Hooray! Hooray!

Hooray!  Hooray!  We go home TOMORROW!  I want to point out that Mike and I are very excited to go home.  Avery....not so much.  She says she does not want to leave the hocibal and wants to bring it home with her.  I tried to explain to her we cannot bring the hocibal home with us, but she doesn't understand.  She has said she wants to have a TV in her room like she does here (not happening). 

To rewind, we had a  rough morning on Friday with a poke and then changing her bandaging on her PICC line.  Once that was done we were okay.  Daddy came and has been with us since Friday night.  Uncle Jake, Jackson, and Auntie Cayee came to see us yesterday morning.  We went around the hocibal for a full tour.  Avery and Jackson had a great time playing at the indoor playground here.  Last night our sweet neighbor, Suzanne, brought us dinner.  We enjoyed having FRESH fruit and vegetables.  The canned fruit they have downstairs just gets old after awhile:)  This morning we are in good spirits and cannot wait to be discharged tomorrow!

Not much to say...

There is not much to say except Avery is having a great time.  She said she doesn't want to leave the hocibal!  She rides her bike through the halls like she owns the place.  The Ft worth zoo came and brought animals the other day.  Avery wouldn't pet the alligator, but had no problem with the snake.  They brought two penquins that ran around a bit.  We also got to play drums with a local muscian.  Avery's Nonie came in to surprise her yesterday.  Nonie stayed overnight so I could go home for a break.  I actually didn't sleep very well...my mind was at the hocibal.  Nonie left this morning and Avery was bummed.  But shortly after she left Julie came with Zoe and Lucy to do a bit of Smithey Science School.  She did two really cute germ activities.  Avery took them on a tour of the hocibal and loved every minute of their visit.  Tomorrow there are some craft activities. 

We will get out on MONDAY...YAY!  I can see the finish line!  We should get out early afternoon.  Here are a few reasons it will be good to be home:

1.  Hot Showers
2.  Making my own food, how and when I want it
3.  Not waiting on a nurse to get meds for us
4.  Not being a germ-a-phobe (or just not as much)
5.  No more POKES

Avery will miss:

1.  riding around EVERYWHERE on a trike
2.  My complete FULL attention
3.  presents that come with every visit...really guys if you visit she is just excited to have you here.  You do not have to buy her anything. 
4.  Rainbow popsicles...she LOVES them
5.  The performances (and I will miss them too!)

Happy...what day is it....Tuesday?

We are having a lot of fun here at the hocibal.  Yesterday we saw an elementary school choir perform.  In the afternoon we got to pet dogs.  Avery even got to brush one of them!  Last night a friend, Cheryl, brought her uncle Joe to help us decorate our room.  We now have a beautiful princess tree in our room!!!  He is so talented!  I could have never done what he did to this tree!!  Thank you so much for coming Joe and Cheryl.  It meant a lot to us. 

We are excited for a new day of activities and fun.  Today the Ft Worth Zoo is coming along with Mrs.  Tami!!  Yay!!  I need to go as we need to go ride our bike!

Ok...NOW we are settled in.

Last night we had the PICC line placed.  It didn't go as smoothly as we had hoped, but it is in.  Avery had two blood draws this morning and so we had a rough morning. 

Since she had such a rough couple of days we took her to Build a Bear and Jingle Bear was born.  Daddy rigged her tricycle with the box and now Jingle Bear goes where Avery goes.  They even did vitals on Jingle Bear tonight and she is doing very well, although her blood pressure is 0 over 0.

We got to see an orchestra play downstairs with beautiful Christmas music.  They let a little boy be the conductor at the end.  He was so weak that the conductor had to move his arm for him.  Tears. 

Nanie came today and helped Avery make a Christmas chain for her room.  Avery's face when Nanie came in was a breath of fresh air. 

After peaking in other rooms we are sadly behind on Christmas decorations.  We are going to step up our crafts to make it more homey.   So that will be our goal the next few days. 

We are doing shaky puff-puffs for the last time today and then lights off for bed.  We are going to bed in good spirits.  Thank you for all of the prayers and sweet words.  It lifts us up.

poop

Avery went in for a PICC line and came out with an IV in her leg.  They were unable to get a PICC line inserted and left the IV in her leg.  She woke up a VERY unhappy little lady.  A wonderful smooth day at the hospital is ruined.  She has finally calmed down with some tlc from mommy and daddy.  We will try for another PICC line (they will use a sonogram to help this time) tomorrow.  That will allow her to be active and happy. 

We have respitory coming now...got to go.

Settled in

We are in our room, unpacked, and waiting on anethesia for a PICC line. Avery gets very upset for each new person entering the room. She asks if she is going to get a shot. It takes a few minutes to convince her and then the tears finally stop. Word just came that she is scheduled for the PICC line at 5pm.

We are looking forward to a visit from Santa tomorrow as well as fireworks! The Dallas Cowboys came on Monday, but I heard the Rangers might be coming soon. There should be a lot of fun things to do. Once we get past the PICC line we are smooth sailing.

Funny storry: They have a Build a Bear shop as you walk to registration (very well planted Cooks). Avery was tired and grumpy so she threw a huge fit about not going to Build a Bear. As we are walking to her room she is crying and carrying on. The hallway is super busy (hospital is at full capacity) and people are passing by saying how cute she was and poor baby....this is as I am hauling our luggage and I have a crying three year old. They probably thought she was upset to be at the hospital..but no, she just didn't get her WAY. I wanted to correct her and tell her she was about to go to time out, but I would have looked like the most inconsiderate parent in the world. Yep that was MY THREE YEAR OLD.

We are packed...

Avery's cough isn't better...and is getting worse.  After talking with Mike, another CF mom (thank you Rebecca!) and much internal debate I called the CF clinic to let them know Avery's cough is getting worse and we are ready for a "tune up" if he thinks it is necessary.  We are scheduled tomorrow to see him at 9:30.  They asked us to pack our bags in case. 

If we are admitted we will be in for 10 days.  There will be a lot fun activities and performances at Cooks, so we will have fun with it.  Avery is excited and she is making sure she can bring all of her favorite things. 

Are we better?

Yesterday I called to let the dr know Avery was much better.  So we cancelled today's appointment.  Avery got to go to a make up ballet class.  She always has a great time dancing and was so excited to get out of the house.  On the way home she started sounding hoarse and coughy.  When we got home she sat on the couch and fell asleep.   She slept for a good three hours and woke up still hoarse. 

I called the dr and he wasn't too happy that I took her out in this weather.   He wants us to stay indoors and minimize activity.  So before we were staying home bound by choice, now it is official.  The rest of the week we will be indoors.  Yay. 

Good news is we are still not in the hospital for a tune up!!!

Much Better

Avery is doing much better!  Her cough is mainly in the morning and at night.  Also when she starts running and dancing around!  We are still keeping her home to make sure the weather doesn't cause a change in her coughing.  And I am trying to get her to rest....but the steroids are not helping me with that.  She has a lot of energy to burn....she keeps asking for friends to come over and play with her.  Poor baby!  As soon as we are in the clear, we are going to have a lot of playdates.

Small steps

Last night Avery was not looking so good.  Her eyes were glassy and red rimmed.  She was coughing so much that she was whining that it hurt.  I told Mike if she was still like that in the morning I was going to to call the dr and we would be admitted.  She surprisingly slept pretty well.  She has been up for an hour this morning and looks so much better!  She has coughed a handful of times, but no whining.  I am very hopeful the steroids have started working and are giving her body that push it needs. 

Thank you to everyone for their kind words and prayers.  This can be very scary for us and it is nice to know we have a great support system. 

Our Visit

Our Dr C was okay. Avery weighs the same amount as she did two months ago. Not bad...but not good.

He was more worried about her cough. He gave us the choice of hospital stay now or wait another week to see if some steroids would clear it up. I went with the second option. So steroids start (as soon as she wakes from her nap) and our TOBI treatments start. We have until Tuesday (our follow up appt) to get this nipped in the bud. We are hunkered down at Casa Gray and will be cancelling any and all engagements as to focus on Avery's health.

A hospital stay would be very unfortunate. This is such a fun time of year with parties, decor, and cheer. But if we do have to go in the hospital we will make the best of it. And I bet Cooks has some great programs for the kids during this time of year. We will keep everyone updated.

Clinic Visit

It has been a long time since my last journal entry. This is always a good thing...that means no issues.
We are headed to Cooks today for Avery's big yearly check up. She gets a chest x-ray, blood work, and a pulmonary function test (when she gets older). I am a bit nervous about today's visit. Avery started a cough on Saturday and it doesn't sound good. We have increased treatments to 3x a day and it is not doing better. She had a rough night's sleep tossing and turning. She doesn't have a fever so that is good.  We shall see.

Mike and I also made the decision to stop pumping her with formula. The reason being that we want her little body to tell her when she is hungry. She has had her feeding tube since she was 10 months old. We thought maybe this was a leading cause into her not eating enough. We have seen a little improvement, but my gut tells me the CF clinic will say it is not enough and ask us to start pumping again.

Avery is so excited for Santa, but she does say, "I am a little shy to Santa." Meaning, don't put me on that guys lap again. Every year she throws a fit, yet we keep going back! We are such mean parents!

Hopefully today is uneventful and we won't post again....

Appt

We had our appt this morning with Dr Pfaff.  He was pretty funny and entertaining!  He asked a ton of questions and went through a questionnaire to determine if she was experiencing a pulmonary exasperation. She is still coughing but over this weekend she was doing better.  She also gained weight and has no fever.  So yes, the cough has lasted a month, but he does not suggest to admit her...sigh of relief.  He did say if she got worse we would have to do a tune up in the hospital.  I have to call on Thursday to inform them on her health.  My gut tells me we will be fine. 

I know I keep referring to my 'gut' on things, but I am quickly finding there is not a lot of black and white with CF.  It is not like she cultures strep and you put her on antibiotics to treat it.  It is a bunch of damn GRAY area.  It is a bit frustrating to navigate this disease.  It is a bunch of hunches and gut feelings that tell you if your kid is sick.  Then what do you do, do you call the dr, do you push for an appt, do you describe her cough well enough so they understand what it is like, do you tell them she had irregular bowel movements yesterday but not the day before, do you tell them her stomach hurt this morning but not now, do you tell them she slept over three hours on Wednesday for her nap, do you tell them that she has been burping a lot lately, do you tell them that you accidentally gave her yogurt one hour after you gave her the CRAPPY cipro they prescribed......oops...I could go on and on...but I won't :) 

Anyways this disease is frustrating at times.  It is times like these I remember there HAS to be a cure around the corner. 

On a very positive note and happy note, we went to the Sea Life Aquarium after the dr appt.  Avery LOVED it.  She was so excited to see all of the fish and I was surprised she could name so many of them.  I guess she is retaining some things we talk about!  We also walked around Grapevine Mills Mall and had lunch together.  I think I was feeling guilty that I drug her over to a dr appt she didn't really need:) 

Over reacting

On Friday Avery's cough seemed to get worse.  I called Cooks and said I would like to be seen.  Our Dr was out until Wednesday and couldn't see us till then.  I argued and now we have an appt with a different dr this morning.  Avery is up and doing her shaky puff-puffs before we make the drive.  Since Friday she seems to be better.  I think I over reacted on Friday to make this appt.  But I guess it is better to be safe than sorry?  I know a lot of you think I know all there is to know about Cystic Fibrosis.  But really I don't.  I learn as I go.  This cough has lingered so long...is this normal for CF or should I be worried?  Don't know.  I always lean towards the worrying side (I think it runs in the family;) ) 

We will let you know how the appt goes. I think we will be fine. 

Thoughts

We are in our second day of steroids.  I can tell Avery just wants to jump out of her skin.  She is always moving as it is and you add the steroids and she is out of control.  I am trying to be as understanding as I can while she is on this medicine, but it does test my patience at times.  The next few days while on this med we are going to try and keep her extra busy.  On a VERY positive note she is hungry all the time.  I love hearing the words, "Mommy, I hungy now." 

Her cough is better.  I am soooo hopeful we can kick her cough with this round of steroids.  We just have to.  Can you believe hand, foot, mouth has put us on this path of Cipro and two rounds of steroids?  It makes me so scared of the common cold.  Just as we were getting comfortable with CF and feeling like we can deal with it....we get hit with hand, foot, mouth. 

I am very disappointed Avery cannot attend mothers day out.  I was looking forward for her to have new experiences.  She is such a social little girl.  Hearing our friends all going back to mdo and we are left behind is another slap in the face that this disease has changed our lives.  If you can believe it makes me even more dedicated to getting the new drugs to my Avery.  SHE deserves to have all the things (even the little things) that a healthy child gets to have and do. 

Those are my thoughts on for tonight...

Roid Rage

Avery's cough was better until we stopped the steroids. It flared up again. The dr has put her on another round of steroids. (Which means my sweet little Avery turns into a raging three year old:(  If this doesn't do it then we have to go into clinic to decide what to do. My gut is telling me the next rounds of steroids should do its trick. I hope my gut is right...

On a CF note we have a dear friend, Violet, that is 6 years old and in the hospital again. This time with pneumonia. This poor little girl has been through a lot in the last year. She has been in and out of the hospital fighting CF. Please keep her in your prayers for a quick recovery.

Cough update

Avery's cough is seeming to get worse. We have until tomorrow for it to be better. If not, we will go and see Dr C at Cooks. I am praying her cough gets better. I am afraid we might have a hospital stay if it doesn't. I hope I am worrying for nothing. 

Feeding Therapy and Cough

Things at the Gray household have been status quo for awhile now.  Avery has attended a princess dance camp and a summer/beach themed camp this summer.  She has been doing very well.  All the while we have been attending feeding therapy.  On Monday our feeding therapist pulled me aside and said she thinks Avery needs to do inpatient therapy.  We have been on a waiting list for some time now, but had hoped the outpatient therapy would do the trick.  Unfortunately that is not the case.  Tenatively our admission will be September 21st for 4 weeks at Our Childrens House at Baylor.  I have been told we can have visitors and will welcome you with open arms to help us break up our stay of 4weeks:)  It will be a long and tough process but are very hopeful this will help Avery in the long term.

On another note, Avery was diagnosed last week with hand, foot, mouth disease.   On Saturday she started coughing.  I called the dr on Monday and they have put her on Cipro.  She has one more day to kick the cough (or needs to be better) by tomorrow or we go on steroids.  This was a bit of kick in the gut for me.  I thought the only illnesses I needed to worry about are respitory ones.  I was wrong.  We have to worry about all bugs as they will disrupt her immune system.  Then the psuedomonas bugs become alive and multiply creating extra mucuous and coughing.  I feel a little ignorant that I didn't know this. 

So this all happened on Monday.  Then I got a reminder email that tuition was due for Avery's new mothers day out program.  I put the check in the mailbox, went inside, and then asked myself is it worth Avery going to mothers day out?  Mike and I decided it would be best to wait a little longer before we introduce her to school.  We are opening her up to a lot of illnesses that will only create damage to her airways.  I am however going to look into an art class, ballet, or anything that will give her some socialization without the risk of her getting sick. 

So that has been our week!

Coughing.

Avery has been battling a cough for a couple of weeks now.  We increased her shakies/puff puffs.  They put her on the dreaded Cipro and now have put her on steroids.  She has 5 days to kick the cough....not sure what they do after that.  We did have a check up at clinic on Tuesday.  She is still in the 50th percentile, so that is very good.  She had a throat culture and should get the results of that in a few days. 

We had feeding therapy yesterday.  I prepared some (very yummy if I might add) mashed potatatoes.  I put a whole stick of butter and whole milk in them!  She did not like them.  We are going to try again on Monday.  We shall see.

I will keep you updated on the cough. 

Thank you!

Well where should I start?  Maybe I should start with the fact that the Dallas Great Strides walk had the most successful year to date.  We raised a whopping $360,000 for the Cystic Fibrosis Foundation!!  That is more than $120K more than last year.  We had over 1300 people show up.  We ran out of tshirts, bands, ice, water and it was great!  We have outgrown our location and will be looking at other areas to move the walk.  Team Air for Avery got 4th place raising more than $32,000!  WOW!  Our team worked so hard to raise that amount and Mike, Avery and I appreciate all you did to help us.  Thank you!!  Thank you!! Thank you!!  We love you all so much and cannot believe you step up the plate for us year in and year out.  Thank you.

Dallas Morning News

Avery and I are on the cover of the Neighbors Go section of the Dallas Morning News today.  Check it out!

We are home

Avery is home and is relaxing and watching her favorite show...Caillou.  I am afraid I have a lot of Caillou to watch today:(  Dr Russo (Avery's GI dr) said her stomach and esophagus look great and didn't see any irritation.  He doesn't think she has Esophogial Esophagitis (EE).  He is running her biopsies and will have a 100% answer in 7 days.  I think it is a safe bet we are fine, but I am glad he is still running the biopsies.  This basically means there is nothing prohibiting Avery from eating.  So her eating issues are all behavioral.   I am glad we ruled this issue out and now we can focus on her feeding therapy. 

Before we know it Avery is going to be eating full meals and eating more than her 25 foods she will eat now.  Thanks for the thoughts and prayers for no EE.  They were answered!!

Tomorrow is the big day

Tomorrow we go in for Avery's endoscope at 7:15am.  I am so very happy we are scheduled so early.  Avery won't be hungry and grumpy....we maybe grumpy it being so early. So wish us luck!  No EE!

Just an update on feeding therapy.  Avery is doing well.  I watch her eat with Poko through a double sided window.  She has eaten some pretty safe stuff...peaches and apples pureed.  I don't know when they will advance her on to some more difficult stuff.  I am liking the set up and it seems like Avery is eating more at home. (Is that really what is happening? It is probably wishful thinking that it will be that easy!)  The occupational therapy has thrown me for a loop doing some activities to work on her 'seek sensory' issue.  I thought we would be working all with foods to get her ready to eat, but no.  They have been doing some balancing and rolling cart stuff.  I asked to sit down with her next appointment to figure out the purpose of these exercises.  I just don't want anything to be a waste of time...for anyone!   

We have our last meeting for Great Strides tonight!  Just three weeks away! 

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. 

First Post

This article ran in our neighborhood newspaper.  I thought it was perfect for my first post. 

My name is Abby Gray and I have a daughter with Cystic Fibrosis.  Lately, I feel like that is what defines me.  If you asked me 3 years ago what defined me it would have been my job or my husband or my love for cooking.  But now, fighting this disease  is my drive, my focus and my all.  Because my daughter is my ALL. 

The worse day of my life was the day of the diagnosis.  It was February 29^th, 2008 at 9:10 am.  Avery and I were in my bed.  She was a month old and the most precious thing I had ever seen.  I was feeding her in my lap with pillows propped up.  I was so exhausted, but overjoyed at this little lump I was looking at.  Then I got the phone call.  My pediatrician, Dr Padrez let me know Avery’s sweat test came back positive.  I was shocked. We had a sweat test the day before, but I knew the odds. It was likely she would NOT have CF. I clicked off the phone and held Avery to my chest and yelled.  I yelled a guttural cry I didn’t even know I could make.  I thought my days with Avery were limited.  I couldn’t believe God could put her in my life just to take her away so fast.  I still feel bad to this day that in her first month of life she had to witness me that way.  I only hope she doesn’t hold onto any anxiety because of it.  My husband came home, fast.  We cried and cried.  Her first year of life was a blur of dealing with a newborn, a chronic illness, and the strain of learning about CF and what that might mean for our daughter’s future (or something like that).

Avery is now 3 years old and is feisty and loud and just an overall joy.  She smiles all the time, and everyone comments that she is one of the happiest kids they know. She loves puzzles and can be found in the living room with a Super Why or a Disney Princess puzzle.  She plays on a neighborhood soccer team, Pinkalicious, has dress up play dates, and goes to gymnastics.  That is her normal life.  Her CF life consists of twice a day rounds of nebulizers, twice a day “shakey vest” that vibrates her lungs, lots of medicine, and supplementing her meals through the feeding tube in her stomach.  Avery has to take 6 pills before she eats a meal to help her digest her food.  This is all to keep her healthy.  When she is sick she has to do four times a day nebulizers and shakey vests.  Avery caught a cold in November as was hospitalized for 10 days.  It was a long stay, but something we will have to get used to. While treatments, medicine, food take up hours of very day, we try not to let CF crowd her normal life.

The thought of losing Avery is something I try not to dwell on.  There are many new therapies and drugs coming out.  There was positive news announced on February 23^rd that a new drug has relieved symptoms in CF patients with a certain mutation.  Although Avery does not have that certain mutation, we are hopeful that soon there will be  drugs to target her mutations.  My friend at the CF Foundation (CFF) said this was the biggest news in the last 15 years of this disease!  The foundation is the reason we have hope for our daughter to go to college, to get married one day, have kids of her own, grow old and gray.  The CFF funds most if not all of the new drugs that are for CF patients.   They also fund CF Centers where we receive our care.  We feel it is our responsibility to give back to CFF, because they are helping our daughter. 

We are hosting our second annual Picture This Cure benefiting the Cystic Fibrosis Foundation on April 16^th from 7-11pm at the Star Creek Clubhouse (2110 Starcreek Pkwy, Allen, TX 75013).   The evening will feature a silent auction, wine, appetizers, and entertainment.  Last year we had a great time meeting new people and doing it for a good cause.  We raised over $7000 last year for CFF and hope to surpass that this year.  It is free to come and the dress is black, white, or red casual.  We would love for you to come!