to bring a thermometer on vacation because she rarely gets fevers. This was a very high one! She slept through the morning, tossing and turning the entire time. She woke up around 7 or 8 am, and I put her into a cool bath because she was still burning up and acting a little delirious. My mom went to the nearest store to get Tylenol. She was miserable and we were on vacation! I felt so bad.

After her bath and some medication to make her more comfortable, I nursed her back to sleep...until about 10 am when the fever broke. She woke up in a cold sweat, but seemed to feel a little better. We got ready for the day, and just decided to wing it. Take it easy, let her lead the way, and follow her cues.

We went to the park in Monterey, The Dennis The Menace Park, upon her request. We left as soon as she showed signs of being droopy and lethargic again. She is always really good at telling me when she has had enough. We went for a walk on the coastline with her cuddled in the Moby wrap, and had another high fever that night while she was sleeping.

NOW, we get to the extremely bad timing portion of her illness. If it wasn't bad enough that she was sick on her vacation...I got a phone call during our trip saying that her Medi-Cal was canceled.

LUCY CURRENTLY HAS NO INSURANCE. The social worker, who has been working on Lucy's case for over two years, never put our new address into the file. When Lucy was up for redetermination this year (in March), the packet of paperwork was sent to the wrong house. I never received it, and then didn't get a phone call until after it was already canceled. I just want to make note, for the record, that this is not the first time this social worker has "lost" our paperwork. Last year, I got a call from our pharmacy saying that Lucy's medication could not be filled because she was no longer covered by Partnership. Turns out, the social worker "lost" our paperwork in the pile of crap on her desk. Whoopsie.

I am doing the paperwork now, to get it all straightened out, but she told me it may take up to two weeks to get it approved! What?! Lucy has an appointment with GI next week...guess I'll be rescheduling that, AND FINDING A NEW SOCIAL WORKER!

There will be more posts to come with pictures from our trip. After Lucy's two nights of high fevers, she was feeling much better. We went to the Aquarium and the beach. The last two days of our time together was enjoyable!