Noelle and Alyssa B.
Born: November 19, 2005 (Noelle)
October 2, 2002 (Alyssa)
Illness: Cystic Fibrosis, Pancreatic Insufficient (Noelle)
Cystic Fibrosis (Alyssa)
Quilt Deadline: October 1, 2009
Theme of Quilt: Quilt is now full and closed.  Please check the other children for stitching information.

The following interests are mainly to help you get to know the children better.
You may use what you can towards the theme of the quilt, but make sure that you stitch within the theme. 

Noelle's interests are: Noelle loves girly things - pink and purple. She loves to collect little things, and has a knack for patterns.  She is a joyful child - always drawn to very girly things.

Alyssa's interests are: Alyssa loves pink, brown and anything girly!  She loves hannah montana, high school musical, and she LOVES to dance and do gymnastics.  She is creative - very very creative - and loves to draw, paint, and create anything tactile with her hands.  She is a budding artist!

The girls live in Deleware.

Click here to see the squares for Noelle and Alyssa as they come in for them!  (Please keep in mind that their quilts were not opened to stitchers until May 2009)
Biography

NOELLE:
Noelle cannot be described as anything other than vibrant. She is 3 years old with a BIG personality and a lot of opinions!

Noelle was born 3 years ago and has literally been sick since the day she was born. She was born with a UTI, and at 10 days of age, we were back in the hospital with her for IV treatment, spinal taps, etc.  Her life started with an emotional bang.

At about 8 months of age, Noelle began with ear infections and the on again off again rounds of antibiotics.  For 9 straight months, Noelle was on an antibiotic every 3 weeks for a new infection. We finally were able to get her some tubes in her ears, and have her adenoids removed - but during the surgery for her tubes, Noelle's ENT surgeon commented that Noelle had the "thickest mucous I've ever seen in my life". 

We thought nothing of this comment - but about 2 months later, she started to have some respiratory symptoms requiring nebulizer treatments.  For the simple reason that  she needed a nebulizer, we decided to take her to a pulmonologist to make sure there wasn't something more severe going on.  The pulmonologist suggested we have a Sweat test completed to see about CF because 1. Noelle was very small for her age, and 2. it was a blank in her chart.  The pulmonologist specifically stated that she didnt believe that was the cause of Noelle's respiratory issues, but she wanted to be sure.

At this point, Noelle was constantly coughing. She couldn't sleep at night without coughing, and she was miserable. Dark circles under her eyes, not eating, on constant medications, and mom and dad were just as ragged.

Sure enough, Noelle was diagnosed with Cystic Fibrosis in the spring of 2008 - just after her 2nd birthday.  Miraculously, we started the regimen of treatments with her and all of her symptoms dissipated. She was normal, not coughing, no more infections, and life was semi-normal.  We were adjusting to the new normal of Noelle's percussion treatments - 3 times a day using plastic cupping tools to perform airway clearance on her, and 2x/day inhaler treatments.  BUT, she wasn't coughing any more!

Noelle had a great year - her summer and fall were wonderful. She wasn't sick more than a usual child would be, and we had finally settled into a normal routine with her.  Unfortunately, there was one tiny (not so tiny) problem - Noelle wasn't gaining weight at all.  In the year since she had been diagnosed, Noelle hadn't gained a single ounce of weight - and she had only grown 1/8 of an inch. 

The doctors recently tested Noelle for pancreatic insufficiency. At 3.5 years old and only 24 pounds, Noelle is very very little. She stands a good 4 inches under her classmates, and should weigh at least 10 pounds more than she does now.  She was diagnosed as being Pancreatic Insufficient.

In addition to her respiratory meds, Noelle is now required to take Creon 5 - an enzyme supplement before each meal. She takes 3 pills before breakfast, lunch and dinner, and 2 pills before her snacks. It totals about 15 pills a day for this 3 year old little girl. 

Noelle is such a charismatic child though!  Instead of breaking the enzymes into applesauce, only 2 days into her new medications, Noelle learned how to swallow the pills on her own.  At the age of 3, she can swallow a pill better than most adults.

She's incredible - and smart - and she absolutely lights up a room.  Noelle's got a fight ahead of her -but if anyone can handle it, we know that our fun and spunky 3 year old certainly can.

ALYSSA:
Alyssa is an amazing child.  There truly is no other way to describe her.  Up until a year ago, she was in perfect health and was growing normally. 

About 1 year ago our 3 year old daughter Noelle was diagnosed with Cystic Fibrosis.  As a precaution, we took our daughter Alyssa to the pulmonologist to be tested for the cystic fibrosis gene - thinking she was just a carrier at most.  She had never had a symptom at all, and no one ever expected her to have the full blown disease. 

The test came back positive, and we were all shocked! Even the pulmonologist was beyond shocked, and even apologized to us for implying that there was no way Alyssa could have had CF. 

Ever since Alyssa's diagnosis, the rollercoaster started moving full force.  She was healthy for a few months, and then the symptoms started and it's been crazy ever since.  She suffers from daily coughing and has to complete airway clearance 3 times a day via a VEST system.  Her vest has been a lifesaver - it allows her to be self sufficient in her airway clearance instead of mommy banging on her back for 30 minutes 3 times a day. 

Alyssa takes many different medications at various times of the year, but her regular meds include Albuterol, Flovent, Zyrtec and usually a dose of antibiotics once a month.  She also uses a non-medical treatment called Hypertonic Saline to help clear her sinuses and keep her mucous thin.

Since her diagnosis last year, Alyssa has been hospitalized twice for Cystic Fibrosis.  The first time was simple and quick - for a bit of dehydration.  The second time was in the fall, and Alyssa acquired a nasty sinus infection that would not go away. She was admitted to CHOP for 14 days of IV antibiotics and treatment.  During her sick times, like this one, Alyssa generally takes 9 different medications - and is completing airway clearance 5 times a day.

As a 6 year old, CF has been a difficult experience for Alyssa. She frequently will ask us "mommy, when will my cystic fibrosis go away?" - and it's heartbreaking to tell her that it will never go away.  It's heartbreaking to imagine telling her that she may never have children, or be able to go a full day without a coughing fit.  It's difficult to imagine having to bury your child one day.  And it's even more unbelievable to accept that not only does ONE of your children have cystic fibrosis, but TWO of them do.

We are hopeful that a cure is on the horizon - and Alyssa is a vibrant, amazing 6 year old who should grow up to be a teacher in the power of positive thinking. She impresses us and amazes us each and every day.

Written by Noelle and Alyssa's mom in April 2009
Here is the listing of the patterns that
are being stitched for Noelle and Alyssa!
 
Noelle's Pattern Listing
Alyssa's Pattern Listing
Thank you to all who have signed up to stitch for Noelle and Alyssa.  Keep watching the main 2009 page for a link to the scan of the quilt after it is finished!
Click to go back to the 2009 page!