Feeding Therapy

On Monday we had our first feeding therapy appt.  We will be going every Mon and Wed at 9:30.  It will consist of an appt with Occupational Therapy (OT) then with Speech Therapy (ST).  The OT, Ashley, tested Avery a bit further and got to know Avery for the first appt.  She definitely saw some sensory issues.  Avery does not like smelling food.  She also does not like touching pudding type consistencies.  Then we went to ST where we met Poko. Poko will be the one that does the feeding therapy. Ashley basically preps Avery to eat then Poko implements it.  So the feeding therapy is much different than what I expected.  Avery will be in a room with Poko where I will be behind a two way mirror observing.  Avery sits in a highchair type seat in front of the TV and toys.  I was always taught to keep the stimulation away....  Anyways she will be timed for 25 minutes.  When the timer goes off the feeding therapy is done.  That way the timer is the control.  Not Avery.  They will feed her two 'preferred' bites then one 'non-preferred' bite.  Preferred is in Avery's preferred foods.  Poko started with yogurt for preferred and pureed peaches as nonpreferred.  The first non preferred bite she just dipped the spoon in the bowl so Avery could taste.  Then as she went on she gave bigger bites of non preferred.  It went very smoothly.  Avery did cringe the first few bites but got better.  This was pretty easy as they only did a short session of 10 minutes to introduce Avery into the program.  Now I will mention that if Avery refuses the non-preferred bite then they do not go forward with anything else.  She cannot have a preferred bite.  They also start taking away TV and toys.  So IF she says 'no' in the first 5 minutes of the timed session and throws a fit, Poko just sits there and reinforces the non-preferred bite for the next 20 minutes.  OMG...we could have some VERY long sessions.  But there goal is to ween Avery off of the feeding tube.  I also touched on the subject of her possibly having EE.  They said they see issues with that all of the time and we can work through it.  Also if her diet changes they will bring in the dietician right away to help me.  Because honestly, that scares me.  We will deal with it, as we always do, but wow. 

Our next appt is tomorrow.  I will let you know how it goes! 

Thanks for all of the love and support! 

Tune in!

Rebecca Dixon is a fellow CF mom and friend that will be on Good Morning Texas this morning at 9am on channel 8.  Rob McCollum is the host and will be our emcee at Great Strides.  Tune in or DVR it!!

Gastro appt

So...we went to our Gastro Dr today.  I thought for just a little check up.  Well.  No.  I will give you a very abbreviated version.  There is a possibility that Avery's feeding issues could be Esophogial Esophogitis.  (Don't check my spelling on that one, because your guess is as good as mine.  I would look it up on the internet, but I have learned my lesson long ago about researching medical information.)  So we are doing a endoscope the first week of May to see if she has this.  What I do know is that basically she might have a food allergy.  If that is the case we could be VERY limited on what we can feed Avery.  So you are thinking no big deal, right?  NO.  She has Cystic Fibrosis.  She needs calories.  If I am not allowed to feed her dairy, eggs, wheat, gluten, beef...what am I going to do for calories?  So I am not going to stress out.  I will wait for the results and we will deal with it when it comes.  So if you would like to say a little prayer right now for no 'EE" (so I don't have to spell it again) that would be great. 

Drum roll please......

The final amount of money we will made last night after expenses......is.......awesome.......fantastic......great.....amazing.....is.....is.....

$17,000

Thank you to everyone that helped get us there.  Thank you for coming last night.  Thank you for supporting us.  Thank you for being our friends.  Thank you for being our family.  THANK YOU!! 


WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

$20,000!!!

We have brought in over $20,000 in items for Saturday's night auction.  I had even more items come in today!!!!!!!!!!!!!  It is going to be a great evening!

And the auction items are....

As promised here is a list of items up for auction on Saturday:

Auction Items

Entertainment

Allen Night Away:  1 night stay in king room, Patrizios gift cert

Arthur Murray: Gift Certificate:  practice parties

Blue Mesa Grill:  Sunday brunch for 2

Date Night Out:  Bob's $100 Gift Card and 2 tickets to Thurs or Fri Texas Instruments Classical Concert

Date night:  Cheesecake Factory and Dallas Improv for 2

Date night:  Half Shells and Dallas Improv for 2

Family Night Out:  2 Cinemark Movie passes, $100 Chili’s, candy

Fancy Movie Night:  2 tickets to Gold Class Cinema, $100 PF Changs Certificate, candy

Frisco Night Out:  4 tickets to FC Dallas, 4 VIP passes to Babes Chicken

Movie Night Basket: movie, candy, popcorn
Date Night in Basket:  Wine, wine glasses, pizza kit, candy

On the Rail:  2 tickets to Grapevine Vintage Railroad, 4 tickets to Billy Bobs

Purple Cow:  Dinner for 4

Red Hot and Blue(2):  3 sauces and a pass for 2

Richardson Bike Mart: bike rental for 2 

Splitsville:  2 lanes for up to 16 people and shoe rental

Times Ten Cellars:  Wine tasting for 10 people

Home

Adorn Body and Home:  1 hour home consult for interior design

Artwork:  Floral Painting

Artwork: Dallas Skyline

Birdhouses and seed:  3 birdhouses and seed

Handmade Pot Holders (3 sets)

Swarovski Crystal Bear

The Elegant Door Gift Certificate

Willow House Décor

Kids

2 Graces Clothing:  Apron skirt, Bubble dress, flower tank, tank dress

 4 burp cloths

4 Wiggles Tickets to Allen Event Center

A Day on the Rail:  2 adult admissions to Grapevine Vintage Railroad & Admission for 4 to Billy Bob's

American Girl Doll:  girl of the year Kanani

Bedazzled Beach Chair and family pass to Sandy Lake Park

Buffalo Cowgirls:  Desigual Girls Tunic size 11/12

Dance Movement Summer Camp

Friedknit Creations Dress (6 mo)

Gymnastics Birthday Package:  ASI Gymnastics birthday party, Chick Fil A fruit and nugget tray, Birthday Plate, Great American Cookie Co. cookie cake

Handmade Toy Box

Horseback riding lessons:  Hertitage Hill Equestrian (1) session horseback riding lessons (6 group lessons)

House of Hatten Dress(24 mo)

Piggies & Paws:  1 hour private session which includes one print with matting

Prissy Kate Outfits:  Flower shirt, matching pants and headband(5T); Applique Shirt, matching pants and headband(5T)

Science Basket

Spanish Skoolhouse: (2) 8 session packages

Swimming Birthday Package:  Emler Swim School birthday party, Great American Cookie Co. cookie cake, birthday plate

The Kid’s Salon in Allen:  Free kids cut

Unisex Baby Basket:  Handmade blanket, Handmade burp cloths, handmade wipe container, handmade taggie, Moon onesie, Guess How Much I Love You gift set

Wine/Food

Handmade jams and salsas(2):  15 misc jars

Harry & David Basket:  Moose Munch Gift Basket

Keurig Coffee Maker

Stock Your Wine Cellar:  5 wine bottles

The Pampered Chef:  pampered chef items and 2 Central Market Cooking school

Wine Tasting:  Wine Tasting for 10 at Times Ten Cellars

Photography

Charlie Prenzi Photography:  Sitting and Creative Fee AND Fine art print package including:  1 - 11X14 fine art print;  3 - 5X7 fine art prints;  4 - 4X6 fine art prints

Jena Demler Photography:  1hour photo session

Studio One to One Photo Session:  One free session and One 16x20print & One free session and One 11x14 print

Services

Arthur Murray Dance Lessons:  4 private lessons, 2 group classes, 2 practice events

Azure Med Spa:  Laser Hair Removal: 2 treatments Underarms or Partial Bikini

Beauty Oasis:  eye lash extensions, Ultimate Facial

Bella Esthetica Medical Spa:  (2) UV Photofacial Analysis with Microdermabrasion and Chemical Peel

Dr Dickey Family Dentistry:  custom bleaching trays

Get your braces on:  $500 off Orthodontic treatment at Dr Bryan Elvebak

Precision Pest Management:  1 year of services and assorted items

Princeton Review SAT or ACT Course

Rand Dentistry:  $100 Gift Card, Kids Sonic Care Toothbrush, Bunny, Toothpaste, Toothbrush, Gum, Bubbles

Spa Esoteric Gift Basket:  $100 gift cert for any service plus asst items

Sports Clips:  season ticket which is 6 MVP haircuts

The Lash Lounge:  Lash and Brow Tint package with Lashtabs

Transformation Boot Camp:  1 free month

Vickers Kempf PLLC:  $300 towards estate planning services

Sports

US Taekwondo Academy:  10 VIP passes (2 weeks free and uniform)

Allen Wranglers:  4 tickets against Wichita

Chase Oaks Golf Basket:  4-some with cart; golf shirt; assorted items

Dallas Vigilantes(4):  5 tickets with parking pass

Your Football Network:  2 football Camps

Roger Staubach autographed football

Rough Riders: hat, cap, ball

Stonebridge Ranch Country Club:  One round of golf for 4

Top Golf:  5 lifetime playing cards

TPC Craig Ranch:  One round of golf for 4

Women

Buffalo Cowgirls necklace

Eiseman Jewels:  $500 gift certificate

Gioia Hairdressing:  $100 gift certificate

Handmade necklace and earrings by Kelly Radebaugh

Indulgence Basket:  $100 Image Nations Salon, wine, $50 See’s Candy, Vase, Premiere Designs Jewelry:  earrings and necklace

KJ Presley Designs:  Necklace, earrings, bracelet made from Red Coral, White Mosaic Magnesite, Purple Chrysocolla, & Hematite

Premier Design Jewelry:  Necklace and matching earrings, necklace

Shop Jane:  jeans

Vera Bradley:  Baroque Miller Bag and Large Cosmetic Bag

Men

Suunto Watch

The Boadroom:  Benchmark Hair Service & assort products

Misc

A Real Bookstore:  3 faith based books

Dr Pepper Commemorative Box

Dr Pepper Cooler

Handmade Andirondak Chair

Havana Jims Cigars

So close, but not close enough...

We attended CFIT yesterday.  CFIT is an annual conference for Dallas and Ft Worth CF families to come and learn new research, talk with vendors (med supply/pharm reps etc), learn about vital information about this disease.  This was the second year for me to go.  It is a great opportunity to also meet new CF families and get to see my CF friends.  As you know we don't get to see each other very often as our kids cannot be within three feet of each other.  So I got to catch up with my friends and also got some great contacts for sponsors for the Great Strides walk.  I also got to speak about Great Strides to the conference and why I am involved with the CFF. 

During the first segment I got a punch in the stomach though.  A doctor was talking about when patients culture different bugs and when they occur in patients.  She mentioned that less than 30% of CF patients colonize pseudomonas younger than 6 years old.  And those patients tend to decline in health more rapidly.  Then not but a minute later she said that girls also have a harder time with this.  Here I am thinking OH S#*T, she is basically talking about AVERY.  I was about to have a pity party for myself and zone out when the CF mom to my left put her hand on my hand and whispered, "That is not Avery, these are just statistics, ignore it."  I cannot tell you how much those few words helped me.  It was comforting to know I had someone that knew exactly what I was thinking. Sad us CF moms cannot get together more often.  We know what the other moms are going through. 

Overall the conference was great!  I also got to hand out flyers for Picture This Cure. So I am hoping to see some other CF families there. 

It is less than a week away!  I will post on Tues or Wed the items up for auction.  We hope to see you there.  Invite your friends and family.  It should be a beautiful evening. 

Beautiful Weather

Looking at the 10 day forecast it looks like we are going to have beautiful weather on the 16th!  This year we have more items outside on the patio so we can enjoy the weather. 

Yesterday there was a big announcement in our CF world.  The CFF is working with a pharma co to bring us a new drug that will possibly help AVERY!  Avery genetic mutations in CF are DeltaF508 and G542x.  DeltaF508 is the most common in CF patients.  This drug will target DeltaF508 and correct the base defect.  This could change our lives.

This is why we fundraise.  This is why I work so hard to raise money.  I want this drug for Avery.  I want our lives to be different....better.  It takes a lot of money to get this drug to market.  The government doesn't pay for it.  We do, the friends and families of those we love who have this disease.  So I will get off my soap box now and copy the article below. 

April 7, 2011
Today the Cystic Fibrosis Foundation announced the expansion of its collaboration with Vertex Pharmaceuticals for the discovery and development of additional drugs aimed at treating the underlying cause of cystic fibrosis.
The new program will support development of a potential new drug called VX-661, designed to treat people with the most common genetic defect in CF, the Delta F508 mutation. Nearly 90 percent of people with CF in the United States have at least one copy of this mutation. 
VX-661 is known as a “corrector” and aims to move the defective CF protein to its proper place at the cell surface. Another corrector, known as VX-809, is already in clinical trials. By developing multiple correctors, the Foundation increases the chances of bringing new therapies to the CF community as quickly as possible.
“This new agreement will further leverage the successful collaboration with Vertex to accelerate the discovery and development of new drugs to treat a wide variety of CF patients,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “Given the recent announcement of promising data of other compounds in the CF pipeline, we’re optimistic that the CF Foundation is on the right path to fundamentally change the treatment of CF by targeting the cause of the disease.”
The Foundation’s investment, which will be up to $75 million over five years, will also expedite the discovery and early development of other new correctors.
“The CF Foundation is widely recognized by doctors, nurses, scientists and those with CF as a driving force in the search for new CF medicines, and we are pleased to further expand our strong collaboration with them,” said Matthew Emmens, chairman, president and chief executive officer of Vertex. “The collaboration announced today underscores our commitment to CF and accelerates our efforts to develop new medicines as quickly as possible for people with the most common type of this disease.”
With the Foundation’s expanded support, Vertex plans to begin a Phase 2 study of VX-661 by the end of 2011 and expects to enroll people with CF who have the Delta F508 mutation.
A Phase 2 clinical trial is underway to test combinations of VX-770 and VX-809 in individuals with two copies of Delta F508 mutation. Data from the first part of this trial is expected in the middle of 2011.

Avery is famous!

The Dallas Chapter posted on their website:  http://www.cff.org/Chapters/netx/ChapterEvents/volunteerevents.cfm

Pretty Cool!!

10 days and counting...

Whew, what a busy day of picking up donations!  Rand Dentistry at the Village at Allen donated a cool basket with a kids Sonicare Toothbrush, gift card, and goodies.  I picked up some cute dresses from the Geismars.  The Rough Riders donated some merchandise.  I got word we are going to have a $600 watch given to the auction this weekend.  Things are looking good!  By the time all the stuff comes in I think we are going to have close to $16K worth of goods! 

11 days

Wow!  We are 11 days away from our second annual Picture This Cure.  I cannot believe another year has gone by.  Mike and I are very excited to see our family and friends gather to support a cause so dear to our hearts.  This year we formed a committtee to help us out on the auction.  We have so many great items that came from them working hard.  We have an American Girl Doll, an SAT Course ($1000 value), US Taekwondo packages, Flower arrangements by the Flower Pot, cute outfits from Prissy Kate, Top Golf gift certificates, Golf packages, photo packages, Havana Jims Cigars, Wine, a $500 gift card to Eiseman Jewels, Med Spa packages, Salon packages, and the list goes on and on. 

We hope you can make it to the auction and share a drink with us in support of a great cause, Avery.