sharlie's angels

Cue Adele...

2012-01-23T21:02:00.000-08:00

It was a sad drive home from the airport yesterday. Pulling away from the curb in pouring rain after squeezing my girls goodbye and yelling "I love you's" over and over as they walked through the sliding glass doors left me very melancholy. This office scene was very similar to the scene in my car on the drive home...

It has been so much fun to be surrounded by my favorite girls these past few weekends! Although I've been battling a little bug, these visitors were the best medicine and I think I'm actually going to be able to avoid the hospital!

Here's the Instagram story:

Ali and Maddie

Getting our cuddle on while watching Downton Abby (we hooked Ali!)


Working it at Zara!

Yumm!


Stanford


A parting gift from my angel Maddie...perfect!

Suedy and Jess

What could be better than wedding dress shopping with your best friends?

Personal Shoppers....Suedy looked amazing in EVERYTHING!

A Persian lunch was a must!

Harrison was so happy to be with his Aunties!

Year in Review...Photo Journal Style!

2012-01-11T18:24:00.000-08:00

Here is my annual New Year's post that is way too long with way too many pictures! One of the things I love doing at the beginning of a New Year is reflecting on the past year. I like to think about the lessons I learned, the relationships that were created or strengthened, the successes and setbacks, the moments of strength and inspiration and all the ways my family and I were blessed. This year reflecting on those blessings was overwhelming...we were so blessed in 2011 and have so much to be thankful for.

It is especially fun for me to go through my pictures and remember some of my favorite moments.
Here are some of our favorite 2011 memories:

January -- Harrison started a new school and a new Pee Wee sports class with his best friend Thomas! Also, one of my favorite days of January was spent at La Jolla Cove watching Harrison ride around on his new scooter! It was one of those perfect San Diego Days. Ryan also started his MBA program this month!!

February -- We celebrated Harrison's 4th birthday with a rally race at the park! He was thrilled with his new "Ken Block" clothes. Also, Ryan traveled with all of his classmates to be on Price is Right, it was so fun to watch them on T.V.! I also spent time in the hospital this month and was on home I.V.'s for several weeks. Ryan, as always was my rock... just look at how good he is at changing my PICC dressing!

March -- Harrison finished his Pee Wee sports class and got his first trophy...it was kinda a big deal : )

April -- What a fun month! Harrison and I went to visited Palm Springs with my mom. It was a perfect week of playing in the pool and relaxing! Ryan also surprised me with Brandon Flowers tickets and we saw him at the House of Blues in San Diego. We saw him in L.A. too but the House of Blues is such a cool, intimate venue and it was an awesome show! At the end of April my mom and I road tripped it to Utah for my cousin's wedding. It was so special to be there!

May -- Another super fun month. Harrison and I spent another week with Grandma Coco in Las Vegas and she treated us to the BEATLES LOVE show! Harrison loves the Beatles and he was absolutely mesmerized! I finished the month off with the funnest girls night out ever... it was a SLEEPOVER! Several of my high school girl friends met up in L.A. and spent the night at Suedy's new home. Just like in high school, we stayed up pretty much all night talking and laughing!

June -- June was a tough month. I was in the hospital most of the month. Chelsea flew out to be with me and I will never forget how wonderful it was to have her there with me. She was a huge support to me and a huge help with Harrison. Linda was also amazing and was pretty much Harrison's second mom for the month! Here we are cuddled on my hospital bed, I love these boys so much!!

July -- July was recovery month and my darling cousins came to help me with Harrison! They were so fun to have in our home and such a gigantic help! It was definitely hard to let them go! We were also able to squeeze in swimming lessons for Harrison and travel to L.A. to see Ken Block and his new rally car!!! Harrison was in heaven!

August -- August was kind of a roller coaster month that started with my Double Lung transplant evaluation at Stanford. My mom was with me through the whole thing and I could never have done it without her. We came home to meet Cam and Chels and their family and they filled August with joy and laughter!! We made some amazing family memories, including Drexel's blessing!

September -- After being accepted by Stanford for a Heart and Double Lung transplant, our family made the move to Los Altos. We needed to be near Stanford hospital to become active on the list. My mom put her life on hold and made the move with us. We are so blessed to have her! This picture was taken right outside our rental home. It is so beautiful here. A few of Ryan's wonderful classmates came to visit and Suedy also made her first trip here in September!

October -- I spent a few days in the hospital in October and was pretty weak for most of the month but we had a blast taking Harrison trick or treating on our cute street! We also got a special visit from Zak, it was so good to spend a few days with him and have his spirit in our home.

November -- November was a special month. I felt strong and was able to see almost all the family. Chels came and spent several days with us and we had some great mother-daughter time and then the rest of the family was here for Thanksgiving and it was so fun to have them all here. I could not have been more grateful for their presence on that special holiday! The Air Supply Event also took place in November and it is a day I will never forget. Even thought I was not able to travel to San Diego for it, I felt the love and support so powerfully. Ryan flew down to be there and filled me in on all the amazing details. Here is a beautiful highlight video put together by Benny Ek from the event.

Air Supply - "Filling Lungs with Love" Event Highlights from Benny Ek on Vimeo.

December --December was such a fun month, celebrating the holidays in a new place was fresh and fun. We really tried to get out and explore this area and take advantage of all the fun holiday activities. The best gifts we got were our loved ones! Ric spent a lot of time here and Grammy and Grandpa were here in the beginning of December and then back at Christmas! Two times in one month was such a treat! It was also so much fun to have Suedy and Alfonso here!! The pictures are from December are on my last post but I'll put one of my favorites here of me and my sweet boy that didn't get included in the last post:

Congratulations if you made it to the end of this post! Looking back on 2011 and seeing these pictures makes me so happy. I truly love my life and am so grateful for the experiences I'm having. I feel like even though we faced some tough challenges this year, we didn't let those challenges prevent us from really living and enjoying our lives. Actually, the challenges we faced this year made the precious moments even more precious and brought our families and our friends together in such a special way. Here's to 2011 and looking forward with hope and faith for an amazing 2012! Blessings!

Christmas 2011 - It was Merry!

2012-01-01T23:07:00.000-08:00

We had many questions about how we were "holding up?" through the Holidays and especially if it was hard and/or sad to be away from home. Rest assured! We had a very merry Christmas and although we were not able to be with all of our family, we were so grateful to have our parents here to celebrate with us!

This will be a Christmas I will never forget. Yes, it was much quieter and low key (I don't remember the last Christmas I spent in a house that wasn't FULL of kiddos), but it was filled with fun and joy and lots of reflection. I love this holiday and the focus it brings to our Savior, His birth and His mission. I was especially grateful this Christmas to know that I have felt Him very close this year, guiding and watching over our family and sending so many incredible and generous angels our way to help us on this journey.

I believe that if we let them, our struggles and challenges in life can bring us closer not only to our loved ones but also to our Savior. I'm grateful for the opportunities I've had this year to grow closer to Him through some humbling circumstances. I feel a peace that has come from relinquishing control and knowing that He is in charge. Discussing Jesus's birth and life with Harrison and helping him understand how much Jesus loves us brought me further peace.

Harrison played Joseph in his Joy School nativity program. He was very attentive to the baby Jesus (which happened to be his lamby!)

Harrison was the center of attention this Christmas...and he loved it! Here he is with his Grandparents on Christmas Eve.

It's hard for a four year old when Christmas is on a Sunday. Harrison opened a few presents before church and was able to wait patiently until after church to open the rest! We got a big thumbs up on the bike : )

All dressed up for church! (I'm sorry, seriously...how cute is this boy?!?!)

I have thought a lot this season about the gifts in my life and when I look back on 2011, the overwhelming sentiment will be Gratitude. I feel helpless in ever being able to balance the scales, I have received so much. I do know however, that it is better to give than to receive so I have my work cut out for me! I hope you had a wonderful Holiday season with your loved ones and that you will be abundantly blessed in the New Year!

More Visitors... Suedy and Alfonso came to town!!

2011-12-23T22:12:00.000-08:00

Suedy and Alfonso came and voila! our house was instantly filled with warmth, laughter and fun! Harrison reveled in all the attention from his adopted auntie and uncle and was especially happy mommy and daddy relaxed a little on the i pad restrictions so Alfonso could show him all the coolest games!

First night - dinner at Iberia, a Spanish restaurant. I don't know what I enjoyed more, the food or listening to Suedy and Alfonso order our dinner without us understanding ONE WORD! The paella was insane!

We also visited Huddart Park, one of our favorite spots to take visitors! I love this girl so much, how did I get so lucky?

The boys spent some quality time together watching the model airplanes fly and visiting the TESLA dealership...Harrison could not have been happier!

We topped off the visit with a Gingerbread House decorating session before the trip back to the airport!

Needless to say, Harrison was NOT happy to see them go... it was very sad (for all of us)

Thank you Suedy and Alfonso for coming and for this adorable video! We can't wait for the next visit!!

Visitors Continued...Grammy and Grandpa time!!

2011-12-16T21:11:00.000-08:00

I love these two. I couldn't have hand picked in-laws that I love, respect and appreciate more. One of the most difficult things about being up here, is being away from Grammy and Grandpa. We loved the time we got to spend with them recently and are so happy that they are coming back to celebrate Christmas with us! Here are a few of my favorite photos from their visit...

A day in Half Moon Bay, visiting the coast and playing at Lemos Farms

Grammy and Grandpa, we adore you. Thank you for always being there for us and for your constant love and support!

Giving Thanks for Visitors!

2011-12-14T21:50:00.000-08:00

We had such a wonderful Thanksgiving holiday! This house was filled with family and nothing is more healing for me!

First, Chelsea spent a few days here for some much needed mother-daughter time right before Thanksgiving. It was so great to have my sister here. We did some early Christmas shopping in San Francisco, talked and talked and ate and ate!! It was perfect and I am ready for her to come back!

Only a day after Chelsea left, Dax, Sanam and their family, Zak, Kelli and their family and Ric showed up to celebrate Thanksgiving weekend with us. Thanksgiving is definitely one of my favorite holidays and this was one I will never forget.

We did The Muppets, we did Huddart Park, we did Questa Park, we feasted, we played games and we had a blast!

Harrison and Mom outside the movie theater

Huddart Park

Thanksgiving Day

(I rocked Mastermind)

Such fun memories!

Extra!! Extra!!

2011-12-08T11:34:00.000-08:00

Los Altos Town Crier - Waiting for the call: New Los Altos resident with cystic fibrosis awaits organ transplants

Angel Highlight #4 - Live, Love, Breathe

2011-11-29T22:28:00.001-08:00

Somer is one of my angels. She too lives and thrives joyfully despite having CF and our similar experiences have bonded us together like sisters. In fact, several years ago Ryan started to refer to us and another one of our dear friends, Sara Dun, as the "Cystic Sisters", which we shortened to Cysters and now that title is used all the time in the CF community!!

Somer is an artist and donates art to fundraisers for Cystic Fibrosis all over the country. Her talents have raised hundreds if not thousands of dollars for CF research. She is an icon in the CF community and brings compassion, humor, and light to the issues we face in a way that we can all relate to. She is beloved and I feel so grateful to have her as one of my best friends.

This is Somer's latest creation. It is called Sharlie's Angels. She is auctioning it off to raise money for the Sharlie's Angels medical fund. When I saw it, I fell in love. I feel like it epitomizes the miracle I am praying for!

If you want a beautiful original piece of art in your home or would like a unique Christmas gift, visit Somer's blog to find out more information! The auction is open for a few more days!!

Somer, you are such a blessing to me and so many! Thank you for this amazing gift!

Family Coming = Feeling Great!

2011-11-18T19:16:00.001-08:00

After several rough weeks, I am so happy to say that I've had a really good few weeks! I am definitely feeling stronger and my oxygen saturation has been improving as well. I haven't found myself as congested or breathless and that has been such a blessing! I have even started walking on my treadmill again. I think the fact that I am feeling better may have a lot to do with the fact that my sister is here now and the rest of my family is heading here for Thanksgiving!!

The night before we left San Marcos, we had a very special family gathering. It was the perfect wrap up of our fun, family-filled summer. We tried to keep it very light spirited although I knew that it would be hard to be away from them and was on the verge of tears all night until Dax and Sanam announced they had to leave and all my emotions came blubbering out. I simply couldn't let the gathering end without expressing my love and gratitude for them. The littlest kids were upstairs but the oldest kids joined the adults as we shared our thoughts and love for each other. It was a night I will never forget. My family gives me so much strength. It has been so great to have Chels here and I can't wait to be reunited with the rest of them next week!

Here are some precious pictures from that last family gathering:

Sure Love Ya!

(I will have to explain this picture and caption in a separate post)

The last picture is kind of fuzzy but I love it. This picture is my happy place...there is no place I would rather be than surrounded by my family. The only thing missing from this picture is Chels and her family. Also, my mom's husband Ric, who was taking the picture : )

Angel Highlight #3 - Filling Lungs with Love!

2011-11-04T21:16:00.000-07:00

I can't believe THIS is tomorrow!!!

I have been in complete awe as this event has come together. Heather Balliet of Amorology Weddings, her husband Troy, Erin Kaminski, and Jessica of Allora Handmade started it all and then attracted the most amazing team to help this event of love come to fruition.

My most sincere, heart felt thanks to this team of SHARLIE'S ANGELS!!! I will never forget their tireless efforts to support me and my family during this time!

The team

Heather and Troy Balliet - Amorology

Jessica Erickson - Allora Handmade

Mique Provost- The Queen Bee Market

Erin Kaminski - Classic Party Rentals

Crown Point Catering

Amir Karkouti- Surf Brothers Teriyaki

Benny Ek - Benny Ek Media Productions

Jill Thomas- Jill Thomas Photography

Cassie Salcido - Peanut Press Creative

Jenny Gilcrest - Scout PR & Consulting

Robin Mathis- Twigg Botanicals

Matt Brown- Pacific CPA

Clint Erickson - Clint Erickson Design

Ted & Aaron Cantor- Premier Image Screenprinting

Kiwi Jump

Golden Spoon Frozen Yogurt

Kip Locke

Syndea Mendioroz

Karen Brown
Teresa Kakadelas
Dennis Mathis

These video's were all put together to publicize the event and every one of them brought me to tears. I am just overwhelmed by my friends, the community and the goodness of people. I wish so much I could be there tomorrow. I'm sending Ryan on my behalf to thank people in person and to take tons of pictures : )

Thank you Jon!! This was a powerful reminder to KEEP BREATHING!

Jon Foreman , Sharlie Kaltenbach Benefit from Benny Ek on Vimeo.

You are ALL truly angels! I have a feeling I'll be watching this a lot over the next several months, it was powerful motivator for sure!

Thank you Kip and Tenley for this sweet video and for all the media coverage you did for the event! You guys are amazing!!

To see more of Kip and Tenley's media coverage go here.

Also, click here to read the article in the North County Times!

Happy Halloween!

2011-11-01T23:39:00.000-07:00

Los Altos Fall Festival:

Don't worry, Ryan and I usually don't wear matching shirts but this picture was taken on the "Virtual Out Run CF" day and we wore our shirts proudly. I pumped up my oxygen and walked two miles to out run CF! The shirts say: 2 Feet. 1 Goal. Out Run CF.


Harrison is loving all this quality time with Grandma Coco!

Celebrating Halloween with some new friends:


I was in charge of the snack and I went to "Pinterest" for a little inspiration. I also sent mummy dogs and both snacks were a hit!

Trunk or Treat:


Warming up with some hot cocoa!

Finn Mcmissile: British Intelligence

Halloween Night: Trick or Treating in a full-size candy bar neighborhood...score : )

There is a truck that looks just like Mater down the street from us. We go visit him regularly : ) Finn Mcmissile wanted to get a photo with his buddy Sir Mater!

I have to share this funny story. A boy came up to me at trunk or treat and looked at me and asked, "what are YOU?!" I was confused because I wasn't dressed up so I said, "Oh, I'm just a mom!" He gave me this puzzled look and then walked away. Ryan and I realized at the same time that he thought my oxygen tubes were part of a costume and started laughing. I commented that I really should have just swiped a gown from the hospital and gone as a CF patient!

The Mother of all Updates...

2011-10-31T00:10:00.000-07:00

Not to be confused with "the mother of all hot wheels tracks" which is the current internet video that is requested daily from Harrison!

Well we've been here about two months now and it has been a full two months! We have tried to make life here as normal as possible and we have a pretty good routine. We obviously miss home dearly but are doing our best to make this waiting time an "adventure!"

Los Altos is a charming community and we are within walking distance of the library and the adorable, quaint town center with yummy restaurants and cute boutiques. My brother Dax described the beauty of this place better than I could. He wrote about his time here on his blog. He traveled here to help us move in and as much as I appreciated his help lifting heavy boxes, setting up our computers, setting up my treadmill, and making yummy meals for us, I appreciated even more his calming brotherly presence. That presence, with his gentle shoulder squeezes and his ability to make me laugh, started our time here in the right spirit.

When we first got here, I was just off a "tune-up" (otherwise known as a three week stay in the hospital), so I was feeling relatively good. My lungs felt clear and I had a refreshing energy which was I'm sure part due to the fact that we had taken this step towards transplant and the burden of "not knowing" had lifted.

I met with my surgeons and also met the CF team here for the first time. I was encouraged by my meeting with the surgeons who would be preforming my transplant. They were very professional, yet down-to-earth. They answered all of my questions without making me feel rushed. Ryan recorded most of our conversation and I will summarize my questions and their answers in a separate post. The bottom line is that I felt very comfortable with them and had that reaffirming "good, peaceful" feeling while talking to them. Despite that good feeling, after talking to them, the reality of everything hit me very strong, and I couldn't help crying the whole way home. Ryan just held my hand and let me cry. I knew he understood. When I got home my mom hugged me and said something to this effect, "crying doesn't mean you're weak or afraid, it just means you are letting yourself feel this experience." It was comforting because I didn't know exactly why I was crying after having a good, positive appointment and I realized I was just allowing myself to "feel" the enormity of the situation without letting go of the peace and hope that is so prevalent.

These last few weeks have been a little bit rough as I got a cold that started out as a sore throat and quickly turned into fevers and congestion. Unfortunately, I am resistant to any oral antibiotics that could help and I couldn't bear the thought of going back in the hospital so I just tried to deal with it on my own by upping my treatment schedule, getting lots of rest and increasing my supplements. When the CF clinic found out I hadn't called them as soon as I started getting sick, they were NOT happy. They scheduled an appointment and then admitted me once they saw me. I am used to going into the hospital on my own terms and I felt like they were putting me in because they didn't trust me so it was very hard.

Being in a new hospital with new doctors and nurses who didn't know me was discombobulating and my physical and emotional well being spiraled downhill quickly. I wasn't sleeping well or eating well and the miscommunication was frustrating to say the least. After two days of being physically exhausted and emotionally overwhelmed, I did something I've never done. I asked my doctor to let me go home. There had been a failed PICC line attempt so I still just had a peripheral I.V.. I told him that I thought they had jumped the gun on admitting me and begged for a week to prove that I could get better on my own without committing to three to four weeks of I.V.'s plus more hospital time. He let me go on the condition that I would come in if there was any decline and that I would come to clinic in a week so he could reassess the situation. It was such a VICTORY! I continued what I had started at home before they put me in and although I am not back to baseline, I am gaining strength every day and am so glad to be home healing with my family.

That follow up appointment took place on Friday and although I was a little nervous they would think I hadn't improved enough, I felt confident in the progress I had made. Fortunately, they could also see the improvement and didn't feel I needed to be readmitted. What a relief!! I am a very compliant patient and need to work on being assertive and advocating for myself, so this was a very good lesson for me. I knew what my body needed and even though it was challenging for me to voice it to my doctor, he listened and trusted me in the end. I know that experience was good for my confidence in communicating with my doctors and will serve me in my future encounters with them.

I am so grateful for the prayers that have continued in my behalf and am certain that they played a big part in me being able to endure these past few weeks and get home from the hospital quickly. I am so so grateful for your love, support and prayers always!

Happy Halloween!

Some Say I'm a Dreamer...

2011-10-18T23:28:00.000-07:00

We are waiting patiently here in Los Altos and I realize I have not been a very diligent updater. I have an appointment with the tx team tomorrow and I will give a full report on my health status after I meet with them. It's been a rough few weeks but I feel like I am at least holding my own right now so that is encouraging.

For now, I just wanted to share something a little different. I have never recorded my dreams before and I usually can't remember anything about my dreams once I wake up no matter how much I want to recall them. I had a very vivid dream last week and it has stayed with me all week. In fact, I have thought of it every day since.

Dreaming about Lexi is a gift. It doesn't happen often, maybe a few times a year (that I'm aware of), but when I wake up and realize I've dreamed about Lex, I immediately try to fall back asleep into that same dream so I can see her again. It never works! Last week when Lexi was with me in my dream, I woke up and found to my surprise, I could remember every detail about the dream. I don't think it is a coincidence, I think I am supposed to remember this dream...especially as I am being wheeled into the operating room.

I was on an operating table, all prepped and ready to be transplanted. The room was big, light and spacious. Derek Shepherd and Meredith Grey may or may not have been there but Lexi definitely was. She was not only there, she was laying on the operating table with me. She was holding my hand and we were both calm and comfortable. As the surgeons started explaining the procedure to me; how they were going to put me to sleep and then make the incision etc. etc., I asked them where my sister was going to be as they were operating. They looked at me and said so definitively, "Oh, she's going to stay right there on the bed with you."

I thought this was a very unorthodox allowance and questioned if it was a good idea. In my dream, I didn't get the message because it was so real. But, when I woke up, I was struck with the significance and was grateful once again for the reassurance I am constantly receiving.

The beauty of this incredible life...Takes My Breath Away.

2011-10-11T22:23:00.000-07:00

These posts don't get easier to write. I am numb with sadness tonight. One of the greatest blessings of having CF is the incredible connections you make with others who have CF. On the other hand, the hardest part about having CF, BY FAR, is losing the ones you love and cherish to this devastating disease. I only met Leslie a few years ago. When we were introduced, she told me I was her hero for having the courage to go ahead with my pregnancy. I answered that she was MY HERO for showing us all how it's done...fighting so gracefully and being an example of a vibrant, beautiful and strong CFer!

This picture of us was taken last year at the Women Who Take Our Breath Away luncheon. Leslie and I were fellow nominees. As you can see by my red puffy eyes, I was grateful (and emotional) to be honored with and sitting next to one of my heros.

You will learn from the video below that Leslie lived a life full of adventure and passion despite her physical limitations. She celebrated her 50th birthday this year and inspired ALL who knew her to enjoy life and live it to the fullest. Her days and months were filled much like mine, with treatments, coughing and in and out of the hospital, but she certainly didn't let that prevent her from completely loving, living and inspiring others to "BELIEVE...anything is possible!"

Breathe Easy Sweet Leslie, you will be so dearly missed.

Angel Highlight #2 - Run for Lungs!

2011-10-07T00:41:00.000-07:00

Last Saturday, these five people were on my mind and in my heart:

Lee Taotafa
Jamie Pyatt
Corey Toomer
Rachel Hazen
Rob Hazen

They were running the St. George Marathon! I couldn't help throughout the day wondering how they were doing, and where they were on the course. I prayed several times that the strength their love and support had given me would return to them a hundred fold while they endured running 26.2 miles that day! A few months ago they set up this Give Forward site and asked their friends to donate $1 per mile to my medical fund. They have raised almost $6,000.00 already!! They shared our story with a local neighborhood paper. I am so blessed to have these people in my life. They are truly angels!

Corey Rob and Rachel

Lee Jaime

The Miracle Preceding the Miracle...

2011-09-29T00:16:00.000-07:00

I am praying for the miracle of a new heart and new lungs that will allow me to take a deep breath, which is something I have never done before. I believe in miracles and I feel a peace and a calm reassurance that my family and I will be blessed with this miracle. However, whatever the outcome of this journey will be, this is a truth... we have ALREADY EXPERIENCED A MIRACLE!

We have been overcome with emotion and gratitude these past few months as those around us have rallied to support us in so many ways. Our families, our friends, church friends, high school friends, facebook friends, CF friends, USANA friends, fellow bloggers and even strangers have enveloped us in a tight knit cocoon of strength and love that has held us steadfast in faith and hope. The fear, worry and anxiety that could abound in this situation has been completely replaced by gratitude and love. There is no time to be anxious, worried or afraid because I am too busy being overwhelmed by the innate goodness of people and absorbing the light and love being sent to me through Facebook, e-mails, my blog and our fundraising site!! It fills my heart and leaks out my eyes!!

There is a reason this blog is called Sharlie's Angels. No matter how difficult our challenges are, I believe our Father in Heaven is aware of every single one of us and knows exactly how to comfort and succor us. Throughout my life, I have been surrounded by these earth angels who lift me in my most vulnerable times. As we began this transplant journey, it was no exception. We have been so humbled by the angels that quickly encircled us during this time of need. Amazing things have happened since we started down this transplant road. As I said, it has been a MIRACLE. A series of miracles really. In my next few posts, I want to highlight a few of my angels and how they have helped ease our burdens.

To start this off, I want to express my gratitude to Jessica Erickson and Mique Provost. In one of my earlier posts I wrote, "Ask NOT and ye shall RECEIVE!" Before I had even started this transplant process, Jessica urged us to set up a medical account so she could start fundraising for my upcoming transplant or any other medical costs. It's amazing how she perceived this need without me ever asking anything of her. That is the kind of friend she is. Jessica is truly like a sister to me and has always been there for me (for 24 years!!). Mique is also like a sister, a wonderful older sister! I love these girls and their whole family with all my heart. Yesterday I went online and discovered that Jess and Miq had put together this amazing shop. Seriously?! How did I get so lucky to have best friends like them?! See, I told you...ANGELS!

They appealed to the creative online community that they are an integral part of and so many of their wonderful friends who don't know me rallied around them. They donated tutorials, printables, and advertising spots. Each purchase made in the Shop will go straight to my medical fund.

These are the generous people that donated items for the shop:

Aly from Blossom & Vine
Amanda from Every Creative Endeavor
Amy from the Idea Room
Andrea from Knitty Bitties
April from Funky Vintage Lovely
Ashley Ann from Ashley Ann Photography
Danyelle from Dandee Designs
Deanna from Domestic Chicky
Desiree from the 36th Avenue
Emily from Emily Sparks Handmade
Emmy from Much Ado About You
Heather from Angel Face Designs
Heather from Whipperberry
Jamielyn from i {heart} Nap Time
Julie from Joy’s Hope
Kendra from My Insanity
Kristyn from Lil’ Luna
Lara from Less Cake More Frosting
Linda from Craftaholics Anonymous
Lindsey from the Pleated Poppy
Megan from Brassy Apple
Nicole from Olive Blue
Rebecca from Simple As That
Stephanie from Somewhat Simple
Summer from Domestic Nest
Traci from Beneath My Heart

I am so grateful to Jess and Miq for their never-ending love and support and to all the women that stepped up to help them help me!! Angels abound!!

My Sweet Mother's Helpers...Summer update #2!

2011-09-20T19:48:00.000-07:00

This summer when I got out of the hospital, we flew two of my adorable cousins here to help me with Harrison while I continued doing my treatments at home. What can I say? I wanted to adopt these cuties and never let them go home!!! We had a blast and Harrison absolutely loved all the extra attention! Unfortunately, the week went way too fast!

On one of the days they were here, Ric took the three of them on a Harbor Cruise. He got some great photos, here are a few of my favorites:

When he pulled into my mom's driveway, I cracked up at all of them conked out in the back of his truck! Evidence of a pretty fun day?!?
It was sure hard to let these girls go home to Utah. I made them PROMISE we would have a repeat week next summer and the next...

Not only were they such an incredible help to me at a time when I needed them, I also just had so much fun with them, watching movies before bed and staying up late talking, having them come to Young Women's with me, and seeing them interact with Harrison! I know the week they were with us will be a highlight of the year for Harrison but it was also definitely a highlight for me!

"God Bless You, Honey."

2011-09-08T20:22:00.000-07:00

This is what a stranger said to me last week as I awkwardly attempted to maneuver my oxygen on wheels around tables and chairs to exit a restaurant. A week before that, in another restaurant, a girl waited for me outside the restroom as I took Harrison potty to hand me a note. I thought she was waiting for the bathroom but she just handed me this note and quickly walked away. The note said she would be praying for me and that she believed in miracles. It was a very humbling moment. People are SO GOOD.

I looked at the man who had said, "God bless you, honey" to me. He had kind and sincere eyes, and I held them for a moment and then smiled and said, "thank you." The familiar lump of gratitude rose in my throat (that lump of gratitude has been showing up a lot lately!) and stayed there the whole ride home. Because of the "lump," it was hard to talk, so instead I just reflected on a few things.

Can I share?

I remember when Lexi had to start wearing oxygen. It was hard for her and it was scary for all of us. I remember the first day she wore it to school and how she bravely rolled it into her fifth grade classroom and how crushed she was when a boy called her "tube-face." I also recall how strong she got (emotionally) and how she used humor to diffuse her self-consciousness. When she noticed people staring at her she would startle them by quickly looking at them and pulling a face or start coughing violently and comment loudly that she hoped she wasn't still contagious! She was constantly cracking us up. She also would dress up her tank and even gave it a name. Lexi, with wisdom beyond her years, made the best of her tough situation.

I have dreaded crossing the "CF milestone" of supplemental oxygen for years. Lexi only wore oxygen for a few years before she got listed and in my mind, I knew that when it came down to needing supplemental oxygen, the situation was serious. When I could not get my O2 sats to stay up this last hospital visit, I got "the oxygen lecture" from my Dr.. I will never forget him drawing his diagram on the white board in my room and saying matter-of-factly, "It's time Sharlie. You will be doing permanent damage to all of your organs if your sats keep dropping and you don't use supplemental O2." It was hard...and scary. I thought about Lex a lot. I determined to channel her strength and humor and just deal.

The first few days home were kinda tough. Ryan and I ran some errands and I was acutely aware of people doing double-takes and looking at me. I even heard a girl ask her mommy "why does that lady have that thing on her face?" Even though I was embarrassed, I just smiled. I was self-conscious and it was an adjustment that I wasn't sure I would get used to. One of those first nights home, I was putting Harrison to bed and I was performing one of our night-time rituals of telling him something on his face that I love and then kissing it. I would say, "i love your eyes" and then kiss his eyelids, and, "i love your cheeks" and then kiss his cheeks, etc. etc. After I was done kissing all over his face, he looked at me and said, "i love your oxygen" and reached his little head up to mine and kissed the tubing under my nose. It was a blessing, a tender mercy, an epiphany. As my eyes blinked back the moisture that threatened to spill over, I thought to myself that if Harrison loved me and accepted me with my funny oxygen tube face, then I really didn't care what anybody else thought. It was a little gift that allowed me to see myself through my son's eyes of love and love myself a little more in return.

Since then, I have come to appreciate my supplemental O2 on a whole different level. Yes, I still get frustrated sometimes with the feeling that I am on a leash and I still get self-conscious sometimes when I see people staring but, I also realize that this cumbersome little machine is a gift. It is not only helping me stay strong enough to get a transplant, but is also attracting love and light to me through genuine good people like the man in the restaurant. On the car ride home I realized...for the most part, people aren't staring, they are CARING. I know, cheesy, but I don't care. They are looking at me and feeling empathy, they are hoping that I'm okay and maybe even appreciating their healthy lungs a little more. I don't like to be scrutinized but I will take all the healing love and prayers I can get and if the tube on my face elicits more of that, I'm grateful.

I know God IS blessing me and I know he blesses the kind, caring and wonderful type of people who would say, "God bless you, honey" to a hopeful girl pulling an oxygen tank.

We did not let Summer pass us by!

2011-08-27T12:20:00.000-07:00

Although much of the summer revolved around my hospital stay and beginning this transplant journey, it wasn't all hospitals and transplant...

Summer is by far my favorite season and I was not going to let it pass us by! We enjoyed beach days, pool time, swimming lessons, s'mores, sunburns, being with friends and most of all, spending time with family! Here are some of the highlights!

We started off the summer with a little gymnastics class for Harrison. It was an attempt to improve his coordination. It may or may not have been successful : ) He was the only boy in the class and as you can see, he got a lot of help from the teachers!

We also enjoyed Ward Beach Days. We could only make it to a couple of them but we had a blast!

(All the mom's were so good about helping me and running after Harrison!)

Through a friend, we found the BEST swim teacher ever! She gave Harrison private lessons in my mom's pool. She was so reasonably priced and it was the best money we spent this summer. She was so great with Harrison! And after only five half hour lessons he was totally swimming on his own.

(Of course Lamby watched over all the lessons!)

One of the best things that happened this summer was the birth of my darling angel nephew Drexel. We are all so excited to have him as part of our family!! He is the fifth child of Zak and Kelli.

Harrison and I meeting Drexel for the first time, I couldn't stop kissing him!

It's truly amazing how my family and friends rallied around me this summer and helped not only me, but more importantly, Harrison create several cherished summer memories! Despite the unique health challenges I faced these last several months, we will be able to look back on this summer and remember all the fun times we spent with the people we love! Stay tuned for a few more summer fun posts!

Stanford Update

2011-08-22T19:59:00.000-07:00

It's hard to type when tears of gratitude keep blurring my vision. What I have been fervently praying for, came to pass tonight. To quote my mom, "I feel another miracle coming on!"

During the first week in August I traveled to Stanford to undergo their Double Lung Transplant Evaluation. It was four days of extensive medical tests. Although it was physically (and mentally) draining, I felt a sure sense of peace and calm that was very reassuring. For the duration of the evaluation, I knew many prayers were being heard and answered in my behalf because of the strength and hope I felt. I connected very well with the team there and despite a few concerns they mentioned to me during our clinic appointment, I felt extremely confident that the following Monday (August 8th)I would receive the great news of acceptance to their program.

I did receive a call on August 8th and was initially shocked when the doctor explained to me that after looking at the results of all of my tests, the surgeons would not consider doing a double lung transplant on me. Because my right lung collapsed in 1996, all of my organs had shifted and were stuck together with the sticky scar tissue and remnants of my damaged right lung. Ryan and I were on the phone together and we nearly crumbled with fear and uncertainty when we received that news. However, the doctor went on to explain that there was a slight possibility the surgeons would consider doing a double lung/heart transplant. They needed more information and wanted to request all my CT scans and X-ray's from 1995 on to try and track the progression of what happened to my right lung and to my heart. They gently told me to be patient and that they would be in touch when they got the information they needed.

We were with my whole family when we got that call and what we thought would be an evening of celebration, turned into a somber evening of tears, hugs and comfort. By the end of the night, we, as a family, had resolved to remain hopeful and start working on Plan B by researching centers who may be more familiar with my unique situation and/or more willing to take high risk patients. I still felt like even if Stanford would not do a double lung tx, but would do a heart/lung tx, they would be my first choice. We decided to pray specifically for that but also that we would continue to be guided and led in other options as well. After the initial disappointment wore off, the calm reassurance that this was in the Lord's hands returned fully and I was gently reminded to keep trusting.

My last request that night to my family was that we have the time of our lives the next few weeks while we awaited further notice. Chels and her whole family were here and I wanted to enjoy our cherished time with them. I did NOT want to perpetuate fear and worry but wanted to celebrate the love that exists in our family and have FUN!! Have fun we did and I have the pictures to prove it! I guess they took my request seriously because my mom drew up quite the itinerary....look forward to an upcoming post with all the details of the BEST two weeks of my year so far!

In the mean time, my mom and Ryan's dad Terry both immediately started extensive research and were both very impressed with Duke as they do over 100 lung tx's a year and despite the fact that they accept the riskiest patients who have been denied at other centers, have a very high success rate. We went ahead and started the process to get evaluated at Duke as well. I am scheduled to be evaluated there on Aug. 29th.

As you can imagine, it was quite a feat for Stanford to get all of the records they needed, let alone review them (there were likely nearly 200 films to look at!) After finally receiving all of the films, they presented my case at their meeting again tonight and I got a call from them letting me know that after careful consideration, the surgeons feel confident that a heart/double lung tx will be successful. They have accepted me to their program. I was so choked up after the news that the tx coordinator said, "are you still there?" I was there, I just couldn't talk with a lump of gratitude and relief in my throat!

Stanford was aware of and respectful about my desire to pursue Duke as another option and in fact, they sent Duke all of the results of my evaluation. After a lengthy discussion with my family tonight and following the impressions of my heart, I have decided to cancel the appointment with Duke and move forward with Stanford. I cannot discount the peaceful feelings I had there and the connection I felt with their team. I am 100% confident that they want me to survive and have only had my best interests in mind.

There is much more to discuss but I will update again soon with our next steps on this journey!

So many prayers of gratitude have already been said in our home tonight. We have expressed gratitude to our Heavenly Father for not only this outcome but also for the wonderful people in our lives who have held us in their hearts and remembered us in their prayers. We have asked that blessings will be poured out upon you for your love and goodness! Thank you, thank you!

Day 4 of TX Evaluation -- Heart Catheterization

2011-08-04T23:31:00.001-07:00

The prayers worked. Seriously, thank you, thank you. Today was a little rough and long but could have been so much worse. Again, the nurses and Doctors who attended me today were so kind and gentle...always a reminder to me that I am being watched over and blessed during this process.

I got to the hospital at 7 am and was prepped for the right heart cath. There are a few different approaches to this procedure, the best being going in through the neck and threading the scope down to the heart. The most difficult approach is going in through the groin and threading up to the heart. In that case, you have to be laying completely flat (which is a difficult position for me to breathe in) and the recovery is about 6 hours as opposed to a 2-4 hour recovery if they can go through the neck. Needless to say, I was praying the Dr. would decide to go for the neck and to my great relief, he said he would attempt that first.

After I was all prepped, they let my mom come into the big waiting area and wait by my bed with me. They were very busy and I wasn't wheeled back to the operating room until 10:00. Because I was nervous and a little restless, I decided to pass the time by saying a prayer for each person who was wheeled out of the waiting room before me. It honestly calmed my nerves and I eventually fell asleep until it was my turn to be wheeled back. My mom snapped the above picture of me right before I left and to quote my Grandpa, I am only smiling because "I didn't understand the situation!"

I was given an aspirin and a Valium orally, and a sedative in my I.V. They also gave me a local anesthetic in my neck and then proceeded with the catheterization. I was awake but felt very foggy. I had a wonderful nurse with me for the duration. He maintained eye contact with me and reassured me through the whole procedure. It was not painful but I did feel pressure in my neck as they inserted the catheter and thread it down. The entire procedure took about 45 minutes to an hour but then I had to recover in the bed for 2 hours. They brought me some fruit to snack on and then I slept. Finally they transferred me to a chair and let my mom come back to sit with me for a while until I felt stable. I felt pretty strong and was able to dress myself and walk to where the car was waiting out front.

I was so relieved they were able to go through the neck and although my neck is swollen and sore now, I know it could be worse and I am so grateful it's not!

My mom and I head home tomorrow. I am anxious to be reunited with my family, get some good rest for a few days in my own bed, process this week in more depth and get as ready physically and emotionally for what is to come.

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Day 3 of TX Evaluation...I am not a number!

2011-08-03T21:11:00.001-07:00

Well today was the big day. I met the "team" and found out if they thought I would be a good candidate for this procedure. The whole team meets every Monday and discusses the patients who they think are ready to be listed. They let me know that they would indeed be presenting my case on Monday and that I would hear from them soon after.

I felt reassured when the TX coordinator came in to take my picture. I wondered aloud why she was taking a picture of me and she replied that to this team, I am not a number. I am Sharlie. They will use my NAME, not a medical record number, when they present my case and will refer to me as Sharlie throughout the entire process. It reminded me of Sanoviv and the holistic approach they take with an emphasis on treating the whole person and it was refreshing and comforting to know that at Stanford too I would not be "a number." I continue to simply feel good about Stanford; the facility, the staff, and last but not least, the Transplant team.

There is one possible glitch and if you are praying, this is something specific that I will be praying for and would appreciate your prayers as well. In 1996 my right lung collapsed and is basically just a mass of scar tissue now. The only issue the Dr. talked to me about that could prevent the surgeons from accepting me as a patient is if they believe removing the base of the right lung with all the scar tissue will present serious complications. If that is the case, Stanford will not accept me to their program. Although that conversation made me feel a little uneasy, I am not focusing on this issue. I will deal with this only if and when I need to. However, I will be praying that this will not prevent me from being accepted and that when the time comes, the surgeons will be able to remove my lungs without any complications.

The day ended with another round of blood draws and again, it was a struggle. My poor veins decided to go on strike and it took two lab technicians, a cup of water, two heat packs and three attempts to get another large 12 vials of blood. My mom rewarded me with a trip to Whole Foods where I picked out my new favorite Fage Greek yogurt and a few perfectly ripe nectarines for dinner.

Tomorrow will be tough and I may not have the energy to do an update after the heart catheterization. I have to be at the hospital at 7 am where I will be prepped and sedated for the procedure. I was told that it takes a while to recover and come out of the sedation. I should be released at about 3:00 in the afternoon.

Thank you for your positive energy and prayers for a smooth procedure tomorrow!!

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Day 2 of Transplant Evaluation

2011-08-02T23:47:00.001-07:00

Even though I had less testing today, I was more tired at the end of my appointments than I was at the end of the day yesterday. We were actually done at about 2:45 but I didn't even last the 20 minute drive home, I was asleep practically before my mom pulled out of the parking lot.

The day started with an Esophogram. I have never had this test before and didn't know what to expect. I changed into a gown, (side note: The gowns here are so comfy. They are a jersey material and remind me of a night gown. Much better than the normal hideous, stiff gowns I'm used to! I have to take pleasure in the small things : )) then I got onto a table and was told to drink the barium/oral contrast. I was worried about the taste but I only gagged once! It wasn't too bad, chalky and bland. The technician compared it to Mylanta. They had me gulp it in various positions on the table; standing up, laying on my back, my side and my stomach as they took several different pictures of my esophagus and how it was working.

Even though the actual test wasn't too difficult, I had a bad headache when we finished. I was required to fast for 10 hours prior to the test so I wasn't sure if the headache was due to lack of food or from the contrast that I had to drink for the esophogram.

After we had a bite to eat, we were scheduled to meet one of the transplant coordinators for a transplant education lecture. There was another patient there too so the information was very general. To be honest, because we've gone through this before and done so much research on our own, there wasn't a whole lot of information that was new.

The lecture lasted about an hour and covered things like:
*how to gauge readiness for transplant (the "transplant window" is when you are sick enough to need a transplant but well enough to survive the surgery and recovery),
*how one actually gets listed,
*average wait times for lungs (2 days to 2 years depending on your "score"),
* UNOS,
*lung allocation score (the higher your score, the sooner you get lungs),
*the actual procedure (6-12 hours),
*the ICU after the surgery,
*the risks of organ rejection and infection due to being immunosuppressed (there is a fine balance between being immunosuppressed enough to prevent rejection but not enough to risk too much infection),
and
*the recovery process (1-3 months of pulmonary rehab here at Stanford after discharge).
It was a lot of information and I was still struggling with a headache so my energy level was pretty low by the end of the meeting.

Like I said, I fell asleep in the car and took two Advil when we got to the hotel and slept till dinner. I feel recharged tonight and ready for another day tomorrow. I will meet the whole transplant team and look forward to that. I have been so impressed with everybody I've met so far and feel confident that I will continue to connect well with the team at clinic tomorrow.

Thank you again for your heartfelt messages, comments and prayers. They mean more to me than you can know!

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This is happening...{brave gulp}

2011-08-02T00:07:00.001-07:00

Stanford Double Lung Transplant Evaluation

Day 1 --

The day started with 12 vials of blood and a cup of pee : ) It could only get better, right?!

Overall, I felt like the day went better than I expected. I knew today was going to be an extremely long day and I prepared myself to be very uncomfortable during the barrage of tests. There were a lot of tests and they were uncomfortable but I was so grateful for the wonderful medical technicians who took care of me today. They were honestly so kind and considerate of my comfort level. I was pleasantly surprised and felt like so many prayers that I would feel strengthened to be able to handle this day were answered.

After the blood draw I had an echocardiogram with bubble study. I was unclear what the difference between an EKG and an echocardiogram was and today I had both, so I now know the difference. The echocardiogram is basically an ultrasound of the heart and takes images of the chambers, valves and blood flow. The included bubble study meant that they had to start an I.V. and quickly push saline towards my heart. Then they asked me to cough while they pushed it in so they could make sure there was no holes between the left and the right sides of my heart. Interesting. An EKG measures the electric activity of the heart and the heart rate.

The next study was a bone density scan. I learned that from age 0 - 30 we build bone density and from age 30 on, we slowly lose bone density... so I have that going for me : ) They scanned my lower back, hips and pelvis. It was minimally invasive and didn't take too long.

Okay, then I headed down to radiology for my chest x-ray and all I have to say about that is that my technician was seriously Cam from Modern Family. His oozing gentleness and kindness was one of the best parts of my day. I was actually trying not to laugh during the test because he kept telling me how great I was doing and thanking me for who knows what (holding my breath great! ... and positioning my body perfect!) I don't think he knew that I've had literally hundreds of chest x-rays. He was seriously so so nice and I could hardly stand his chubby adorableness!

We broke for an amazing lunch. Holy cow, after the required fasting since 8:00 the night before, I was starving!! My mom and I rewarded ourselves at the California Cafe just down the street from the hospital and it was delicious! I had a trio of yumminess with an open faced steak sandwich, a side of 4 cheese mac and cheese and a Caesar salad. As Harrison would say, it was a great "pit stop" for the "fuel" I needed for the rest of the day.

Next was the meeting with the Social worker and that couldn't have gone better. I really liked the social worker and felt completely comfortable sharing my thoughts, feelings and personal history with her. She answered lots of our questions and was super nice and genuine. It was a two hour appointment.

Then I endured the hardest part of the day. An hour and a half of PFTs (pulmonary function tests) with two failed attempts to draw a blood gas to start things off (a very painful arterial stick as opposed to a vein draw). The stabbing pain that shot up my arm and down my legs when she stuck me almost had me off the chair. Unfortunately, she was not able to get it. She was a sweetheart though and said it was more painful for her to hurt me than it was for me to get hurt and I possibly believe her. I could tell she felt really bad even though I kept telling her it was okay, that I have little veins and arteries and it wasn't her lack of skill.

I was a little amused/bummed when we did the first PFT and she thought there was a glitch in the test. I asked her what went wrong and she said, "well, this can't be right because it shows your FEV1 at 19 percent" Too bad it's my lungs that are malfunctioning and not her machine. I had to explain to her that there was no glitch.

After the PFTs I had my last test of the day, a CT scan of my abdomen, pelvis, chest and sinuses. This required another I.V. for the contrast solution. The tech told me that the contrast would make me feel warm and funny and that I would feel like I wet myself but not to worry because I wouldn't really. I am so glad he told me that because sure enough, when they pushed that stuff through my veins, I instantly had the weirdest sensation that totally felt like I had just peed all down myself! I would have been freaking out if he hadn't warned me!

Tomorrow is another day of tests and appointments and I feel confident that the strength I felt today will stay with me for the duration of this evaluation. I am so grateful for the prayers that are most certainly being heard and answered. I know that the love and support I feel is carrying me through this, and although I know this process will at times be overwhelming, I will continue to be more overwhelmed with the goodness of the people in my life and with the blessings that I feel the Lord pouring down on me.
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She talks to angels ...

2011-07-29T01:12:00.001-07:00

Today Lexi would be 31. On July 28th I will always celebrate the gift her life is to me. I miss her everyday. Sometimes I feel her talking to me or more accurately, speaking to my heart...

My mom always told me and Lex that she loved coming to tuck us in at night and seeing that we were holding hands even after we'd fallen asleep. We shared bunk beds so the one on top would hang their hand down and grasp the hand that would reach up from the bottom bunk. Can you believe we could fall asleep like that?! There are times I am compelled to look down at my hands because I feel like her hand is literally hanging down and holding mine. When I feel that warm vibration of love from Lex in the palms of my hands, I remember that I am not alone and that she is keeping her promise to be an angelic guardian.

I have felt her especially close lately as I accept and pursue the next step in my C.F. journey. After Lexi died, I felt strongly that when the time came, I would not opt for a double lung transplant. I witnessed the hell and helplessly watched the suffering Lexi went through post transplant and wondered at times what it was all for. Of course it was worth it for me and for my family because we got to have her for another borrowed 18 months, but was it worth it for Lexi?

It is hard to explain but I have felt the whisperings of Lexi's spirit to my spirit confirming to me that my experience will not be her experience. I know she wants and expects me to follow in her footsteps and fight like she did to stay on this earth and not take a single breath for granted. I have so much to live for and Lexi left a powerful Legacy. Putting her trust in the Lord and enduring joyfully to the end despite the pain was one of her most poignant lessons and I could not face her if I did not apply it in my own life.

Now that I am at this place, I am grateful that my hero was also at this place and showed how to walk the transplant journey with grace, humor and unbelievable fight.

Happy birthday Lexi, please maintain a tight hold on my grasping hands.

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Day 16...that's day 16 in the hospital. Nurses beware!

2011-06-29T00:03:00.001-07:00

Believe me, I've had a few good cries here and I could tell you all about how C.F. sucks, but I'm not going to.

Instead I'd rather tell you about the moments in here that made me laugh, made me happy and gave me hope.

Whenever I get admitted, I can count on adorable notes and pictures from my nieces and nephews to cheer up my hospital walls. This time around, Sophie's note just cracked me up! My favorite lines were, "I think it's SO cool that you are so brave. I would never be able to survive with all the blood that you've seen. And, I can't believe how many things you've been through in the hospital and out! It's SO cool. You bewilder me."

Another thing I can count on is amazing support from my family. They completely rally around me and reassure me that I am not alone in this. My big sister Chelsea who I wrote about a few posts ago, arranged to fly here from Maryland the very hour she learned Ryan was taking me to the E.R.

She has four kids at home and is such a busy mom, I tried to tell her that I would be fine but she insisted on coming. I would have never asked her to leave her family but when all was said and done, I don't how I would have survived that week without her. My mom was in Israel and Ryan needed to be home with Harrison and Chelsea was just there for me when I needed her most. Ryan's parents, Zak and his family, Dax and his family and Suedy were also there for me in such a huge way; calling, visiting, bringing food (including my favorite delicious persian food) and helping with Harrison. Being with my family makes me happy so even though it's hard to be stuck in the hospital, I treasure the time I get to be with my family wherever we are!

Another thing that makes me absolutely swell with joy is being with Harrison. When I am in the hospital, nothing brightens my mood more than a visit from my sweet boy. I always hear his giggles from all the way down the hall and I get so excited to see and hold him. Cuddling with him on my bed (even if he is pushing all the buttons and basically folding me and the bed in half) makes me so happy and motivates me to stay hopeful and keep fighting!

Ryan snapped these "instagrams" on his phone.

Watching cool videos on the computer

Lazy Sunday. Harrison is nestled into my legs while I take a little nap!

The last thing I'll mention is something that brings me hope and makes me so grateful. That is the outpouring of love and support I feel from my extended family and my friends. The messages of encouragement, concern, love and promises of prayers on my behalf are not taken lightly. I am so grateful for every prayer and every positive healing thought sent my way. They are like fresh sips of air that help lift the heavy burden off my chest. They renew my faith, strengthen my confidence and bring me joy. They cause me to again marvel at all the angels I am surrounded by and leave me with soaring gratitude in my heart instead of worry or fear.

I just learned I am going home today and despite the rough few weeks I've experienced, I am leaving feeling very blessed!

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Day 15... Why my heart is broken but my faith remains strong...Breathe easy Katrina.

2011-06-10T19:17:00.001-07:00

I was so sure this was going to be a post all about Katrina's miracle, full of excitement and hope. I can hardly bare to be writing a post about losing Katrina instead.

Yesterday I pondered the fact that I have truly loved and lost and loved and lost some more and hoped and dreamed and wished and prayed. Many of my dreams and hopes and things I have fervently prayed for have come to pass but many have not.

16 years ago, I didn't believe my little sister Lex was going to pass away until she took her last breath. Despite the doctors giving her 3 days to live and the fact that she was receiving hospice care in our home, I still believed we would get a miracle and she would pull out of it once again. Why didn't this unanswered prayer destroy my spirit and my faith? In the midst of my anguish and sorrow at losing her, how could I still believe?

Something very special happened, maybe a small miracle in and of itself considering how fragile my faith was at that time. Instead of losing my faith, it was strengthened and instead of doubting my God, my beliefs were reaffirmed and became rock solid.

The pain was still there, debilitating pain and greif, but peace and an eternal knowledge were also there. I believe in God's plan for his children and I believe in His timing. I don't always understand it. I don't always know if I am strong enough to bare it, but I believe in it.

My faith and my beliefs are not a coping mechanism. They certainly help me cope with life's trials, but that is not why I believe. I have pondered the Atonement and the Plan of Salvation and have prayed to know that there really is life after death and that we really will be saved by our Redeemer if we have tried our best to love as He loved and tried our best to follow His perfect example, and my body has literally burned with confirmation in the affirmative. It is something I feel in my heart, in my brain, in my very bones. The truth of it fills my soul.

So, although I have shed many tears these last few days and my heart is broken that Katrina is gone from this earth, I believe God took her home for a reason. There had to be a reason, especially after more than forty people came forward to be tested and two selfless people (strangers to Kat) were found to be suitable donor matches.

I also believe with great joy that Katrina is celebrating a beautiful reunion with the sister she lost years ago to her same disease, Cystic Fibrosis. And last but not least, I believe Katrina is finally breathing easy.

Look at that never failing smile. I love you Katrina and will forever hold you in my heart. Give Lex a hug for me...

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Day 14...Ali's Wedding Extravaganza!

2011-06-08T17:57:00.000-07:00

Tomorrow I plan on doing an update on Katrina. I don't have all the info. yet but please keep praying, there have been developments and I believe Katrina will get her miracle!

So...today I am going to share a few pictures from my cousin's wedding. I never really blogged about it, just about how going to Utah was super hard on my health. Never mind that! This is the FUN stuff!

This wedding was unbelievable. It was so special to be in the Temple with Ali and Eric. Ali is one of the most beautiful people I know. She's gorgeous yeah, but that's not the kind of beautiful I'm talking about. Her soul is beautiful. She is wise, kind, mature beyond her years, she has a strong faith and testimony of the love of her Savior, she is generous and pure and so so fun to be with. There is not a time that we are together that I don't end up splitting my gut laughing!

Check out this stunning couple:

After the ceremony:

I love this picture of me with my mom and Grandma. I don't know if I have any pictures of just the three of us.

The Reception: (Watching Ali dance with her dad was definitely the most touching moment of the night, they were both so emotional and full of love for each other. It was beautiful.)

I truly love Ali like a sister and was honored to spend this special day with her!

Day 14 of the Healthy Home Challenge: "Plastic Islands?!?!"

Even though this book focuses on creating healthier homes, it also discusses how plastic has an impact on our much larger world.

"If not recycled or disposed of properly, plastic ends up in our waterways, degrading so slowly that there are now massive "plastic islands" floating in the Pacific and Atlantic oceans. Bit by bit, lighters, trinkets, grocery bags, and containers break into smaller fragments that fish, marine mammals, and seabirds mistake for food. This can be a lethal mistake--both for the animals and for us.

Suddenly, the toxins we've worked so hard to avoid in our home are found in the marine food chain, where they will make their way back to our dinner tables."

There are many solutions to cutting down on the amount of plastic in our homes and in our environment, but one simple and inexpensive solution is to use reusable grocery bags. I see these for sale everywhere and have accumulated quite a few. I keep them in my trunk and use them as much as I can.

I am still getting in the habit of grabbing them before I go into the store and have forgotten, but as a part of this challenge am recommitting to be more diligent in using these. Today at Target I whipped out my reusable bag!!

Day 13...A Birthday Wish

2011-06-05T21:18:00.000-07:00

This is my beautiful friend Katrina. Today is her birthday, but Cystic Fibrosis is killing her. She is in ICU, on a ventilator and she has two weeks before she loses the option of having a life-saving double lung transplant. Here is a letter from her mom:

Hello Friends and Family:

Yesterday, my daughter, Katie was moved to ICU at Thornton and was put on a ventilator. This means bluntly that we have only two weeks to discover two donated and fully vetted and qualified transplantable lung lobes or to have a cadaveric transplant and to successfully transplant those lungs. After two weeks on the ventilator there is no more opportunity for transplant. Moreover it is extremely tough for a CF patient to be able to live after being on life support for that length of time.

Here is exactly what you can do to help.

· If you are under 55, have type A or O blood and are at least 5’ 9” and are willing to give up one of your five lung lobes to Katie. Call my husband at (760) 579-8275 and we will get you tested to be a cross-match. Katrina is a very difficult match because of being transfused years ago and therefore her blood chemistry changed. The test to see if you are a suitable cross match is simple and painless. If you are a match, USC will take it from there.

· Post the need for transplant donors to every friend and Facebook contacts right now! Please ask them to consider giving one lobe to her IF they qualify. Please make certain that they understand how critical it is to act now.

· Please ask your friends, family and congregations to pray for Katie now.

· Because of the length of time it takes to find a donor…and now we have only two weeks to accomplish this…we can only identify potential donors for testing through this first week. Please understand that there is absolutely no time to waste.

Please I implore you to act now, right now. Please do not hesitate.

Thank you for your consideration in lovingly and prayerfully considering this massively bold request immediately. Please help me save my daughter’s life.

END LETTER.

I would give anything to be able to help Katrina. The hardest part about this is being so helpless. I don't want to lose another friend to this disease. It is so painful. Unfortunately, I don't think Katrina would appreciate my lungs! What I can do is send my love and all my energy and prayers for her at this time. Ryan will be tested tomorrow to see if he is a match. We don't know what else to do, we love Katrina and her husband Phil so much.

My birthday wishes for Katrina are:

That in the next few days, a compatible donor will be found and that she will receive either a cadaveric transplant or a living lobar transplant.

That she will regain her strength and be able to fully recover from this operation.

That she will celebrate many many birthdays to come and continue to bless the lives of everyone who knows her.

Happy Birthday Katrina, I believe in miracles. I love you. xoxo

Day 12...Easter 2011

2011-06-03T22:09:00.000-07:00

Easter definitely snuck up on me this year as I had just returned home from Utah and wasn't feeling very well. However, Easter is always a special holiday for me and the significance of the holiday was not diminished. If anything, it is even more poignant when I am struggling with my health because it reminds me that no matter what happens, because of Christ's sacrifice, I too will be resurrected one day and be able to be with my family forever. What an incredible gift. I don't fully understand the complexity of it but I am eternally grateful for it.

While I stayed home and did treatments and rested before church, Ryan took Harrison to his parents for a little Easter egg hunt and some special time with Grammy and Grandpa. Bless Linda for filling the eggs with almonds instead of candy!! I was thrilled and Harrison didn't know any different!

After church we had a beautiful Easter dinner at my mom's. Terry and Linda joined us as well as our dear friends Bob and Daryl. I am so grateful for my family and love spending these priceless moments with them. Despite not feeling 100%, it was a wonderful Easter!

Day 12 of the Healthy Home Challenge: Germaphobe alert!

From The Healthy Home book, "We've become obsessed with living in a germ-free environment as a result of the scare tactics employed by marketers. We have bona fide germ phobia when we could be focusing our energy on something positive, like boosting our immune systems. ...Your body, when healthy, is beautifully designed to handle germs. We don't need to live in a scrubbed-down, sterilized bubble."

This section of the book on household cleaners was so eye-opening. I know I and other Cfers have to be especially careful of germs but the book also points out that most of the solvents we are using to sanitize our homes are toxic and can break down the molecules on our skin and in our lungs.

The book encourages using products that are nontoxic and biodegradable and/or plant based. I just bought a few bottles of nontoxic, plant based cleaners and air purifiers for our home at Sprouts. It is also very easy to make your own household cleaners with a few inexpensive ingredients that most of us already have in our kitchens. There is a whole "recipe" list in the book.

The parting tip is this: If you are cleaning with products that you wouldn't eat, wear gloves!

Day 11...Breathless Mom Fundraiser

2011-06-01T21:44:00.000-07:00

Ask NOT and ye shall RECEIVE...

Last summer when I got sick and realized that a double lung transplant was probably coming sooner rather than later, one of my best friends of 25 years asked how she could help. When my only reply to Jessica was "pray for me," she decided to take matters into her own hands and asked my mom to set up a Medical Fund for me. Jessica and her sister Mique are the founders of Queen Bee Market. They ask the amazing vendors who participate in their market to share part of their proceeds with different local charities (that's how they roll... so generous!) They designated my medical fund to be the local charity for their fall 2010 market. I was simply overwhelmed.

As my journey toward transplant progresses, another dear family friend, Heidi Lee, asked my mom if she could also help. She created the "Breathless Mom" 30 day campaign to raise funds for medical expenses in the future. Just as I was overwhelmed with Mique and Jess's thoughtfulness and generosity in organizing and raising funds for me, I have been completely touched and humbled by all Heidi and her team have done for me. I know they have put in so much work and dedication to put the site together and the video together. My dear friend Lori took all the photos of me and my family and Denise Yamada, who covered Lexi's story in the news and has remained a treasured family friend, narrated the video.

I will go into the details of where I am "at" in terms of my health and transplant in a different post soon but the preparations for transplant have begun. I have felt a lot of guidance and peace during the last year and I am hopeful for a healthy, active future! The funds that have been raised have been such a blessing. It is one less thing that I need to stress and worry about as there will definitely be significant medical costs.

What amazes me is that I did not ask for my friends to do this for me, they just perceived a possible future need and took it upon themselves to help (in a MAJOR way!). I guess true friends usually do know what you need before you even ask for it. Incredible. For all who have supported these fundraising efforts, what can I say but thank you?! I feel so loved and blessed. I truly am surrounded by angels who lift me and give me strength, these campaigns have reaffirmed that to me!

Day 11 of the Healthy Home Challenge: Teflon toxicity!

From The Healthy Home book, "At high temperatures, Teflon is known to release potentially hazardous fumes and particles into the air. ...a nonstick pan at just 680 degrees F on a regular electric stove released at least six toxic gases, including two carcinogens, two global pollutants and a chemical that is known to be lethal to humans."

Wowzers! It also talks about how DuPont recommends that birds be removed from the kitchen before cooking with nonstick pans because they have been poisoned with the fumes and have suffocated after their lungs hemorrhage and fill with fluid. YIKES!

My lungs may not be as delicate as those poor little birds' lungs but I don't want to do ANYTHING to harm the 18% lung function I have left!

Today I bought a "green," PTFE (polytetrafluoroethylene) free skillet. I bought it at Target and it was about $30. I eventually want to replace all of our nonstick cookware but I use the same small skillet a few times a day, so for now, I just replaced the one I use the most. It's a start!

The book's simple solution for someone who must use a PTFE-lined pan is to keep the stove's burner on medium or lower and to never preheat an empty pan.

I have gotten such great feedback on these tips. Please remember to let me know if you are trying any of the healthy home tips and leave your contact info. either in a comment or in an email to sharlie@larsenglobal.com and I will send you The Healthy Home book as a gift!