Results

The results are in.....Autumn Faith is CF FREE!! As her dad would say Ayla is our miracle and now we have our Grace baby!
We believed that God would hear our prayers and he has heard us and honored our Faith in him.  We couldn't be more blessed this holiday season.
We know that in his perfect time our Ayla will be "free of CF" as well!
Merry Christmas!

Cayston Delivery

So yesterday I got a delivery from the UPS man.....he brought one large box containing the above items. This is the Altera System by PARI and the nebulizer (which I will show you below), a dvd from the CFF showing recommended cleaning, ziploc containers (I later found out were part of the cleaning process), and a NUK baby bottle sterilizer.  I was overwhelmed when I saw all of this stuff.  I immediately thought....."This stuff is serious"

I went outside and saw another package.  It was a cooler box (which I am used to seeing b/c that's what all of Ayla's monthly medications come in) I opened it up and saw this:

This is the Cayston medication.  This stuff is crazy expensive like $6000.00 per month and I have to say I can tell by the packaging!  I really like how they have it labeled for you so on those days where the 10+ treatments are all running together, it's plain as day how many Cayston treatments you have done.  Very, Very Cool!

This is the nebulizer that is used with the Altera compressor (I will show you below).  It has 5 parts...yes 5!  They all have to be cleaned and sterilized as follows after each use:

1. Wash Hands
2. Rinse each piece under warm water for 10 seconds
3. Put a small amount of regular dish soap (not white or antibacterial) into ziploc container
4. Put neb set into with warm water and put lid on and swish around
5. Rinse
6. Put into NUK sterilizer for 8 minutes
7. Air Dry

This little guy is pretty complicated.....but it is really cool the way it all works together.

This thing is pretty cool.  It runs off batteries or can be plugged into an outlet.  It makes absolutely no noise (which we love) we are always fighting to hear whatever movie or game Ayla is watching/playing while doing her treatments.  The best part is it runs for about 3 minutes and needs to be given 3 times a day.  Ayla says it tastes like "berry-blast ring pops" and she says she likes to do it.  She is such a little trooper.

This is what it all looks like when your ready to do the treatment (not my pic).  My hands are going to be so dry after all the washing I do.  I stand at the sink and wash nebs for at least 20 minutes a day.  We are hoping this treatment does it's job and keeps the Pseudomonas away for good!

Ayla Update: Culture Results

On the way to my Dr. appointment this morning I got the most wonderful news!!

Can you guess what that was????

The nurse said she grew normal flora only!!! I was planning on calling today and when she called me I was like uh-oh!! But it turned out to be the best news ever!  With these results we avoided a picc-line, IV med schedules and missing school.  

We are still starting Cayston to fully eradicate this bug and make sure we get consecutive clear cultures.....but I am so thankful that this cold is just a cold.  

I know we have had a lot of people praying for our family and we so appreciate it!  We know that God has taken care of Ayla yet again....we are thankful to him for keeping Ayla in the palm of his hand.

Ayla Update: Dr. Appt

I spoke with the CF center Monday and they wanted me to increase treatments and bring her in today for a check up and throat culture.
We got there for an early appointment and her Dr. came in and stayed in the room with us for about an hour.  I have been impressed with the time she puts in with Ayla at each visit.
I called them because Ayla had been coughing at night for the last 3 nights and explained to her that she has had a cough/cold on and off since school started :(

How did I know this would happen......

Her Dr. said it didn't seem like school liked her much.....and that we would need to "wait and see" how sick she got when I mentioned I struggled with the decision to put her into school.  And now having seen how much she loves it I will be really upset if I have to take her out.

She listened to her and said she heard a lot of crackles going on in her lungs, and we need to get rid of them.  She told me what her plan would be if the throat culture came back showing Psuedomonas or something else....which is going to be IVAnti-biotics.  She asked me if I were comfortable doing those at home (which I said yes to..anything to avoid the hospital) but that she would have to come in for a PICC Line (central line).  And then be on meds intravenously for 2 weeks.  She also wants to start her on a new cycle of meds through her nebulizer to eradicate the infection.

3 weeks of each:
Cayston      
CIPRO
off 2 weeks
TOBI
CIPRO
off 2 weeks
Cayston
CIPRO
off 2 weeks

Can I just say that I am so over Psuedomonas!  I am so over all these extra treatments, all the time that Ayla spends hooked up to machines.  I am so upset at the thought of having her on IV meds and having an IV in all the time for 2 weeks.  That means I would have to take her out of school since I am sure they would not allow her to come with a needle in her arm and even if they would I will have to be administering medication and doing treatments during the school day hours anyhow.

This will be the first time Ayla has needed a "tune up" at home or in the hospital.  I have always put a lot of stock in the fact that she has always bounced back and never required a hospital stay.

We will have to wait on culture results, I am not sure when I will hear or how long it takes to grow what it will grow.  I am hoping I know by the weekend.

I am just praying that this is just a cold and that nothing grows on her culture.  If not we will deal with it just like all the other CF families do.  Hospitals, medications and treatments are all part of CF and I will have to be okay with the fact that Ayla may not be immune to them all-all the time.

I'm feeling a little negative today, it doesn't help that I didn't sleep last night and Im 7 months pregnant with a child who could also have......No I don't like even saying the words....so I won't....I think maybe I will feel better after I get some sleep but I really don't even want to talk about it..luckily I have this blog so I don't have to.

On a good note Ayla gained a pound and grew an inch & a half since we were there a month ago!  That was a nice surprise!

So for now-we wait.......

It's Hard to Know....and It's a lot of pressure when you don't

Since having Ayla and learning of her illness I have become a Dr, Nurse and Nutritionist among other traits.  I got my education from the school's of "NICU education," "paying attention" and also from "asking around."  I have learned a lot from these but my knowledge is always questionable.

When you have a baby something inside of you changes and a certain intuition occurs for your child.  I can literally feel it in my bones when something's not right with Ayla.  But unfortunately with Cystic Fibrosis some things that would be "small potatoes" to others should be taken seriously and it's hard to know the difference.

Since I am a "stay at home mom" and primary caretaker of Ayla most of those kinds of decisions fall on me.  Not that I don't call my husband to get his take on things....but I have that intuition and most of the time the weight falls on me.

At times when a cold flares up or a consistent complaint occurs I get very stressed out.  I get worried that maybe I haven't handled this or that the way I should have.  What if this turns into that and I could have done something about it?  What if I counted on my so-called "intuition" and it fails me?

Ayla has had what most people would say is just the "normal" cold that kids pick up when starting school.  It went away and now it's back.  How long do you let something go before calling the Dr? We all know that prescriptions are given out quickly with CF to prevent illness taking over in the lungs....when should you wait and when should you allow them.  Antibiotics have their own set of disadvantages for our kids.

I just sometimes feel like I would love to just brush a cold or random complaint off my shoulder.  I would love to wear only the "mom" hat and not have all the pressures of wearing the others.  That is the card I was dealt.  When I get down about how CF affects me, I can just remember how much it affects Ayla.  I will always be here to put on a different hat each day depending on what she needs.  And when she's older I'm sure I'll wear new hats that will come along with new challenges.

I know that I can only do my best.....but it doesn't make it any less stressful when my best may not always be good enough....

The Never-ending "Poop" Saga

Ayla's BM's haven't been the greatest the past month or so.  With being on Cipro for Psuedomonas and all of her other daily meds her digestive systems is pretty much a breeding ground for bacteria.  It seems like she will have a few days of ok poops and then a few days where she will go 4-5 times a day and those could be accompanied with pain and oil.
I am just wondering if all this is "normal" for CF'ers because other than Probiotics.....there aren't many options to treat it.
You would think if Oil was present in her stools which is fat, then it would be safe to say she is not absorbing all of the fat from her diet.  And isn't that what enzymes are for?  Can you ever expect to absorb all of your fat from your diet-living with CF...even on pancreatic enzymes?
It seems like this could just be part of the battle that is living with CF...poor thing....she wants to change her panties all the time b/c she feels like something is there....I guess it's the feeling of always needing to use the bathroom that bothers her and gives her anxiety about having an accident.
It seems like there should be something else out there to help with this....I wish someone would do a study on how diet and quality of food affects people with CF.  Diet can heal the obese and even cure cancer so why is CF so different??  Maybe I should just start this study on my own.....I want much better for her than a life of worrying about what people will think if she frequents the bathroom or has constant stomach issues.....

Sleep-over's????

I was laying in bed the other night thinking about how tired I was from the day's to-do's.  I was going over all the things we CF parent's have to do to try and keep our kids healthy and more importantly...."Did I forget anything?"

My mind went to thinking about sleep-over's for Ayla and how that would look.  And would it be worth all the work that goes into actually getting her there and trying to tell a mother/grandparent all they need to know, better yet write a detailed list with all that goes into a night for Ayla.

I think this is where I drifted off to sleep because it made me so tired to think about it.....I think I need to hold a seminar at my house for each of the grandparent/mother's that will allow them to watch everything I do for a day and take their own notes for the times they may need to take over.

It's so nice to have people in Ayla's life who are willing to help when needed....Now we just need to take them all to CF-school :0)

~krista

Treating Psuedomonas and how it's going...

Ayla (4) cultured Pseudo last week for the first time in over 2.5 years.  We started another antibiotic and added another breathing treatment to our already grueling schedule to try and get rid of this.

Ayla has always been a go with the flow kid of girl when it comes to her treatments-always made me proud!  I'm so lucky to have a kid who understands without understanding the reason she has to do these things to stay....."Strong & Healthy"

This is what our day looks like:

Wake up
Breakfast
Watch TV for an hour (let food settle)
Treatment #1 Albuterol 15 mins
Treatment # 2 Hypertonic Saline 20 mins
Airway Clearance Therapy 30 mins
Treatment # 3 TOBI (treats Psuedo) 20 mins

Lunch
Daytime Meds

Playtime/Rest-time

Dinner
bath
Treatment #1 Albuterol 15 mins
Treatment #2 Hypertonic Saline 20 mins
Airway Clearance Therapy 30 mins
Treatment #3 Pulmozyme 15 mins
Treatment #4 TOBI 20 mins
Night time meds

Sleep

We have yet to get into a good routine that puts her in bed at a decent hour.  We started TOBI Saturday and since then she has been getting in bed around 10.  So the morning starts later thus continuing the same late schedule we had the day before.

I know that we will find our groove-we will be on this schedule for the majority of 3 months to try and get rid of the Psuedo- so we will have ample time.

We are going to Disney in 2 weeks so this routine is going to be made even more interesting while we are there!

Ayla enjoys to watch movies, color pictures, play barbies and play-doh while doing her treatments.  She really does have a great attitude about doing them most of the time.

~krista

Cysts in Lungs? What!!!!

Ayla's CT revealed 3 Cysts in her lungs.  When the nurse called she said the Dr. wasn't worried about them and there was no plan to treat them.  Just to watch them.

4 years old and has lung damage after only culturing psuedo one other time (other than now) in her life and no hospitalizations related to her lungs?? I just don't get it!!

The nurse said I would never have known how long these cysts have been there since she has never had a CT of her lungs before yesterday.

I called the Dr. and spoke with her directly.  I felt much better after this.  She told me that she has seen Cysts with CF & without.  That most cysts go away on their own or with treatment like she's on (rx)-she will want to do another CT in about a year.  She told me about treatment for these if they got bigger and what signs to watch for.  Knowledge is definitely power when it comes to all things related to health.

The Dr. impresses me with her kind and gentle demeanor, I was very worried and thinking about all kinds of scenarios.  She really put my mind at ease.  I told her that I felt like we had missed something just relying on chest X-rays all these years, that maybe this damage (cysts are signs of damage) could have been avoided.

She just plainly said that ALL Dr's do things differently, neither way is wrong or right. But for her she likes to really get a good picture of what's going on in the lungs.  Ayla's lungs are tricky-they always sound so clear and healthy when that may not always be the case.  And we definitely need to know about it so we can treat it!

I am just praying that these small cysts respond to treatment and go away on their own by the time we take another look.

Last week was full of CF reminders and if we can avoid it, I would like to have a normal week full of healthy reminders!

-krista

Im curious to know how many clinics rely solely on chest x-rays to view the lungs??

Update from CF clinic...culture results...

we grew

Pseudomonas

for the 2nd time EVER......ugh CF sucks

what is this? CLICK HERE

Update on Ayla

Ayla's Dr called Friday after looking over the chest x-ray and said it was "un-clear" which means they want to do a CT of the Lungs.

They are in the process of scheduling that and getting insurance approval now.  We are waiting to hear when it will be.  We have a vacation coming up in a few weeks and I am anxious about getting her on the road to being better.

As far as her demeanor, she seems mostly herself.  She is coughing still and has been coughing more while sleeping as well.  She is not congested or feverish and her cough is dry.  So I suppose that's good.  She seems to be having a little less energy the last few days of swimming has been cut short because she wanted to get out (which is unlike her).

So for now we are waiting to hear back from culture results and waiting to get CT scheduled and will wait on those results to treat.

On an upside: her GI issues have greatly improved and her BM's seem back to normal! yay!!

Dry Cough.....New Doctor

I had taken Ayla to her pediatrician last week and he heard a crackling in her lungs.  For someone who doesn't have a "cough" whenever I hear a cough (wet or dry) my mind starts going.  Some people just cough with CF and coughing is good to bring up some of those thick secretions that can get gunked up in the lungs but Ayla doesn't and so if she does it makes me think....

He wanted to take the "wait and see" approach to see if that would get cleared up through coughing.  But as much as we love her Dr he is not a Pulmonologist and when it comes to the lungs they are the experts.  So I took her back to him on Tuesday to see if he still heard that noise and he did.  I left there and got on the phone with Nemours Children's Clinic.

I had been pondering bringing her back to Nemour's instead of Shand's for a few weeks now.  I drive 4 hours to go to Shand's and I have been seeing a student Dr and really don't like that.  Having resident's in the room is all fine and dandy but I would like the person with the credentials to be making judgements about my daughter's condition.  And the benefit of having a specialist locally is very important for reasons above.

So yesterday I took her to Nemour's and saw a new Dr. who had come from AZ.  She has worked in 3 CF centers and even has some patients flying from AZ to book appointments with her (impressive!)!!  She spent a lot of time with us and Ayla really took to her.  I really got the sense that she "gets" CF.
We talked about her cough and any changes that have been made over the last month.  I told her that she was taken off HPTS when we were at Shand's last.  She was having a bad reaction and coughing to the point of vomiting.

She said that she may need to get back on that.  Hypertonic Saline has 2 main benefits:
1. Causing coughing
2. It works to correct the Salt chloride level in the channel (people with CF need extra salt)

But...she said she shouldn't be coughing to the point of vomiting.  Albuterol should work to protect her lungs if given correctly prior to doing the HPTS.  And albuterol given through her spacer (device to administer albuterol) isn't doing a good enough job.  She recommended Nebulized Albuterol.  So between that and the HPTS and Pulmozyme we are up to 3 nebulized meds per dsay, 2 of which are twice a day and the other once a day.

If you know anything about nebulizer's you know that you can't mix meds in the little cups that attach to the hosing, and you have to keep them separate and they must be disinfected after each use.   So for three different meds given multiple times a day and vest therapy to do for an hour a day we are going to be busy folks.  

But whatever we need to do to keep our girl healthy-is considered a pleasure.

The Dr. also ordered a chest x-ray and ct of the lungs if the xray doesn't show what we need to see.  We had that done this morning.  I am no doctor but I thought I could see some scarring.  We will see if I am right when the Dr. calls.  She also did a throat culture-we won't have those results till next week.

I feel like we have a plan in motion and really feel good about the change in Docs.  Now if we can figure out what this noise is and how to treat it we will be good to go!

By the way my child is a TROOPER!  She was not happy about having the culture done yesterday and covered her mouth.  The RT talked her hand away and she agreed to do if she could do it herself.  He put her hand on the swab and he did most of the maneuvering but she really thought she was cool and in control herself.  She didn't shed a tear.  Then today getting the x-ray I stood behind the glass (b/c of the baby bump) and this nice x-ray tech gave her a stool and she stood tall and took orders like a pro.  I was able to see the images so that was cool.  I have to admit she may be getting to big for mommy's liking!

Will update with more information as I get it.

Frequently Asked Questions about CF & how it affects our lives...

Often times I get asked different questions about Ayla's CF and how it affects our every day life...and most recently how it will affect our baby due Nov 28th.

Some of the questions I can answer, some I cannot...here are a few I have been asked lately and my best effort at answering them.

Q: Does Ayla have to take pancreatic enzymes forever?
A: Yes, Ayla will have to take these pills every day for the rest of her life, unless a miracle happens.  She takes 3 pills at each meal and takes up to 20 each day!
Q: What does her day look like living with CF?
A: Pretty Normal, the differences are fatty meals for all meals and encouraging high-cal snacking.  She does her Airway Clearance Therapy twice a day for 30 minutes and does an inhaled nebulizer treatment before bed. Unless she is sick then the number of treatments go up.
Q: How will CF affect our unborn child?
A: There is a 25% chance this baby will have CF, a 50% chance this child will be ONLY a carrier (like Larry and myself)
Q: Does any of the routine blood work that my Dr. orders determine if the baby has CF?
A: No, the only way to tell if the baby has CF is to do an Amniocentesis
Q: Am I going to have an Amnio to determine if she has CF?
A: No, I am not going to have this test.  I always thought for sure I would.  But with this pregnancy I have felt differently.  Of course my Dr will be taking extra good care of me and be watchful.  I am going to have her tested when she is born.
Q: Does anyone else have CF in our families?
A: No, as far as we know from testing my mom, sister, Larry and I are carriers.   None of our other family members have been tested.
Q: How did the Dr know Ayla had CF?
A: Bowel Obstructions are a common sign of CF and Ayla had one in utero.  We did not know for sure until she was tested through newborn screening.
Q: What is CF?
A: Click here to read about CF

There are a lot of questions about the future that I can't answer.  We can only do our best to keep Ayla and everyone else in our family healthy and pray for the best.  For now I am just trying to enjoy my pregnancy and the normalcy of it all...

Lia Sophia Party A "Success"

Wow, what a great way to FUN-raise!! It was just that a lot of fun!  A bunch of ladies eating and looking at pretty jewelry.  My Host Debi Gunter was such a blessing to me.  She bought all of the food for each guest and had an amazing spread of all her prettiest pieces.

We had about 28 people there and I was so excited to have all of them there, some I knew and some were friends of Debi's.

I spoke a little bit (nervously) about CF and Ayla and explained where the money were raising is going and why...

Then it was mayhem as 28 ladies tried to squeeze around the tables of jewelry.  Everyone found many items they wanted and a few of their favorites were purchased.

Lia Sophia has great incentives for Hostess' (me) I got a 120$ in free jewelry just for booking the show.  Then based on your shows sales you get 20-40% of sales in free jewelry, plus half price pieces and 15$ pieces.

Our party did a total of............................................over $1800.00!!!!!! So 30% of that goes to the CFF through Ayla's Army which is appx: $520!!!

If you have a local Lia Sophia rep you should try and work somthing out like this. But it will be hard to find someone as generous as Debi!

She has offered to book shows through 4/30 and give a portion of her proceeds to the CFF-so If you live out of town and want to do something like this contact me and I will forward her your info.  She can do online shows as well!!

Big thank you to everyone who came out and supported us!  As you can see from my last post I have an amazing circle of family and friends.  Each event we do each year is a success because of that,  so THANK YOU ALL!!

~krista

Ayla's Army Fundraising Events.......

2011 has brought many new ideas and people getting involved in our cause.  Last year we had a couple events and ended up raising 10,000 for the Cystic Fibrosis Foundation.  Which I was very proud of, but of course reaching one goal breeds higher expectations.  This year I really hope to do better than that.  I am so grateful for all of my friends and family who have signed up to help!

In late February we had our 2nd annual Rummage Sale for CF.  It was very successful again this year and we had so many items donated and ended up doing a whopping $1300.00!!

On March 10 we had our First Annual "Steak and Take" -we got our church and a local restaurant to donate some of the food items and sold 400 tickets!! We had to turn at least 50 away b/c we were sold out -we could have done at least 500!  We will keep that in mind next year!!  Our 2nd event brought in $2400.00 profit towards our goal!!

I am so excited with all that's going on, I sometimes forget how much I love this time of year!! Fundraising is something I would have never thought rewarding in my younger-more selfish years.  But I get such satisfaction after completing an event and deeming it a "success."

This Tuesday I have a new friend who is throwing a Lia Sophia party at a local restaurant and donating all her profits to Ayla's Army and the CFF!  What a great way to couple fun and fundraising together especially for women.  The jewelry is gorgeous and I can't wait to have some "girl-time."

I will be sure to update on how we fair after our party tomorrow night.  I am so blessed by all the new people in my life giving their time and talents to benefit Ayla and everyone else with C.F.

I know we are going to blow away our goal this year!!!

-krista

"Choosing to SEE" A great Read.....

CLICK HERE TO HEAR ABOUT THE BOOK

Ever since Ayla's diagnosis I have been longing for a book that I could relate to.  From a source that I could trust in.  

This book is perfect for pretty much any person in any walk of life-but for me..I feel like it was written for me to read it...

For a few years now I have been struggling still to deal with the turns my life has taken, things just hadn't turned out the way I thought they should.  Why had God let these things happen to me? To my family?

This woman has had some things happen to her that I can't even fathom and somehow she remains positive.  I just finished chapters 22-28, these were the toughest to read.  I literally cried the entire time reading them.  

This book is not just about the tragic accident that happened to her family, but is also about the raw emotions and true doubts a christian can have when you don't feel protected by God.  So often people in the church paint a picture that you can't be mad at God and still be a christian.  And they even go as far as telling a person who has just been through hell on earth that "this is all part of a plan."  Even though that statement is true, and looking back now I can see that.  But in the moment you really don't care about "the plan."-when all you can feel is the PAIN!  

The author's son said something in his eulogy to his sister that really hit home with me.  He said that when your in a "mess" it's like being up close to an abstract painting by God's hand-very out of focus and you can't understand what it is....But the farther you get from the painting (or the more time that passes) the clearer the "big picture" becomes.  

That really made sense to me to describe any trauma in that way.  When I was was in the midst of 3 months of surgeries, ventilators breathing for my baby, fear of her death and sheer panic I could not see past what was in front of me.  I could not see that nearly 4 years later I would have an odd's defying, happy, healthy, energetic, smart, beautiful little girl.  I could not see how my story would affect people and how it would affect me.  

I am not even finished reading this book yet and it has affected me this much already!  I would encourage anyone who is dealing with questioning God and his plan for your life to go out and get this book.  Reading her story will remain in the fore-front of your mind long after you close the pages of her book.  

~krista

CF and GI Clinic Updates

Our first appointment was with GI/Liver Clinic.  The Dr. was overall pleased with her demeanor and thought she looked really good.  Her tummy was nice and soft when he did his exam.  

A few months back in August I posted about an Ultrasound he ordered for Ayla due to an elevated Alpha-fetoprotien level in her blood work.  The U/S came back normal and I thought that was the last I would hear about it.  But he wanted to tell me that he is going to be watching that level with each round of labs he does.  Apparently a rise in Alpha Fetoprotien levels can mean some sort of growth/mass within the liver.     

*Now this is worst case scenario, which of course they have to tell us...but we REFUSE to believe that's the case for Ayla*

Needless to say we repeated labs today and are awaiting test results.  I know you are thinking...."her ultrasound showed no mass" but apparently an U/S can only detect larger growth's and could miss a smaller one.  There are types of scans that he will order should labs show elevated levels again. 

*Again we are praying against this*

So that issue is very much on my mind....but I am just eager to hear the confirmation of what I already believe..that Ayla's levels will have returned to "normal" range.  

On to the next thing...we're testing Ayla's stool for C-diff!! Yes...it's a possibility she has this again.  She's been on 3 different rx's for her cold she has now kicked!! And that's when C-diff rears it's ugly head.  Her tummy has been hurting and her BM's have been pretty nasty.  

He also recommended a change in diet to rule out a Fructose Mal-absorption.  Since fructose (sugar) is a type of lactose this could cause some pain and bloating as well.  I have tried this before when we were dealing with C-diff for a period of 6 months and seen some improvement.  I have tried to incorporate some of these ideas all the time in her diet but at times....we all reach for the easier packaged snack..and I am guilty of that. 

So I think we are going to try and make some changes again and see what we get.  Taking the "sample" to the lab tomorrow to test for C-diff- we usually hear the same day-so as updates come on these labs I will post at that time.  

We would appreciate all the prayers we can get for Ayla her health and these labs.  

CF Clinic was rather uneventful...which is great!! She sounded great, she is at the 50% percentile for weight at 32.5 pounds.  I was excited to show them her PFT results that I had done at a local children's hospital (to show that she was able to do them) it was mostly practice for her but now they are going to perform these tests at each visit and were able to get a baseline today!!

She is really such a trooper, we had labs drawn, appointments all day and sputum culture and she was still a joy to be around!!

~krista

CF Mom's Group & New Science from the CFF

One of the most encouraging things about last night's meeting was seeing the Foundation's Pipeline of new Drugs to treat CF and how it's evolved in the last 7 years!!

Below is the Pipeline from 2003 (No drugs in phase 3 trials)

Below is the Pipeline for 2010!! To many drugs in phase 3 to count in phase 3!

Just look at how far we've come!! This progress is your money from Great Strides and other fundraisers hard at work!!

Last night's meeting was the largest group that has ever gathered for a mom's group (10 mom's and grandmas) and my first ever.   I have to admit I was very enticed by the members of the foundation coming to the meeting.  But once I got there and got to meet some local faces of CF mom's I was very glad I came.  I have been reluctant in the past to attend these meetings something about bonding with women over our sick kids turned me off.  But I was wrong!  I learned so much last night from mom's who had been where I was, and about medicines Ayla was taking.  These meetings are well of knowledge that I had been missing out on!!  And the ladies were all women I could see myself be-friending.  So needless to say I changed my tune!!

Claudia Werner gave the Science update after dinner and it was encouraging!! The first thing she spoke about was the pipelines above.  

She told us that:        

• 20% of Drugs that make it to Phase 1 -get to patients
• 50% of Drugs that make it to Phase 2-get to patients
• AND 80% of Drugs that make it to Phase 3-get to patients 

That's great news for us waiting for the VX-770 & Corrector 809.  I asked a question I had been wondering since hearing about this "control":

Would CF patients still have to take enzymes and do other treatments once this comes out?

And the answer was to my understanding that this drug if approved would STOP CF in it's tracks.  If you have a young child who doesn't have lots of lung damage, their lung and pancreatic function could greatly be affected.  So there is a possibility that Ayla will not have to take enzymes once these drugs are approved!!  It won't fix what's broken....and won't take CF away but our kids won't die of CF they will die with CF.  

She then went on to tell us that Dr. Beall from the CF foundation said that this drug will affect all organs positively.  

This should give all of us such fuel for Great Strides 2011, I know I will work to make next year be the year that we fund the "control drugs" for CF.  Trials of the combination of VX770 & 809 should begin within a year!!

It really was a great night, we talked about homeschooling, stages of life for CF kids, Doctors, fundraising efforts and lots of other things.  I know I will be attending other meetings and am excited about that.  

We are so close to making CF=Cure Found-  It's very exciting and on the top of my prayer list! 

I wanted to share everything I heard, I'm sure I forgot some of it-so much information to process.  But it really is great to know that the foundation is working diligently toward this goal.  And if you look above you can see progress is being made.  

It's definitely something to be excited about if you live with CF.  Our kids, friends, brothers, sisters, aunts, uncles, moms, dads and all people with CF could be given a new lease on life!  

I desperately want to be able to tell Ayla when she's old enough to understand the miracle of the cure that was created especially for her.  

~krista 

News I've been dreading to deliver....

I haven't blogged in a while....I know...I'm sure those of you who read this were expecting exciting baby updates to come from me.  And that's part of the reason I haven't written.  I haven't had anything good to say, we have been going through a lot these last couple of weeks and I didn't have the words or the desire to share.
For those of you who are close to me know that I am the type of person who really withdraws when things get tough.  I have preferred texts to phone calls these past couple of weeks from pretty much everyone.  I just haven't had the energy to make those loved ones feel that I am "okay."  When I wasn't sure I was.
I will stop explaining and just say it.  I lost the baby last week.  I went in for what should have been a "boring checkup" and it turned out to be another appointment @ my OB where I received the shock of my life.  First learning of Ayla's abdominal "mass" and now to hear no heart-beat and see no movement from my 2nd pregnancy.
After more testing to confirm the miss-carriage, my Dr. scheduled me to have a D and C.  She said based on the ultrasound this most likely happened around 13 weeks.  I had no signs or symptoms, I was very much at peace with the health concerns for this child.  It felt like a punch in the stomach.
I had the procedure about a week ago and recovered well.  I went to my sisters home in Knoxville for a few days to rest and have "girl-time."
I got home today and looked on the fridge and saw the only evidence that I was ever pregnant for a 2nd time...my one and only ultrasound picture at six weeks.  It's hardly nothing to look at, but something i will treasure forever.
I am feeling positive about trying again but very fearful about many things...including CF, and now miss-carrying.  I am eager for my post-op appointment to hear what my Dr. recommends and find out when we can try again..
Thank you to all of our friends and family who have been praying for us!

Ayla Appt Update: We did not make it to her appointments due to the above, they were re-scheduled for June 30th.   She is doing well and had so much fun with her cousins Gavin & Nolen!

~krista

Quarterly CF and GI Appointments among other things...

Tomorrow we are heading down to Gainesville for Ayla's appointments with her Dr's at UF. We will leave after ballet and lunch and hopefully she can catch a nap for at least half the way!

Our appointments are @ 8:40 & 10:30 EST. Update to follow.

Ayla has been doing pretty good. She seems to be all over her ear infections and feeling well.

Her "BM" issues still show themselves at times, her belly size has been really good though. Looking the smallest I've seen it. Not sure if she is just growing into it (like her Docs said she would) or if that is a result of something. But it is so nice to see her tummy looking more and more like other kids her age.

Baby#2: I am going on 14 weeks this wednesday. I am feeling good, a little less tired but not much energy still. I get spurts where I feel like conquering a whole bunch of items on my imaginary list and then they go away! We have an OB appointment on Thursday @ 10:30. We are excited. Last week we found out that we had been "had" by Midwest Insurance co. Paying for a very exspensive maternity rider for months and finding out from them that they will pay 25% up to $4000.00! Thats a $1,000 PEOPLE!!! Including the Dr & hospital's costs. So after a day of hyperventilating I got it together and cancelled the policy. Because paying our monthly premium from now until baby comes in November would provide more $ than they would pay. $800.00 more!! So from now on we are to pay 266$ at each OB appt (yay!) and hope and pray medicaid comes through. I have heard in FL if you are pregnant and not-covered that they have to approve you...not sure if this is true...but i am choosing to believe it!!

Another note: We are looking for a house! It's exciting to move but also a headache...since we just moved into our house in Aug of 09....I am going to view a home that we would love to rent on Thursday afternoon...it's out of town but in a wonderful neighborhood. I was worried that we would spend a lot more money on gas but then....I remembered that larry and I pretty much only hang out with each other.(haha)...and this place offers an array of entertainment options...my mom is also like 5 minutes from this place. So we will see..

ALSO- we are so excited to be going to see my sister in Knoxville on Saturday! We are going up to stay for about 5 days and during our stay she will have her Sonogram to determine the sex of her 3rd child!! We are all so excited!!

I think that's all the updates I have for today...I will update after Ayla's appointments, praying for weight gain and good labs!

<3 Krista