Month by Month Review of Life with Kaitlyn & CF

Life with Kaitlyn and CF

    So much has happened for our little Kaitlyn since our last Scrapping for a Cure event this past March. She has had a lot of ups and downs, along with meeting new friends and having to say goodbye to some. She is such a trooper and watching her find joy in her life has been an inspiration to me and those around her.

  JULY
    In the heat of summer, Kaitlyn said hello to her new baby brother, Logan. He has brought so much joy into her life (and to our lives too). When he was first born, she had to be the one to hold him, to kiss him, to change him. She is like his second mother! Though she loves all of her brothers, Logan has a special place in her heart. Anytime he sees her, he gets a big grin on his face. And if he doesn't see her, he is always looking around for her when he hears her voice. The love between these two is so special and sweet.




  AUGUST
    Along with school starting for Kaitlyn and meeting new friends, Kaitlyn was preparing for another hospital visit.  She had developed polyps in her sinuses (due to CF). Her doctors planned a surgery to remove the polyps and help her sinus cavity drain better.



   This was a big hospitalization for Kaitlyn. Not only was this her first sinus surgery, but this was going to be her first hospital visit that she wouldn't have me, her mother, by her side every step of the way.  We were very fortunate to have family help out at the hospital since we would be doing this with baby Logan on board.  So, with a new baby in tow (3 weeks old), Kaitlyn started her hospital visit.....unfortunately, with a few hiccups.  Kaitlyn started running a 103+ fever within the first 24 hours of admission. She also had a drop in her platelet count, red blood cell, and white blood cell count; and she had a rise in her clotting time.  As the surgery date approached, her doctors were very concerned about her health. What originally started as a routine sinus surgery turned into a surgery that consisted of a bronchoscopy, EGD, bone marrow aspiration, and sinus surgery. All of these procedures were needed to help give us answers and assist in her care.
   Kaitlyn went into surgery with a vitamin K infusion to help with clotting and a platelet transfusion to help with her platelet levels. My husband and I with Baby Logan waited as she went back to surgery. As the procedures progressed, each specialist came out and gave us an update on how she was doing. I am so thankful for all of the prayers and for our Lord watching over her. After 2 1/2 hours, we were told the final surgery was performed and she had done wonderfully! Not only did she stay strong through the whole duration, but she far exceeded the doctors' expectations. A couple of hours later, she was finally delivered back to her room to recuperate from the ordeal. Though there was a lot of bleeding, she bounced back quickly and started getting back to her normal spunky self. After a week of high fevers, they finally vanished! And as we came to the end of her visit, the doctors commented on how quickly she was healing!



   Before being discharged, we got great news that her bone marrow aspiration came back normal along with her bronch and EGD showing no changes since her last procedures. The doctors were concerned with her cystic fibrosis liver disease (CFLD), so we scheduled an appointment with the Birmingham Liver Transplant Team to learn about the many options for Kaitlyn's liver disease.

SEPTEMBER
  When Kaitlyn was discharged from the hospital in late August, a friend of ours was admitted for similar reasons.....CF exacerbation along with a high fever. As we followed her progress on Facebook, we continued to pray for Danielle and her family as she fought a hard battle. On Sept 10th, we got word that Danielle passed from this world. This was such a hard blow to us, and especially to Kaitlyn. It reminds us how fragile this life is and how detrimental a cure for this disease is. Kaitlyn was already feeling stressed about learning about a possible liver transplant, but with the knowledge of Danielle passing, it brought her to lower depths. In her times of stress and sorrow, she clings to her baby brother and rocks with him.



 Of course, this didn't only effect Kaitlyn. Both of her brothers were also worried about her and her health and often expressed their fears and sorrows for what she has to face. At that time, my husband and I decided it might be good for her and the boys if we invest in a small dog as a companion. And so, we now have sweet Hazel as an addition to our family. By the end of September, we got great reports from her ENT and Pulmonologist. Her sinuses were looking perfect and her lung function was back up to 100%! We were so excited with the great news.



OCTOBER
    In October, Kaitlyn also had to meet with a new doctor, an Endocrinologist, when her blood sugar hit over 300. We are learning to control her blood sugar through diet, which will give us more time before she fully develops cystic fibrosis related diabetes (CFRD). In October, we also got to meet with the Liver Transplant Team. They informed us that her liver is still functioning enough not to warrant a liver transplant! She will be closely watched for signs of liver failure, but the doctors feel she is doing great for now. Kaitlyn also had the opportunity to star in her first beauty pageant, Pageant with Purpose. It was held in her honor to help raise money for cystic fibrosis. It was so nice to see Kaitlyn all smiles and crowned honor QUEEN!!!

 NOVEMBER
    November just started and yet it still has already had a lot of activity for Kaitlyn. Towards the end of October, we could tell that Kaitlyn's lung function was decreasing. By the time we made it to Kaitlyn's November scheduled appt with her pulmonologist, she was having difficulty breathing regularly. In just one month, Kaitlyn's lung function went from 100% to 83% and she lost a bit of weight. Though we are sad about her being admitted, we are happy that she will be well by the time we take her to Disney World at Thanksgiving. We want her healthy for her first trip to Disney World.



 And when I asked her if she was scared to go back into the hospital so soon, she exclaimed that she was happy to go into the hospital because she would be able to breath again soon. Man, do I love this girl!

 

Registration Official Open for our 2015 2 Day Craft Retreat!!!

Our 2016 Retreat will be held at Hilton Memphis: 

on April 22nd & 23rd, 2016 

Here ye Here ye. We request all princesses far and wide 

to join together with purpose 

to prevail over Cystic Fibrosis.

Gowns, Crowns and Castles too...

Nothing Short of a Royal Celebration Will Do!

Seats are limited so don't miss the magic by waiting until the clock strikes midnight!

We are looking forward to another amazing retreat!

We are so excited to help create HOPE for those with Cystic Fibrosis

while having such a great time with such an enjoyable group of people that

share our passion for  crafting and finding a cure for CF!

Our theme for the event will be:

"Princess with Purpose: Prevailing over Cystic Fibrosis"

The 2 Day retreat includes:

32 hours of continuous crafting

2 Continetal Breakfast

2 Lunches provided by Local Sponsors

2 Hilton catered dinners

Friday costume and game night

Saturday  t-shirt and spa day

silent auction, goody bags, door prizes, and raffles

6 FEET of table space for each crafter.

Online purchase available for seats, t shirts and classes & make sure to complete and send in the online registration form  (or see the pdf attachment at bottom of page for snail mail or email.)

Step 1:  Purchase Online Now!

Step 2:  complete your Online registration  form.

 

Visit our website for updates, FAQ, and more information!

www.scrappingforacure.com

Time to Talk of Many Things:

... of  hope & SFAC 2015, of fundraising & tomorrows, and of cabbages & kings

Fundraising for Cystic Fibrosis
You are Making a Difference, Bringing Hope

   I am so excited to have our sixth annual 'Scrapping for a Cure' scrapbooking retreat in the books. It was a lot of fun and very successful. For our 2015 event, we had 48 participants, a dozen various vendors, and dozens of volunteers helping us every step of the way. I am so thankful for everyone that participated in any way and capacity. Because of you, we were able to double our fundraising from last year, raising over $8000 in donations for Cystic Fibrosis Foundation. We plan to present a check for $8400 to CFF on Saturday May 2nd at the annual Great Strides at the Memphis Zoo. With every dollar raised for CFF, we are truly making a difference in finding a cure for Cystic Fibrosis.

   It may not seem much to volunteer an hour of your time or donate a little money, but when putting together a fundraising event, it all adds up to make a huge difference.

   My family and I got the opportunity to participate in a local CF run in April. We do it every year, and it is nice to chat with other CF families that are going through the same trials. This year was a little heartbreaking, though. Two CFers weren't able to make it to the event this year. One has been very sick and was still in the hospital. She is such a fighter and we think and pray for her regularly. The other one passed away shortly after last year's CF run. Both are under 15 yrs of age. It is hard to see the heartache, knowing that with a disease this severe, a simple cold can quickly change into something life threatening.  Though Kaitlyn has had a rough year and a half, I am so thankful for her health and her dedicated medical team. I know we are truly blessed. She is getting stronger with each passing month. With each fundraiser held to help find a cure, it gives each of us CF families hope.
                                           

We are already starting to plan for 2016, the seventh annual Scrapping for a Cure. We hope to have some details within the next month or two. Please be mindful of our Facebook and Website pages, they will have the latest information.

                                                   

To help boost our funds for the 2016 event, we are already starting our mini fundraising projects. 1) Fundraising Yard Sales!!- We will be hosting one in the Shoals Area (May)  and one in the Memphis area (June). If you have anything you wish to donate, we would greatly appreciate it....and feel free to come and shop! Dates, times, and locations will be posted on Facebook soon. 2) Tastefully Simple Fundraiser- If you have never tried Tastefully Simple, you are missing out. If you have tried it, reorder your supplies through me! I LOVE their products. In honor of May being CF awareness month, I am hosting a Tastefully Simple Catalog Party for the Month of May. A portion will be donated back to CF. We were able to raise $200 for CF from our last Tastefully Simple Fundraisers! To place an order, just PM me (Rachael McGuire, Alabama or Scrapping for a Cure) through Facebook. I will get you taken care of!

Thank you for your support in helping us find a cure for CF!

-Rachael McGuire

“Curiouser & Curiouser” : Our 2015 Teachers & Classes

“Curiouser & Curiouser” creative classes for our 2015 SFAC 2 Day Retreat:

We look forward to offering free fab grabs [wonderful free take-and-makes and demos] throughout the event for all to enjoy! And as standard, we are offering a great selection of classes for those that want to continue to learn in a high quality classroom setting from great instructors and at a reasonable price. This year we are proud to have a separate classroom space from our main cropping room. This means less distractions and better class time with the instructor.

So without further ado, let me introduce our instructors and their classes for this year. These teachers are donating time (and often some product) to help keep the prices of these classes as low as possible for our event. We thank them for their time and talent!

NEW: we have added an online shop for convenience for those that prefer to purchase online!

You can purchase tickets to the event and the classes listed below at https://squareup.com/market/scrapping-for-a-cure

(Seating is very limited and classes are primarily pre-register only. We cannot guarantee a class's availability the day of the event.)

__________________________________________________________________________

Judy Hardwick-

Our return croppers will recognize Judy from her talent, her creative classes, and her warm smile!

Judy is from Alabama and has been scrapbooking for over ten years and enjoys sharing

and teaching “faithbooking” classes whenever possible.

Her teaching experience includes faithbooking classes at Classy
Scrappers, Crop Connection, Scrapfest, Creating Keepsakes Convention, Croppin' 'Round the
Clock, Midwest Scrapbook Association, and Simply Southern Scrapbook Convention as well
as local classes, independently and with churches. She enjoys combining her gift of teaching
with her love of the Lord, photography, and scrapbooking. In her classes, Judy uses a variety
of techniques and embellishments as she encourages others to put their faith on their
scrapbook pages as they see God face to face in their daily lives. Check out her blog http://www.bepresentbereal.blogspot.com/

__________________________________________________________________________

“Look for the Magic”- Art Journal Class - by Judy Hardwick

Class Capacity: 20 – Price: $15 Friday March 27^th 1:30-3:00pm

Students will learn the basics of art journaling: upcycling and preparing your book; how to create stand alone pages as well as pages with their own thoughts. Students will also be shown the following techniques: sketching, creative lettering, painting over photos, and collage; with at least 2 of these completed on pages in their books. Students will not have a completed book at the end of class as art journaling is an on-going process...however they will have their basic book and the tools to continue this magical & wonderful journey!

Student Bring the following Tools:

• sketch paper [thicker than computer paper; Instructor will provide some]
• colored pencils [any brand, they do not have to be expensive, crayola is fine]
• scissors
• adhesive / glue stick
• quotes / song lyrics that they like

__________________________________________________________________________

Alissa Trowbridge-

Many of you remember Alissa's memorable card kits and superb classes from Eclectica. We are so proud to have her joining us at this event and donating her talents to provide us with 2 great classes that you just don’t want to miss!

Alissa has been scrapbooking and paper crafting for over 14 years. In addition to currently being on the Design Team at Back Porch Memories Kit Club, she has taught classes at local scrapbook stores and at industry trade shows throughout the years. She has also proudly served on a variety of manufacturer design teams.

While she loves scrapbooking, she is also quite taken with card making and altering. Alissa has been fortunate to have many of her cards and projects published in Paper Crafts, Card Maker, Scrapbook & Cards Today, various special edition card making magazines and industry publications.

Alissa currently resides near Nashville with her husband and son.

You can check out more of Alissa's stuff at Backporch memories blog http://backporchmemories.blogspot.com/
and purchase their kits here http://www.backporchmemories.com/

__________________________________________________________________________

“Perfect Vacation” Layout Class – by Alissa Trowbridge

Class Capacity: 23 – Price: $15 Friday March 27^th 3:30-5:00pm

Bon Voyage! In this vacation-themed class, you’ll create three designer projects - a two-page layout, a single page layout and a quick card using up the scraps. We’ll make all of this using the fun and versatile collection called “Perfect Vacation” by Imaginisce. These papers look great with traditional vacation pictures, but any weekend getaway, day trip or even “staycation” photos will do. Any work we don’t complete in class will be easy to finish back at your table or at home.

Student Bring the following Tools:

• Basic Tool Kit (trimmer, scissors, tape runner)
• Pop Dots
• Glue Dots
• Corner Rounder
• Ruler (if you like to be precise)
• Optional: photos for 2-page spread titled “Perfect Vacation”: (2) photos that can be cropped to 4x4” and (7) photos that can be cropped to 3½ x 3½“
• Optional: photos for single page spread titled “Good Times” that can be cropped to the following: (1) 3 ½ x 5½”, (2) 2½ x 3½” and (1) 2 x 2½”

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“6x6 Paper Pad Play” Layouts & Cards Class – by Alissa Trowbridge

Class Capacity: 19 – Price: $15 Saturday March 28^th 1:00-2:30pm

Are you a 6x6 paper pad collector? Or maybe you love the cute size but aren’t sure what to do with it? These adorable paper pads are an economical and FUN way to add to your stash, whether you’re a scrapbooker, card maker or both. In this class, we’ll create two single page layouts and four paper crafted cards using papers from a partial 6x6 paper pad collection - Echo Park’s darling “Simple Life.” Any work we don’t complete in class will be easy to finish back at your table or at home.

Student Bring the following Tools:

• Basic Tool Kit (trimmer, scissors, tape runner)
• Pop Dots
• Glue Dots
• Corner Rounder
• Ruler (if you like to be precise)
• Optional: photos for single page layout called “Lovely Day”: (3) 2 x 2” and (2) 6 x 4 OR (1) 6 x 4 and (2) 3 x 4”
• Optional: photos for single page layout called “Every Day is a Gift”: (1) 4 x 6” and (1) photo that can be cropped to 3½ x 3½”

__________________________________________________________________________

Melinda Everitt-

Our local croppers know the quality and style of CTMH director Melinda Everitt. Her local classes and events are always popular. We just adore the fun she has in store for us this year at Scrapping for a Cure!

“I have been a Close to My Heart Consultant for 7 years and have loved every minute of it. I joined because I love our fabulous products and wanted everything, so of course I needed the discount! The products were so easy to use that I shared my joy in creating with others and have now built up a team of fantastic Consultants. I love to teach so I have monthly workshops and crops. Customer service is of the utmost importance to me. Our tagline is "Let Me Show You How" and I believe in that! Email me for information on my crops and workshops or to schedule a fun gathering or workshop. I would also love to have you on my team of Consultants whether you would like to sell or just want the discount. I will help you become the Consultant you want to be”.

You can find Melinda and her CTMH products here http://www.melindaeveritt.ctmh.com and visit her blog here http://www.ifyoublingit.blogspot.com/

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“Relax & Stay a While” Summer Mini-Album Class – by Melinda Everitt

Class Capacity: 30 – Price: $15 Saturday March 28^th 10:00-11:30pm

You can almost hear the waves and feel the breeze in your hair & sun on your face just by looking at this beautiful mini album that Melinda has prepared for our event. Techniques will include stamping, sanding, dry embossing, fussy cutting, ink distressing and mini album assembly.

Students need to bring:

• basic tool kit: scissors, paper trimmer, adhesive
• 3D Foam Tape or Pop up dots
• sponge dauber or sponge
• warm brown ink (CTMH Saddle)
• Barn red ink (CTMH Barn Red)
• glue pen or Xyron
• rosin bag/baby powder/corn starch (to remove stickiness from stickers)

__________________________________________________________________________

Anna Maneclang-

We at Scrapping for a Cure are so excited to have Anna joining us this year to teach her beautiful art of lettering. Make sure to check out her local company Poplar Press on Facebook and at http://www.poplarpress.com

“Poplar Press is located in my hometown of Memphis, Tennessee. I am married to my high school sweetheart, Gil, and we are loving the simple little life that we've created together. Gil is a teacher and he is a huge help in running Poplar Press. Our Plott Hound, Sampson, and our Dachshund, June, are a big part of our lives too. I'm a grown up daddy's girl and my dad is one of my biggest supporters. My mom is also an artist. I am very lucky to have my sweet grandparents live right next door. Gil and I both attended Mississippi State University and we cheer for our bulldogs any chance we get. I went to the University of Memphis for nursing school and now (in addition to owning Poplar Press) I work as a pediatric nurse.

Designing and owning Poplar Press is a dream come true for me. I've always been an artistic person. I've dabbled in all sorts of different crafts, but my true passion is hand lettering and stationery. Through the years I've often had people tell me that they liked my handwriting, and I was always the kid in school who was getting in trouble for doodling all over her papers. I designed the invitations for my own wedding in 2011 and did all the calligraphy on the envelopes. I enjoyed doing those, but I never imagined that it would turn into what it is today. I had friends ask me to address their invitations, and from there my love for calligraphy and all things paper has grown and grown. Hand lettering takes something that we often take for granted--language--and makes it even more beautiful. I love the endless creative possibilities that stationery and calligraphy offers. I love that my inspirational prints and Bible verses can give people encouragement on a hard day and that my cards can bring smiles and fun to people. I always leave the inside of my cards blank because I really like to encourage people to write a message from the heart and not to just rely on a standard greeting card message.

Because I am self-taught, my calligraphy and lettering is not like any other artist's. Some of my pieces have been years in the making--quotes or verses that I have swooned over for years--and some of my pieces have originated from doodles on the side of napkins.”

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“Whimsical Calligraphy 101” Modern Calligraphy Class – by Anna Maneclang

Class Capacity: 15 – Price: $30 Saturday March 28^th 3:00-4:30pm

This class regularly retails for $55. Anna is providing us with a 45% discount and students are provided a basic calligraphy starting kit

Grab some of your friends and join me for a fun afternoon of modern calligraphy to raise money for the Cystic Fibrosis Foundation!

This low-key class focuses on the basics of modern calligraphy--this is not your grandma's calligraphy class! Modern calligraphy puts a funky twist on the traditional writing style. In this class you'll learn about the tools of calligraphy, the anatomy of lettering, and the movements of modern calligraphy.

These materials are included in the price of the class and are yours to take home with you:

• 2 of my favorite calligraphy nibs
• 1 pen staff
• 1 ounce of black ink
• 1 pad of calligraphy paper

From the CF corner

From the CF corner

Shortly after Kaitlyn and I got back from our month long beach excursion, we geared up for another huge adventure. Kaitlyn was so lucky to have been granted a wish by a local wish foundation, Magic Moments. By granting one of Kaitlyn's many wishes, they sent our family on a 6 day vacation aboard the Disney Wonder Cruise ship. This was our children's first experience with Disney and they were very excited. Magic Moments also helped Kaitlyn receive her very first American Girl Doll, with matching pajamas.  We were so thankful that Kaitlyn's health was cooperative and no health issues hindered us from leaving.

   Though we were a little sleep deprived because of our early flight to Miami, the kids were all smiles and bouncing around the airport.

Unfortunately, I forgot to pack a few crucial medicines for Kaitlyn. So, while my awesome husband had his own adventure finding the medicines in Miami, the kids and I hung out at the Miami airport.

Kaitlyn was so excited to meet some of her favorite Disney characters. Magic Moments did such a wonderful job making her feel special and helping her meet a variety of princesses.

Kaitlyn and her brothers were so excited to visit Grand Cayman Islands and Cozumel, Mexico. They loved the novelty of visiting another country. 

  Towards the end of our trip, the wish foundation made it possible for us to meet the captain and Mickey in a private photo session. I am so thankful that Kaitlyn was able to have so many wishes granted through just one experience. These organizations are truly amazing and help make children with such burdens feel normal and cherished.


  Since our November cruise, Kaitlyn's health has been great, considering it being the winter. All CF families have to worry about the many viruses and bacteria spread during the season. With a weakened immune system, it makes CF patients an easy target and can cause a domino effect once a virus starts to attack their system. Her December appointment was great and gave us hope. Her lung function, that is typically on a slow decline, is now slowly getting better. We are so thankful for her medical team and for all of the prayers from our friends and family. She has been out of the hospital for 5 months and is still continuing to improve.

 

A Very Merry Unbirthday to You!

Missed out on our early bird offer? Well, Don't be sad. We want to throw you an UNBIRTHDAY registration celebration....

Don't be late, check those clocks, and make sure you are not precicely 2 days late. Arrival time for our event is a strict 12:00pm on Friday HOWEVER... if you register by January 31st (must be postmarked by this date) you will receive an unbirthday guest ticket to arrive early. Unbirthday tickets allow you to arrive and begin set up and cropping at 10:00am that Friday. That's a bonus of 2 extra hours of fun time.

* those that have already registered have qualified for this offer and will receive an unbirthday ticket.
* sorry but Unbirthday tickets are non-transferable and can only be used by the individual named on the ticket.