The Breathing Room

A Huge Day For CF Research!

2012-02-01T09:27:00.000-08:00

Yesterday was an amazing day for the CF community. Days like that re-affirm for me that there is hope for Ayla and all others with CF. I can't wait until we see the day when Ayla gets her miracle!

I just know its going to happen!

Read This for more information on the News!

Autumn-Faith is 2 Months Old!

2012-01-30T11:45:00.000-08:00

What I'm Up To:
I am loving sleeping on my tummy
I love to be held
I love my sister and always find a smile for her
I am cooing all the time these days See Video of Me

What I'm Wearing:
I am wearing size 2 diapers and 6 month clothes (mostly)
I love comfy clothes and lots of bows!

What People Say About Me:
That I look like my sister but there's something different about me
That I am so sweet

Other Stuff:
I love white noise machines
My legs are so chunky and cute
I've settled into somewhat of a routine now, I am much happier these days! I love to look around for about an hour after feeding but then am ready for a nice nap in my bed. Nights are going better now-I go down after my 7 o clock (ish) feeding and mom gets me out of my bed for my 1030 feeding then I get to lay comfortably on my tummy all night in mom and dads bed. I usually wake up once or twice to feed at night.

A Note From Mom:
Dear Autumn,
I am enjoying being your mom and watching you grow. It's so neat to watch you change each and every day. My favorite time with you is early in the morning or in the wee hours of the night when you coo and smile at me. I am feeling like I know you better and better each day and look forward to spending time with you and your sister. We all love you so much and couldn't imagine our family without you! Can't wait to see what next month holds for you!!

Love,
Mom

Ayla Update

2012-01-13T10:41:00.000-08:00

Ayla is doing great! She just started back to school for the 2nd half of the school year. She has done so well with school, she far surpassed my hopes for her this year. I am so glad we decided to put her into school this year. It's amazing how much she has learned in such a short amount of time. We are already thinking about next year, starting Kindergarten and where we will send her. It's going to take some getting used to 5 days a week.

(Ayla with my cousin Hilari)

Health-wise Ayla is also doing great, we just had CF and GI clinic this week and got great reports at both. She has grown so much she is in the 75% for weight which is awesome! She finished a long stint of antibiotics and inhaled meds to make sure the Psuedo bug was gone. We are waiting on culture results to see if she's still clear. If she is Dr. S wants to do a bronch (first one ever, eek) to get a good culture and make sure her lungs are pristine. So we are awaiting that news.
GI clinic at Shand's was great as well, they basically said Ayla is a walking miracle and could not be doing better. Her liver enzymes were all normal and we don't go back for 6 months!
We just thank God everyday for our little miracle baby! Ayla is such a blessing and energetic little girl, she makes each day so much fun. Did I mention she was funny??!! She is hilarious and sings like a bird!
I can't believe she will be 5 in just a couple of months! Where does the time go??

Autumn-Faith Is 1 month old.. (kindoph)

2012-01-13T10:31:00.000-08:00

Check Me Out!

Mom was slacking and just posted my pic because I am actually 6 weeks old now!

What I'm Up To:
I've been holding my head up for a couple of weeks now
Cooing
Laughing
Loves to be held-Dont think about putting me down!

What People say about me:
That I look like my mommy but also my big sister
"Wow, look at all that hair!"
That I have a tan & long fingers!

Other Stuff:
Mom was thinking I may have a touch of Colic because I get really fussy sometimes but there's really no pattern to it-so she's not sure- I'm already tough to figure out!
I am eating about every 3 hours during the day and 3-4 at night. I'm nursing totally and doing really well with that!
I'm not letting mom get much done or get much rest these days!
I'm wearing size one diapers and I have shapely legs and filling out "nicely"
I really love my big sister, ever time I see her face I just smile!

Note from Mom:
Dear Autumn,
I am so happy to have you in our family, you are so beautiful! I love your morning smiles and the little noises you make. I love how happy you are to see your sister and how much you love being rocked by your daddy. I am so glad your mine!
Love, Mom

Trying to Catch Up!! Christmas 2011~

2012-01-13T10:20:00.000-08:00

Wow I haven't blogged since before Christmas! I have missed so much on here lately it's hard to know where to start!
After getting the amazing news that our 5 week old Autumn was CF free I haven't done much updating! That news is still sinking in....I remember at this age doing manual CPT in the NICU with Ayla and it's just amazing to know that I don't have to do any of that!

(Autumn with our Amazing Pediatrician)

We had a great Christmas the four of us. I don't have any pictures of it! I know pretty bad-I charged all the camera's the night before and when I woke up none of them charged and I ended up using my cell phone (boo!)
I have a few pictures of the girls but none of us together! I still don't have a picture of our new family-I really need to get on that!

(How Autumn spent Christmas!)

(Ayla in her Christmas Dress)

(Our girls! This was the best I could do ;0)

(Christmas Morning!)

How we managed to get Christmas done this year is beyond me! The last few weeks of 2011 was a major blur for me! But a definite great end to the year! We had so much to be thankful for and were blessed beyond belief!

Results

2011-12-20T15:11:00.000-08:00

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!

Screening Results....Just in time for Christmas!

2011-12-19T08:23:00.000-08:00

So tomorrow is the day for results on the PKU test which screens for many things among those is Cystic Fibrosis. We knew our daughter would have a 25% chance so this day has been weighing on our minds. We have been praying for a long time about this and have faith that she will be CF free, but the lingering doubt is scary at times.
We have looked for all the "classic" CF signs and she is without a single one thus far. We have even tasted her skin and she is not salty like her big sister.
We will know tomorrow morning and hopefully get the best Christmas gift ever!
I'll update as soon as i can!

Autumn's Birthday

2011-12-19T08:18:00.000-08:00

Outside the Hospital

Patiently waiting

Big sister arrives

Here she is!

All smiles

Big girl!

Mommy and Autumn

Classic C-Section picture

She came out crying and didn't stop till she ate

Sisters meet for the first time

Love

Nana and her 11th grandchild

Papa and Autumn

Mama Elsie and Autumn

"Little Nanny" and Autumn

Grandpa and Autumn

Beauty

Mommy and Autumn

Grandma and Autumn

Us girls

Mimi and Autumn

Aunt Lezli and Autumn

Uncle Robert and Autumn

Papa Harry and Autumn

We are so blessed to have another beautiful daughter!

Birth-Day Dementia

2011-12-04T10:06:00.000-08:00

I am going to do an entire "birth-day" post but I have to write this down before I forget....I had had my hospital bag packed for weeks and didn't really go through it much before checking into the hospital for my c section. After wards we opened it to get something I needed and lo-and-behold we found the first of many things I had "forgotten."

If you know me, you know I don't forget much and when it comes to packing I almost always have everything I need every time. Mind you I packed for Ayla to stay with Nana for 2 days, packed meds, treatment cups, hoses, clothes with coordinating bows for school, toothbrush, etc..didn't forget a thing for her!

But as our hospital stay went on I realized I had Larry one "holey" pair of underwear and none for myself and ran out of clothes for Autumn our 2nd day in....

Before our first trip out tomorrow I am calling in re-enforcements to thoroughly check my diaper bag, ha!

Autumn Faith Has Arrived!

2011-12-02T10:08:00.000-08:00

Our baby girl arrived Tuesday morning at 7:46 am and weighed 8.5 pounds and was 21 inches long! She came into the world crying and hungry, she nursed for over an hour in recovery. She has a head full of dark brown hair and is beautiful just like her sister.
We are very thankful to have been given a healthy baby girl and appreciate all the blessings and prayers from everyone.
I will post a full update with more pictures when I have more time.

Tomorrow is the big day!

2011-11-28T14:00:00.000-08:00

We are scheduled for a C-Section tuesday @ 7:30 am! Can't wait to post pictures of our little girl! We are so excited to meet you Autumn-Faith.

November the 24th

2011-11-23T07:53:00.000-08:00

This day has a few different reasons it means a lot to me....This year it falls on Thanksgiving which is always a wonderful day with family. Last year it was just a regular day to everyone else but to me it was the day I was due with what would have been my 2nd child whom I lost to a miss-carriage at 13 weeks.

Click Here to see what we did last year on November 24th

This year when I found out I was pregnant again almost one year to the date that I was last year I was given a due date of November 24th (again). My date has since been moved back to the 28th but the 24th has been the one that seemed to stick for me. I am sure at this point (with me not progressing much in the area of labor) it's mostly wishful thinking that I could hold her tomorrow and have her naturally but it's a good thing to wish for!

How amazing would that be if God chose the same day a year later to bless with me another child! On Thanksgiving no less! What a Thanksgiving that would be!

This baby has been an answer to prayer in so many ways for our family, this pregnancy has been no less than perfect and the type of experience my husband has prayed for.

I am good with whatever day and whatever way God chooses to bring Autumn-Faith into our lives...I just couldn't help think of what an amazing page that would be to add to our already amazing story!

Here's Hoping!

Ayla's 4 yr old Thanksgiving Program

2011-11-21T14:06:00.000-08:00

Ayla had a thanksgiving program last Thursday night at her school. They performed a song and we ate a "thank-you" meal with her. Ayla had a table-full with Grandma and Grandpa, Nana, Papa and Mama Elsie there. She was so cute and did so well. There is a video below of her performance. We are so proud of our big girl!

Happy Thanksgiving!

39 Week Update

2011-11-21T12:47:00.000-08:00

So I have told you about my photo-challenged husband...well this is more proof of that...But it does the job!
I had my appointment today with Dr. E and got checked for the 3rd time....and I was still 1 cm and "thick" so I am a little discouraged. But I really didn't feel like anything had changed so I was prepared for that.
Then came the "what do you want to do" questions....I really envisioned myself having a natural childbirth...a healthy baby has always been first priority but a natural birth has been a close second. Having already had a c-section I can't be induced so it's just a waiting game.
I decided to go ahead and schedule for November the 29th-the day after my due date and last appointment. This will give her another opportunity to check me and see if I have made any progress. I hope that I will have so I can postpone the procedure but if I'm still @ 1...she's coming out!!
I am ready to see her face, look at her fingers and toes and introduce her to her sister and family!! So at least with this option I can began making preparations...but let's be clear...I am totally ok with her coming anytime!

Christmas Tree Done!

2011-11-21T12:25:00.000-08:00

I wanted to get the tree up so I didn't have to worry about it not getting done with the baby coming!

Ayla was my big helper!

Ayla was so proud!

Hanging her ornaments!

Can't believe how many ornaments she had this year...I remember her first and now she has so many and really enjoyed hanging them all. We even got one from Disney World to remember our first family vacation.

Christmas Tree's are so much fun! Can't wait to go purchase the girl's ornaments for this year!

Autumn's Room Unveiled At Last!

2011-11-16T18:50:00.000-08:00

I have been working on Autumn's room for many months and I am so excited to finally post these pictures! I am so excited about the way it turned out, just like I had envisioned it!

Before Paint

After Paint and wall art added by a friend

(we went with light grey walls and dark grey flowers)

Her name canvas' made by my sister

Custom curtains sewn by my amazingly patient mother in law Karen

This will be my nursing corner

Our verse for Autumn

My wall unit i got off craigslist ($75) packed with baskets

Crib wall

larger view of the room

Diaper Station....antique piece refinished by my mother in law karen and changing pad my mom and I made

left side of the room

Right side of the room

Love the dividers in this drawer

All packed and ready to go! Just waiting for Autumn to decide it's time!

Thanks to everyone who had a part in the creation of her beautiful room!

38 week photo

2011-11-16T12:32:00.001-08:00

I really dislike this picture but this blog is for memories so I'm posting it. Wow I am large!! Come on Autumn!!

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38 Weeks......

2011-11-14T10:40:00.000-08:00

So not much to report! I went to the Dr today and was still @ 1cm and "thick." So I guess Autumn is just really comfortable in there and wants to stay for her entire allowed amount. I am due on November 28th (2 weeks) so that's ok.
I got a little antsy b/c just last night 3 baby girls were born from friends who I have been pregnant with and I am jealous-I guess!

But the important thing is baby and mommy are doing well and she will come when she is ready I suppose.
I am going to start a list of projects that I want to do to pass these 2 weeks...up first Christmas Tree!!

I hope to have a picture soon to post of myself. I am looking large and I'm sure I need to document this state that I am in....

Ill keep posting updates as they come!

Nautical Shower for a Friend

2011-11-14T10:35:00.000-08:00

Last Sunday I hosted a baby shower for a good friend of mine who is due with her first child, a boy in January. This was my first time hosting a party like this on my own and I had a lot of fun researching ideas on Pintrest and blogs!
I got a lot of great crafting ideas and decided I would give them a try. I found out something new about myself. "I'm crafty"-when I wanna be!
Here are a few of the projects I was working on and pictures from Molly's Shower:

I made these for the Mom to be & Grandma's

I made this wreath-idea off Pintrest!

Ayla decided she wanted to help so she colored these shapes!

This was our cute "Welcome" sign

My camera was not working right..but this was an idea I loved...have guests fill out addressed envelopes to "save Molly some time"

Words of Wisdom for Mom

Ready to Pop- Popcorn party favors!

Loved this idea- to hang in his room!

Some decor in her gorgeous house

One of our tables!

A view of the gifts and decorations (and mom enjoying something-haha)

Our cupcake display

Cupcake Toppers off Etsy

Some of the delicious food we had

Mommy to Be!

Molly and I

(disclaimer: I really dislike this picture of myself but it's the only one I had)

I had so much fun planning this shower and am so excited to meet baby Caleb!

my 37 week pregnant feet

2011-11-09T14:03:00.001-08:00

The only pic I have available without my computer for 37 week update..

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37 week appointment

2011-11-09T14:01:00.001-08:00

I had my check-up on Monday and everything looked great! Dr. E checked me and I was @1 cm. Monday I have another appointment for more of the same. My feet are pretty swolen and doing much of anything is becoming difficult.
BUT....I can't complain...I was telling my mom that I just feel so blessed to be pregnant and having had such a great pregnancy I am not going to complain about how I feel. I am so excited about what the future holds and the not knowing is so exciting.
I have packed my bags so anytime is good with me. I am trying to spend these days cherishing these moments with Ayla and our family of 3!
My computer is in the shop so this is a post via phone...but I had to update..

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36 weeks Check-Up

2011-11-01T15:53:00.000-07:00

I went to the Dr today and everything looked great! Totally "normal" appointment, which I am so grateful for. This was the last of my 2 week appointments. I go back on Monday for my next check up and she is going to "check" me to see if anything is happening with baby girl. I sure hope there is some sign of something....because I feel like there is....

Ayla offered to take a picture of me for this post....This is what I got! She is so funny she keeps saying "mom your big" "you've got a big baby" I don't know how much she understands but I know she is excited! I can't believe we are on the home stretch of all this and not knowing how it's going to happen is so exciting!!

Dr Appointment & Trick or Treating!

2011-11-01T14:53:00.000-07:00

We had a fun time trick or treating with Ayla and family this year. I made a tutu for her kitty cat costume and it turned out really cute.

It got cool here in FL so we had to layer up a bit, luckily we had matching options! We went over to some family's house and took the kids on a hayride around the neighborhood, it's always a good time.

Ayla & Papa (my dad)

Our Family!

Some of the kiddies...

The outfit

Ayla had a check-up with Pulmonary that morning at 10 am. So we were up and at 'em pretty early to make it there after treatments and all. The appointment went well, her PFT's were way up from last time and her weight was great! She did however have a double ear infection! I guess this girl has a high pain tolerance because she never said a word! They did a throat culture to check for psuedomonas so I'm waiting to hear back from that.

Needless to say after this day we were all exhausted!

40 Pound Club!

2011-10-26T06:27:00.000-07:00

Ayla has officially entered the 40 pound weight class!! She has gained 3 pounds since August and I am so excited about that. Since weight-gain is an indicator of overall health-that makes momma happy!

35 Weeks and "The Mullet Fair"

2011-10-25T08:17:00.000-07:00

Every year in our small town of Niceville, FL there is a festival called the "Mullet Festival"-after the fish not the hair-cut. We live near Destin, FL and a bay lies in between full of these fish. This has been going on for 35 years and is kind of a big deal around these parts. Country Music singers from Rascall Flatts to Dixie Chicks have come to perform.
Back in the day it was the place to be, when we were younger we would hang out there all weekend.
Well since having kids Larry and I have not been in 4 years and Ayla was finally at the age (and height) to enjoy some rides. She was calling it the "Mullet Fair"-so the name stuck. We took her on Sunday and stayed for about 2 hours, that was about all my feet and ankles and body could take. She had fun and that's all that mattered...it reminded us that we have not been missing out on anything cool the last four years....

Riding the Pony...all by herself

Riding the Fake Pony with Daddy...

Totally Cute..

She won this bobbing for ducks...yes, it has skulls, roses and swords...ha

Riding the bikes....

Look Daddy!!

She loved this slide

making new friends on the carousel

Ayla and Daddy on the way out....

Here I am....35 week picture....I had to rely on larry to take a picture of me which is always scary but it works. When I look at this picture I see how frustrated I am...I couldn't find anything that fit me that morning for church or to wear out there. It's getting cooler and all my cute clothes are for summer. It doesn't help that I'm growing all the time and just feeling pretty gross lately. I can't believe it's almost November and Autumn-Faith will be here before I know it.

When I think about her birth I think:

How will it happen?
Will my water break one night while I'm sleeping?
Who will she look like?
How excited I am to see how this story plays out!!!
I can't wait to hold her and Ayla at the same time!!!
I can't wait to see Larry's face when he lays his eyes on her!!
I am only slightly worried about the CF test that will be done upon her birth...I am okay with whatever the outcome, but I am believing she will be totally healthy!

Only a few more of these weekly posts and I will be debuting our baby girl and our family of four!!

Pumpkin Patch Field Trip!

2011-10-18T13:29:00.000-07:00

Ayla's class went to the Pumpkin Patch today and the parents met them there. It was really cute, they read a story, made a craft, had a snack and did a science experiment. She had a lot of fun and I just love observing her in her "big girl" environment!

walking down with her class

She was so involved in story time

Pause for a picture

craft time

Ayla's Toilet Paper Pumpkin

She even got to pick out a little pumpkin

learning about sinking and floating objects

Smiling for Ms. Stephanie

Ayla and her class!

34 week baby belly

2011-10-14T19:36:00.000-07:00

Well technically 33 weeks and 5 days but who's counting...

Oct 18th 2011

I'm amending this post because I went to the dr. on the 17th and am now 34 weeks prego-I don't have another picture to post so I figured I'd piggy back onto this one.

Well I gained 2 pounds that has been the trend the last few appointments, one that I am ok with at this point. Dr. E said baby was looking great and that she had dropped! I had been feeling a lot more pressure and pain when I stand for long periods of time and that explains it.

I go back to the Dr. on Nov 1 and ill be 36 weeks, and then I start going every week and begin getting checked at 37 weeks. So it's all happening!! I still have some things that I'm not through with yet, so that is keeping me sane and not just watching time pass. But having a busy 4 year old is definitely helping. Ayla is so excited about baby sister coming soon and we are too!!

I'm 33 weeks....What am I up to?

2011-10-11T14:34:00.000-07:00

Materials

Finished Product

I have been feeling good, I have another check-up on Monday. I will be 34 weeks. I have gotten the nesting bug bad lately! I have been wanting to sew things and make other things....I made these wall decorations for Autumn's room today. It took a whole hour and half, easiest thing ever to do and pretty cute if I do say so myself. I stole the idea from my Uber-crafty sister Allison Gifford...she sews and makes all kinds of gorgeous things...

My nesting problem has not stopped with Autumn's room, it has spilled over into the entire house. I am seeing all kinds of things that are sticking out like sore thumb's to me that need to be changed. Hunting season is beginning so I guess this is my way of "busying" myself during the time I have.

I am also planning a rather large baby shower for a friend of mine on Nov 6th. I am really excited about it and although it's a big project to undertake I am glad to have something to keep me busy during this next month.

So that's pretty much it, still so excited to get to post pictures of Autumn's room once it's all complete. I really love how everything is turning out..

Things that have been on my mind......

When to pack for the hospital?
Who to ask to care for Ayla in the event I need to go to the hospital?
Who Autumn will look like?
Will I get to deliver naturally?
Trying to plan everything out so I can be the least stressed version of myself...which mostly includes making sure Ayla is taken care and has everything she needs.

The time is getting so close, I really can't believe Ayla is going to have a sister and I am going to have 2 daughters in less than 2 months! I am such a blessed girl!!

Pumpkin Patch/almost 32 weeks pic

2011-10-01T14:54:00.000-07:00

Daddy and Ayla

Mommy and Ayla

Daddy and his girl!!

Today was my birthday and we decided to take Ayla to the Pumpkin Patch at the church she attends school at. The weather cooled off a bit and for Florida...it feels like fall....She loves going here each year, they have a petting zoo, face painting and other fun stuff. We went to lunch and then went shopping to get Ayla some warm clothes. My thoughtful hubby got me the best gift ever.....a pedicure!! My feet are so excited!!

I am going to be 32 weeks Monday and I have a Dr. appt- I have been feeling really good. I've been getting really tired again in the afternoons and just feeling BIG! The time is still going by quickly, we have all been so busy lately. I can't believe we will be a family of 4 in so little time!!

I am feeling so blessed by life in general....can't wait to see what's in store in the upcoming weeks!

Picture Day!

2011-09-29T07:48:00.000-07:00

Ayla had her first "picture day" today, the kids were allowed to wear whatever they wanted-so that was fun!
She looked so cute with her big bow in her hair...I wonder what she will look like when I pick her up! haha

Ayla is loving school!!

2011-09-24T14:56:00.000-07:00

Ayla is absolutely loving school. On Thursday it was "parent lunch day" I came to eat lunch with her and got to see her in action with her little friends.

She was shy with me there at first but after a little while she opened up and introduced me to her friends. I got to talk to her teacher and she said she "talked all the time" and was very outgoing and played great with her friends.

It's always good to hear another's prospective on your kid's behavior. She looked so excited in this picture. She asks me to take a picture of her almost daily before school. It's her way of saying: "I look cute, so you should get this!" haha :0)

The Tues, Wed, Thurs schedule is working great for us, we are still getting used to waking up early and getting everything done in time to get in bed early-but we are getting better.

She is learning a lot already, recognizing more letters and often I will hear her singing little songs like the B-I-B-L-E....She thinks school is really cool!

Cayston Delivery

2011-09-22T15:14:00.000-07:00

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:

Wash Hands
Rinse each piece under warm water for 10 seconds
Put a small amount of regular dish soap (not white or antibacterial) into ziploc container
Put neb set into with warm water and put lid on and swish around
Rinse
Put into NUK sterilizer for 8 minutes
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!

Look at how Chunky she has gotten in 10 weeks!

2011-09-19T11:25:00.000-07:00

Ayla Update: Culture Results

2011-09-19T10:32:00.000-07:00

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.

Autumn Faith-30 weeks!

2011-09-19T10:24:00.000-07:00

We had our 30 week ultrasound today, it was a great appointment! She was sleeping and was so cute!! Ayla got to see her baby sister again and Dr. E. said she is looking perfectly. She is weighing about 3.2 lbs and I think she looks like a little chunky-monkey! She is head down and it's full of hair (which I also love). Ayla was just so beautiful with all her hair and her sister looks a lot like her! Autumn may outweigh Ayla though :-)
This time is just passing by so quickly, I can't believe I am already 30 weeks! Since I am going to try and not have a c-section we aren't scheduling that for now. Hopefully she decides to come on her own so I don't have to!!
The baby's room is coming along too....grandma is working on the last few items and then I can show you all. It's going to be adorable!!
Thank you for all your thoughts and prayers!

Ayla Update: Dr. Appt

2011-09-14T14:15:00.000-07:00

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

2011-09-12T11:19:00.000-07:00

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....

Baby Bump 29 weeks!

2011-09-11T15:15:00.000-07:00

29 weeks!

Kari Jobe Concert-Women of Destiny

2011-09-09T05:56:00.000-07:00

A bunch of us went the the Kari Jobe concert last night at Destiny Worship Center in Destin. It was so much fun and she was amazing.
A few of us got together for dinner before the concert at Carrabas. It was a fun night with good friends and family.

28 Week Appointment and Glucose Test

2011-09-08T12:00:00.000-07:00

I wrote this on Wednesday.....still waiting on someone to take a picture of me when I am dressed cute...which is not that often....maybe tonight!

Today I had the dreaded glucose test. My Dr. does a 3 hour in-office test that requires fasting, I was a little worried since I have been having some hypo-glacemic episodes lately. But I stayed up late pounding protein and I guess it paid off. Paid off in some ways....but NOT on the scale....I gained a whopping 8 pounds since my appointment last month. We will just blame that on the hamburger patty I ate and glass of milk I drank at 11:30 last night. I was determined to not have a spell......

Once I got to the Dr's office I had my fasting sugar taken and it was normal. So I drank the nasty orange drink that tasted like sunkist with no carbonation and waited another hour to be tested again. In the meantime I went back to see the Dr. since I was there for a check up as well. I always get nervous but I prayed extra hard for peace today and felt pretty calm and confident.

She got out the dreaded measuring tape and said I was "normal" and then found the heartbeat right away. She said baby is growing perfectly....and we talked about the contractions I had yesterday evening. Yes, I said contractions.....I was put on meds & bed rest with Ayla and hopefully I won't have that happen again...She said a few every now and again were "normal." I start my 2 week appointments now and at my next one we will do an ultrasound on the 19th! This will really be the point I feel like I will be able to relax about the anatomical development of this baby. So by the 30 week point we will def be able to know if we are in "the clear." And then I can move on to thinking about our final hurdle.....CF testing.

My 2nd and 3rd glucose readings were normal as well, so no gestational diabetes! I filled out information for my hospital stay and it really sank in that this is going to happen....I can't believe I will be mom to 2 girls soon.

I still have lots to do to get ready!

GF & GI Clinic Updates

2011-08-30T10:53:00.000-07:00

We had a follow up appointment with the CF center at Nemour's yesterday for Ayla. The Dr. wanted to ask about how her treatments for pseudomonas are going and give her a "once over" since we are in the middle of our plan for treating this. I told her she does amazing and really gives me no trouble with the amount of stuff this little girl has to endure daily to stay healthy.
Ayla had acquired a cold from starting school, apparently a lot of the kids came home with the same thing. But the good news is she was showing signs of getting over it this morning. So nice to see a cold come and go. The Dr. heard a small crackling in her lungs as she had heard before, she wasn't sure if it was due to the cold or something else.
She explained that at the end of this TOBI cycle she will want Ayla to have a "bronchoscopy"-which I guess is a good thing but I don't like the idea of her being put under for this test.
They were extremely happy with her weight gain...her weight was 37lbs and her height was 40inches. She is in the 50/50 club! Her BMI is 70% and they like it to be above the 50th-so I am really glad about that. Good weight gain in most cases is a sign of overall good health-so it's a major blessing.
So for now we are just going to see them again when we finish TOBI and stay the course.

GI was a "getting to know you" visit for us, this Dr. came from Shands and has worked closely with her Dr.'s at the liver clinic. I feel good about having a local GI physician for her who can co-ordinate a treatment plan with Shands. She has been doing good GI wise- we ordered some labs to check liver enzymes and vitamin levels. Other than that we will see him again in 6 months or so....

It was a long day of appointments and I feel really grateful for the progress Ayla has made....we can only pray the Pseudomonas will be gone and everything will look good when they do her "bronch."

26 Weeks and counting.....

2011-08-25T14:42:00.000-07:00

Looks like a big grape-huh?

So this week has been a crazy one with Ayla starting school. Autumn has been moving all over the place and being a very good little girl, she has me feeling pretty great!

My stomach is definitely out there as of now, I officially cannot cross my legs, put on my underwear with ease or bend down without making some loud grunt.

I have purchased paint for her room and will be taking before and after pics-so I hope to have the pictures up by this weekend!

Other than that my sister and my nephews are coming to FL for a quick visit next week and we have CF and GI clinic on Monday. That starts another busy week! Gotta love it!!

~Ayla's First Day of VPK~

2011-08-23T13:27:00.000-07:00

First day of VPK at Wesley 2011

She was so ready!

One with Mom

Being Silly

You would have thought this child had never seen the sun...she would not open her eyes!

Standing by the "Big Slide"

Outside her Classroom

At her desk

One from the hallway as I was walking away....yes I am "that mom"

Last Silly face!

Ayla had a great day today! The morning went pretty smoothly considering we aren't early risers and had about a million things to get done before we could leave. I even had time to co-ordinate her breakfast that needs to have dairy with her CIPRO that can't be given within 2 hours of Dairy, 3 treatments and lunch made and myself dressed all before 845 am!

She was so ready for today, she was very excited and never got upset when I dropped her off. I can't believe how big she is. I remember when she was born wondering if anything like today was ever going to be possible for her.

I went back for a meeting with her teacher this afternoon and she said Ayla was a very happy child, she seemed to adjust well and her enzymes went over with ease (what a relief!!) The kids were in the "Gym" while we met with the teachers so I went down to get her and she saw me and got a little upset. I asked her why and she said "a girl wasn't playing with her"-I guess there was one girl she really wanted to play with who wasn't co-operating. She still had good things to say about her day and talked about going back tomorrow-so that's a good sign!

What a big day we all had today! I know we will ALL be tired later today.....I felt really good about our decision to send her to Wesley, I loved the christian basis and all of the people seemed really nice.

All in all it was a success, we will see what tomorrow holds!

~Krista

Ayla Update!

2011-08-18T11:22:00.000-07:00

Ayla is doing better with her tummy-troubles. When her Dr. prescribed Cipro along with Tobi for Psuedomonas I read on the box not to give it within 6 hours of antacids. So I stopped giving her prevacid. There I go thinking I know everything, I should have called pharmacist b/c since she has been on her 3 week break from that regimen (we start back Sat) Prevacid has resumed and her tummy has been a lot better. We still have a oily stool here and there but I am beginning to realize that's just CF.
So today while talking to the pharmacist at the Cystic Fibrosis Pharmacy I asked him about my antacid theory and he said....prevacid is fine. Just no tums or Maalox or anything like that. So maybe this round will much less eventful on the GI side than last.
In NON-CF news....she is starting school on Tuesday! We have open house on Monday night and she gets to meet her teacher and she is so excited. I really feel like I made the best decision because I am really excited for her and not anxious. I am sure I will still be sad the day of. She's getting so big!! If all goes well she will be starting kindergarten next year and that will be cra-zy!!!
Hopefully everything goes well with getting her enzymes at lunch..that is my only concern. I am praying she can meet some new friends, she needs some play-mates!! But I will have lots of pictures from our first day and hopefully we can all get used to getting up a little earlier in order to get morning treatments done....This house doesn't rise early.......for now.....

25 Weeks

2011-08-15T07:34:00.000-07:00

My Husband actually took this picture!
A major improvement from previous shots!

Nothing new to report with baby "Autumn"-she's just kicking and moving and I'm looking forward to my next check up in a few weeks! Feeling really good and so thankful for that!

Mind Wars....

2011-08-11T07:59:00.000-07:00

Do you ever feel like a war is going on inside your head?
Last night I fought a battle......not the physical kind but the mental kind....

I somehow got the thought in my head that I hadn't been feeling the ~~the baby~~ Autumn move as much as I had in recent days and my mind took that and ran with it....

I know that I am 24 weeks pregnant and that "those kinds of things" don't often happen this late in pregnancy......but I spend more time worrying about losing this baby than the test for Cystic Fibrosis coming on her birthday.
I know what to do when those kinds of thoughts enter my mind....you know the kind....the gripping, walking through the situation kind of thoughts.....where you catch yourself right before the devastation sets in.
My mom always tells me to say "CANCEL" (see mom I do listen) and I do that....I began to pray and thank God for this baby -this healthy baby. I always find myself apologizing for letting doubt creep in on me and pleading my case.
I had this happen 2 or 3 times last night and even again this morning....the story always ends with Autumn giving a good kick or twirl where I have no question that it was her.
So if you think that I am out of the woods or that I deal with these things so well.....well......your wrong! It's a struggle everyday to say "NO" to those fears and the fears that come after I have said "NO" to those...but it is a choice....and I'm choosing to have "Faith."

Autumn Faith's room decor......

2011-08-10T11:51:00.000-07:00

Yes....I said it....My husband informed me the other day that we had indeed settled on a name...It's so weird this time...I love this name and it has meaning in all the right places goes beautifully with Ayla....but saying I'm settled...IS SO HARD!!

I don't think another name is going to come along and sway my decision however. This baby is so important to our family and we are so excited to meet her in a few more months! I think she deserves to be called by her name instead of "baby."

She is due in November and we are after all practicing quite a bit of "Autumn Faith" and giving this child's health to God. We know he will take care of her...

So this is what I have decided for her room. Ayla's room is an adorable pink and brown theme and I wanted to do something girly for Autumn but not the pink/black, or traditional girly stuff that you see. I love this and I will be able to buy additional pillows and stuff easy since the colors are pretty standard (black, grey, red, etc..)

I Cant wait to get started!!

The Never-ending "Poop" Saga

2011-08-09T11:39:00.000-07:00

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.....

24 weeks!

2011-08-08T08:17:00.000-07:00

I had my monthly Dr. appointment Friday with Dr. E. It's always something I look forward to but once I get in the room with her I get so nervous! Today was a quick appointment, just measuring and checking the heartbeat.
This pregnancy has been so great, it's going by so quickly. I have my glucose test next month and after that I have appointments every 2 weeks!! That means it's crunch time!!
I am feeling really good, it's getting tougher to do things like bend over and shave my legs. My belly is really poking out now and I have put on a total of 12 lbs so far.
I can't wait to start working on the baby's room and putting everything together. I am ordering her bedding this week, yay!!!

Sorry for the quality of pictures.....my husband is photograph-challenged.....this is what I get when he takes a picture..

not ready and squinting....

It's not that he doesn't give it his best effort....he will stand there and take a bunch of pictures of me but when I go to look at them they are all far away or you can't see my face or the body parts that I'm trying to focus on are not the focus....

So I resulted to taking a pic of myself while we were in the car.......

So this is what we're stuck with....But I figured any pictures are better than no pictures at all....

Disney Vacation Day 4-Hollywood Studios

2011-08-04T08:09:00.000-07:00

Breakfast at Chef Mickey's

She was still not "comfortable" with these guys...

Except Minnie-because she's a girl as Ayla said

The family

haha

Going into Hollywood Studios

This show was awesome!!

Ariel was her favorite princess

Toy Story ride

waiting in line

Larry and I rode this one together and had quite a competitive game of target practice....he won-but I was a close second!

Ayla's favorite store!

Dinner at Hollywood & Vine for Fantasmic Package

Under the "hat"

Our "Star" in the making

This was not cool but it was cool inside

Fantasmic Show

This day was rough....we were all so tired and even Ayla was just trying to avoid falling asleep. We had Chef Mickey's early and got to the park at a good hour. We stayed there till after lunch and went back to the room so the guys could take Ayla to the pool one more time before we left! Hollywood studios was fun but Magic Kingdom was by far our favorite! We saw the Little Mermaid Show, it was so cool-we would highly recommend it. We rode the Great Movie ride which Ayla really liked surprisingly. We went back to the room and Karen and I passed out like full on set your alarm for an hour from now for fear you may never wake up kind of sleep. Which I felt like the wicked witch of the west when I rose....We rushed to get everyone awake and ready for our dinner reservations at Hollywood & Vine and the Fanstasmic Show later that night. The dinner was really good, we tried killing as much time as possible inside the a/c since we had hours to kill before the show at 9. We went in the shops and sat on corners and people watched. And finally it was time to head up to the show, we were exhausted. The show started and it was really awesome! Ayla loved where the characters floated by on boats, we were having a grand ole time UNTIL.....I look over at Ayla she's got something in her mouth and I see glow in the dark liquid all over her legs. Yes, she had bitten the glow stick!! I freaked out, luckily the show was over because we booked it outta there and I was calling poison control. The package said non-toxic but "do not ingest" as well. So I figured better safe than sorry. Everything was fine and it ended up being the adrenaline rush we needed to make it to our car.
The next morning we packed up our stuff and drove 6 hours home somehow. We were all so tired when we got home, it was a great week!

Our Disney Vacation-Day 3 Sea World

2011-08-03T08:00:00.000-07:00

Entrance to Sea World!

(yes I am wearing tennis shoes with a dress, I wasn't proud of this-but my ankles recommended it)

Watching the Dolphin show

We found some A/C in the Abby and Elmo Show

Daddy and Ayla waiting for the show to start

We were trying to get a good picture but it was HOT!!

We went to the One Ocean show and Ayla was not into it.....

she wanted to ride rides!

Did I mention Ayla loves carousels??

A slide that Daddy got stuck in b/c he was so sweaty

Riding the "Shell-cups?"

Ayla posing

Ayla and daddy on the climbing ship

Some indoor aquarium that was A/C

We had just seen the shark tank and Ayla was terrified of this fake shark

Ayla with her Polar bear and some penguin pic

The penguin tank

We all rode the SkyView thing....

We thought Sea World was pretty overpriced. We ended up paying over 400$ for all of us to get in and with Ayla not being amused by shows the kids area wasn't big enough to entertain us for the amount of time we needed to make it worth the money. But we had to experience it with her and I was glad she got to go. She was more interested in the shops than anything else.

This day was also Scott's Birthday and we went back to the cabin got our suits on and went down to the pool that we hadn't had any time to enjoy. They have a big slide and Ayla loved it!! After that we went back to the room and got dressed for our dinner show at the Hoop-Dee-Doo review. It was really funny and a great end to our day!

Our Disney Vacation-Day 2 Magic Kingdom

2011-08-02T07:30:00.000-07:00

We rode the ferry from the parking area into Magic Kingdom, it was Ayla's first boat ride!

View from the boat

Entrance

When we first walked up they were performing

Us with the castle in the background....Larry wasn't ready for this shot but it was so good of us...

Ayla got some new shades

She thought these we "so cool"

Larry and I

Riding the "tea cups" with Grandma and Grandpa

Ayla and I rode the race-car ride, she loved driving

She loved this Buzz lightyear ride

As we came out Buzz was signing autographs! She wasn't into him,,,

She was enamored with "It's a Small World" ride

Next it was time for "Bibbity Bobbity Boutique"

Castle Package

Picking out her hair-do

Getting pampered

Admiring her beauty

After her photo-shoot a quick ride on the carousel

On the ferry, taking a break

We had dinner at Akershus Royal Table with all 5 of the princess's

Snow White

Leaving Epcot

Dinner was in Norway

Ayla was wound up and acting silly

The end to a great day!

We had so much fun at Magic Kingdom, this was probably the best day. It was a very long and tiring day but was filled with great memories. We rode the Peter Pan ride (which Ayla really loved), Buzz Lightyear ride, Race cars, It's A Small World, Tea Cups, Dumbo Ride, Carousel, we also had an appointment at the Bibbity Bobbity Boutique for the Castle Package and Ayla loved it. She was carrying on her own conversation with her "fairy godmother" and loved her plastic face guard from the hairspray. She told her "mommy always gets it in my eyes"-haha. After that we went for her photo shoot where she got three shots taken in her gown. We were crunched for time but squeezed in a few more rides before catching the ferry back to our car for the princess dinner at Epcot. This is where it got interesting. Our dinner was at 6:30 and we were running late we got to Epcot rather quickly but we followed signed to Norway and must have passed right by it because we found ourselves past Germany before finding out that we missed Norway almost the entire walk back. We must have walked 3 miles after a full day in the heat and my ankles couldn't have gotten any fatter. I had to sit down I got so overheated. But we made it and once we all cooled down we enjoyed the dinner. I was in such a hurry that we left the cooler with the enzymes all the way back in the car, so Scott volunteered to trek all the way back for them and returned just as the food came out. We were all dead tired at this point. Ayla got pictures and autographs from all 5 of the princess's for her book and ate up all of her cheese ravioli.

Ayla was running on empty and was being extra silly when we got back to our cabin. She tries to keep herself awake when she gets over-tired by acting crazy. She was such a trooper. We saw so many kids throw terrible fits and our Ayla was a doll!!

Oh yea, while inside Magic Kingdom we stopped at a little shop where they did portraits and profile cut outs. Karen wanted to get a profile picture of Ayla and I wanted a portrait drawn of her. She was not into it and it was very hot but when they guy was done it looked NOTHING like her. So we have a beautiful drawing of some strange little girl who is not our own. Don't know what I will do with it but it was a funny part of a great day!

Our Disney Vacation-Day 1 Animal Kingdom

2011-08-01T09:47:00.000-07:00

This was our Cabin at Fort Wilderness Resort

The night we got in we went to Chip N Dales Campfire Sing Along

Ayla got her Autograph book so we would be ready for day 1

Ayla was not amused with these characters...

Some guy singing

Entrance to Animal Kingdom

Daddy and Ayla-taking a break

Us with the "Tree of Life"

Grandpa and Grandma on the dinosaur ride

Ayla getting her "unicorn" face painting

Us with "Minnie"

Daddy & Ayla with Goofy

Grandma and Ayla killing time before dinner

Ayla fell asleep during treatments with her "squirt"stuffed animal from the Nemo show....it was a busy 1st day!

Animal Kingdom was a lot of fun, we saw the Nemo show and Ayla, Larry and his parents rode the safari ride. Which she loved. They suggested pregnant women not ride, so I sat out. Which was alright with me because I noticed my ankles swelling a lot. It was overcast on day 1 which was very nice, it even rained before we left the park. We left and went back to the room to get ready for dinner at Trail's end buffet, we enjoyed it!

Living Images Appointment

2011-07-25T11:47:00.000-07:00

I made an appointment with a place called Living Images that does Ultrasounds in our area. We wanted to get another look at our baby girl so badly! I was so glad we went, we got lots of great shots and Ayla got to see her sister!

Baby Girl Tucker 22 weeks

Definitely baby girl!

Isn't she beautiful?!!!

Us with the Grandmother's

Our Family of 4!

This is really the last post before we leave for our trip, I promise!

~krista

Disney Bound

2011-07-25T05:44:00.000-07:00

We are heading to Disney World Tuesday morning with our family and Ayla's Grandparents. This is the first vacation for our family.......well......ever! I have such a hardworking, motivated, entrepreneur of a husband that vacationing has taken a backseat to growing our family business these last few years. But boy are we excited!
We are staying on property in the Cabins at the Fort Wilderness Resort, we are all staying together for 5 nights. I am going to be trying my best to document every moment of this trip with Ayla. We wanted to take her on a special trip just for her before the baby came and what better idea than Disney! This child is going to FREAK-OUT, each tall building we see-she asks: "Is that Disney World"-she has no idea what's ahead.
We have been so blessed this past year in so many ways......and being able to take this trip is yet another.....so I will be taking a break from blogging for the next 6 days.....
Pray for me to survive the heat and to ingest as much H2O as possible....This place is going to be crazy packed and crazy hot!

~Krista

Update: Decision

2011-07-21T07:21:00.000-07:00

So I went with my "gut" and chose option A. I really feel good about it, I took Ayla with me to get her all signed up and she was really excited. Like I mean really excited-I was so glad to see that. She will attend school on Tues, Wed, & Thurs from 9-230 each week. This will make our weekends long and even allow for quick out of town trips.
We still have a few of the details to discuss about the enzymes, but I'm going to be packing them in her lunch and her teacher will get her lunch down for her and watch her take her pills. I'm really excited she will get the full experience from this place and we all have a schedule that works for us!

Thanks for all the suggestions, I really appreciate them!

~krista

Decisions, Decisions

2011-07-19T09:58:00.000-07:00

Help!!!

I got a call today from another VPK provider in our area that I had Ayla on the wait-list at. They had an opening and are holding a space for her and want to meet with me tomorrow for my decision. This provider was high on my list and these are the pro's and con's of each:

Option A:
PRO's

This provider is highly recommended
Ayla has even played there before during smaller meetings a couple times a month-so she is familiar.
Christian based
3day a week (W,Th,Fri)
School offers more the "complete" experience

CON's

Larger group of kids/bigger classes
Day's are longer and includes lunch
Administering Enzymes

Option B:
PRO'S

Montessori Type learning
Highly recommended
Smaller Classes
Shorter day, no lunch

CON'S

5 day a week program

The weekly schedule is probably the most important aspect to me, I have been really struggling with having her out of her home environment 5 days a week and having to administer all of her treatments so early in the mornings. I feel like she might not get enough sleep, with the way things have gone lately-we can't get treatments done before 9-930 at nights.

Not saying I can't get on a better routine, her life is so structured in so many uncontrollable ways that it would be nice to not have to kill ourselves to get things done quickly so often

So any opinions would be helpful-I have 24 hours to make this decision....Such a BIG decision!!

Our little Architect

2011-07-14T06:35:00.000-07:00

Daddy got her the 400 pc Lego set for treatment time! They create real works of Art together!

Sleep-over's????

2011-07-13T07:19:00.000-07:00

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...

2011-07-12T09:20:00.000-07:00

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!!!!

2011-07-11T08:37:00.000-07:00

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??

20 Weeks with baby girl "no-name"

2011-07-10T10:42:00.000-07:00

Made it to 20 weeks and I am feeling great!

Happy 4th of July!

2011-07-06T13:49:00.001-07:00

Happy 4th Of July!!

Fireworks over the Bay!

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

2011-07-05T09:03:00.000-07:00

we grew

Pseudomonas

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

what is this? CLICK HERE

Update on Ayla

2011-07-05T08:24:00.000-07:00

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

2011-06-30T12:55:00.000-07:00

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...

2011-06-28T06:47:00.000-07:00

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...

Had To!

2011-06-27T12:57:00.000-07:00

My sister Allison (2010) 16 wks

Me 18 weeks!

No we are not pregnant at the same time but I raided her maternity clothes and realized we had both taken this picture around the same time! Thought it would be funny to compare them~

Isn't my sister GORGEOUS!!???

18 Weeks!

2011-06-27T08:46:00.000-07:00

18 Weeks!

This picture Ayla took of me (LOL)

I am trying to be better about posting these pics, I know I will love having them once I am not pregnant anymore!

Changes....hmm....well my nausea has subsided a bit.....I am currently on day 4 with no vomiting spells so that's great! I have had more energy and more motivation to get out and do things!

Name update: This weekend we may have found THE name for baby girl Tucker....it has meaning, it starts with an A and goes great with Ayla! I will reveal it soon once we have firmly decided.

Other than that our next check-up in July 8th and I will be 19 weeks and 4 days! Halfway there!!

I am going to go do Ayla's treatments and get ready for the rest of the day!

Things are so different so far......

2011-06-25T10:11:00.000-07:00

Before I graduated from High School I had a name picked out for my baby girl. Ayla was so easy to name and I never knew until a few years ago the profound meaning it would have in our lives.

"Oak Tree"

With this pregnancy I really felt like I was having a boy and had a name and everything all picked out. Even though deep down I really longed for a sister for Ayla...and I am so grateful she has one on the way!

But.......I have no idea about a name for this girl........every name I hear-I think they are cute but they don't seem fitting for our second child.

There is a name I like and it has meaning to me but it's taken. My husband also loves it and us agreeing on names is kindoph been tough. I call him old fashioned and he calls me crazy! I like boy names for girls and unique names that you don't hear everyday and he looks at me like i'm crazy..hahah...BUT....I don't want to take someone else's name and that's how it feels.

This child's name has to have meaning though, b/c of the super special meaning Ayla's name has to us. Just hearing a name off tv isn't going to cut it...And for some reason my personality won't let me plan anything else (room, colors, etc.) until I have figured this out....

So Suggestions please......

It's a.........

2011-06-11T07:57:00.000-07:00

Girl!!!

We are very excited and a little surprised about our news!! We had everyone telling us this was a boy and we thought so ourselves. But I have to admit that deep down I wanted Ayla to have a sister at some point. There is something to be said about a "sisters" bond.

With that I know that my husband Larry like all men really long to have a son. Although I'm not sure he's willing to risk having a 3rd wedding to pay for, we could always try again...

We are stumped as far as naming this girl....we had the boy all picked out but I can't decide on a girl name...I had a few in mind just in case...

All of her measurements were perfect and these normal appointments are really beginning to grow on me. We are praying for this little girl's health and believing she will be CF free!

It's so great to call her a "her" instead of Baby all the time....

"Something To Blog About"

2011-05-17T07:13:00.000-07:00

The last few months things have been crazy! I co-chaired our Great Strides walk and was very busy with the planning of that. Which we did awesome and more than tripled our total from last year! And as exciting as all of that is. Something even more exciting has been brewing in our family.......We are going to have another baby!

After a year of trying to get pregnant it happened, and I am now 12 weeks and 2 days (yes I am past 12 weeks!) We have been keeping it hush-hush, basically not posting it on blogger or facebook. And we all know if it's not on facebook it's not official yet (lol).

With my miss-carriage last year I wanted to wait until the first tri-mester was complete to tell people especially Ayla.

We had our 12 week appointment yesterday and I got to hear the best sound in the world, a strong heartbeat! I have really felt a lot of peace that things are going to go smoothly this time but I have to admit on the way to the appointment yesterday I was nervous. When I sat in the exam chair and she placed the doppler on my stomach I just put my head back and prayed. She found it very quickly and let us listen for a few minutes. I just took a huge deep breath and made eye contact with my Dr and she knew exactly what I was feeling. My Dr. and I have been through quite a bit together and I feel fortunate to have her.

Our next appointment is June 13 and we find out the sex!! No I am not one of those people who can just wait to find out and plan a gender neutral nursery....no way! I have to know so I can have everything the way it should be! And we are very excited!!

Ayla has CF and GI clinic @ Shands June 8 so that appointment will be here before I know it! I think they should be pleasantly surprised with her.

So we are very excited and now I can finally blog about what I have wanted to for so long! And you will get to hear all the juicy details of my nausea and vomiting that I have been doing quite a bunch of ( I have even lost weight at my last appt) -no I will spare you details but I have been sick!

So prayers please for this baby and our family. We are longing for a healthy child and a "normal" pregnancy~

~krista

PS. Ayla was very excited and insists on naming the child Kyliegh, Haley, or Lilly (3 of her girlfriends) lol...

A short update....

2011-05-02T08:46:00.000-07:00

So I have been out of the blogging world for a while. Due to a few different things, but mostly being so busy I haven't had time to think.

This Saturday we finished out Great Strides Walk and it was an awesome success!! I was co-chairing the walk and we more than tripled our total from 2010 with $50,000 raised for all with CF!!

All of you CF parents and CF patients reading this I am so happy to be able to say that Destin, FL Great Strides will positively effect you or your child's lives! Isn't is so cool how raising money for your child or yourself touches the lives of so many others??!!

I couldn't be more thrilled with the way the day went, it was such a celebration!!

Ayla Update: She is doing great! We go to clinic in June it has been a few months longer due to scheduling issues but she is doing amazing! No sickness since FEB and eating wonderfully. Can't wait to see what my big girl weighs!!

Thanks to everyone who helped with GS, I had an amazing team of people!!

Krista~

School We Visited......

2011-03-30T06:45:00.000-07:00

I wanted to update you on our day yesterday, we had an appointment to meet with a school at 10. Ayla was excited and mommy was nervous. Mostly because I had heard so many good things about this place that I knew I was going to like it. And what comes after that, was scary!

So we entered the school that has been around for 20+ years, it was clean and very artistically decorated. Each and every space with made up with intentioned items, all serving a purpose.

This school is a Montissori type learning environment and I was pleasantly surprised at the thought that went into each book, puzzle or game brought into this place. There are 4 spaces within the school all working together to give the kids a well-rounded learning environment. By no means is the kind of place that your child will do meaningless activity to pass the hours.

There was even a music room where the kids get together and sing songs and play authentic instruments. The teacher even does Yoga with the kids. The dress code is yoga pants and shirts and for my Ayla, she couldn't be happier about wearing "comfies" all day!

There were 15 kids and 2 teachers, highly educated and very much in love with learning and teaching.

When I asked the teacher about a scenario that has played in my head over and over.... "What if a child is brought to school with a green runny nose, will you call me so I can come get Ayla?" Her response: "No, I will be sending that child home"

I got the sense that this really is a learning environment and not a babysitting service.

The kids learn about being respectful to others and respecting themselves. They learn about being independent and picking up after themselves...if they are thirsty, they get themselves a drink....This will be new for Ayla since I pretty much do it all for her....But a good lesson for her to learn. After all she will have a lot of things in her life that if she doesn't manage-could get out of control.

The teacher told me she had a "couple" spots so I signed Ayla up on spot. For me that was big! I was really impressed by the school and all it had to offer.

I think Ayla will really thrive there and I am actually excited about it! Thank God!!

Visiting Schools.......

2011-03-28T17:46:00.000-07:00

Tomorrow is a day at times I thought would never come....When we got the diagnosis of Cystic Fibrosis (CF) we thought this would never be an option for Ayla. We immediately thought the worst as you do when you get any kind of devastating news.

And for quite a few years CF took over our dreams, thoughts and hopes for our family. We are now on the other side of that, we have learned to live with this disease, we know what to watch for and how to handle it. Getting through this has happened in our own home and controlled environments where we can for the most part dictate what goes on.

As the years have passed Ayla's future is always in the forefront's of our minds. The first of many tough decisions is upon us and we have limped toward a decision..She is turning 4 next week and is eligible for VPK (a program in the state of FL where pre-kindergarten is paid for).

In the past I thought homeschooling might work for Ayla...it would be the best of both worlds for CF and for learning...But as I marinated on that thought I couldn't get peace with it. I have such a social little girl on my hands...whom I don't want to ever have to tell......

" I chose ___________________ because you have C.F."

I don't want her illness to define her, or have her life filled with choices and options that were tailored to C.F. I want her to do things that everyone else said she couldn't, I want her to build lasting relationships with people who support her and lift her up while she is hurting.

So with all that said....we have decided to visit some schools this week, VPK certificates are going to be issued next week and the mass public will be out choosing the place for their kids and I need to have my options available.

I have one in mind that I think may be "it"- when I called the school today the director said she too takes digestive enzymes and that seemed like a glimmer of hope that I'm moving in the right direction. This program is 5 days a week from 830-12 (EEK!) I am so nervous about actually signing the forms, this is such a huge decision.

My fears are many but mostly about her becoming ill from getting the usual "bugs" that every child gets when first put into a program. About those "bugs" turning into something else and causing lung problems that until thus far and been non-existent. And the fear of the guilt that these repercussions could have on me.

I have to make a decision either to make all choices BECAUSE of CF or in SPITE of CF....

So prayers are appreciated as we make this transition and for Ayla that she adjusts and enjoys this experience abundantly...

I will follow up with the school of our choosing and my list of "likes" about it.....

~krista

Lia Sophia Party A "Success"

2011-03-16T08:55:00.000-07:00

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.......

2011-03-14T14:52:00.000-07:00

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

CF Awareness Video

2011-02-28T17:46:00.000-08:00

Nervous Nelly...

2011-02-22T18:41:00.000-08:00

Ok, so I have been pretty bad about blogging lately. I have had so much going on lately that I haven't had much free time. To be honest, I haven't had much of a desire to write.

The other day I said the reason I hadn't written was because I haven't had anything interesting to write about.....but that's not entirely true...

A few weeks ago we had our kickoff luncheon for 2011 Great Strides. I am co-chairing the walk this year with 2 other amazing ladies! I was under the impression that I would not have to speak at this event. I thought it was going to be a learning experience for next years kickoff for me....well needless to say when I got to the event I found out I would be speaking for a few minutes about how CF has affected Ayla's life.

My mind immediately went into a tailspin, and my stomach started turning. What would I say? How would I put the last 3 years of living with CF into 2-3 minutes?

Our representative from the C.F.F. opened up the meeting and introduced us and we each got our turn to share our stories. I was the second person to go...I was getting so nervous and emotional listening to the stories. I was actually fearful that I would be crying before it was my turn.

I pulled it together when my name was called. I spoke about Ayla, her diagnosis, her issues, her triumphs and her personality. I thanked everyone for being there, talked about the science and how much a new enzyme (Zenpep) has changed Ayla's life. I ended with the reason we were all there, which was to raise money to save our kids. To get the researchers and scientists the funding that they so desperately need to make "Great Strides" toward a cure for C.F.

After it was all over I cleaned my plate..which had gone cold from my inability to eat due to nervousness. I was really glad that I spoke and felt a sense of pride after the whole thing was over.
The kickoff was such a great way to get people excited about Great Strides and to give CF a face and name.

I had so many people there to support me and who are signed up to do all kind's of things to help us this year. I am so thankful to those people, you know who you are!

I can't wait to see what Ayla's Army accomplishes in 2011!!

We have our first event on Sat 2.26 2nd Annual Rummage Sale for CF, and I will let you know how we do this year!

Krisat-

Great Strides 2011....A lot is happening!!

2011-01-30T07:55:00.000-08:00

The schedule for fundraising over the next few months is really beginning to fill up! Which is such a blessing. It's amazing to me the willingness of people to get involved with our cause and go above and beyond what I would imagine.

In December I was worried about how I would get everyone excited about fundraising this year. I was worried that I myself wouldn't be the motivator the my team needed. But January came around and Ayla's Army is off with a running start!

These are the events we already have "on the books" for 2011:

Great Strides Kickoff Luncheon Bonefish Grill 2//8

Prize Drawing Ticket Sales

2nd Annual Rummage Sale for CF 2/26

1st Annual "Steak & Take" March

2nd Annual "Party with A Cause" Schooner's Restaurant

2011 Ayla's Army TShirt Sales -ongoing

This year is going to be a great year for raising money, I am so excited about the leaps and bounds Scientists and Researchers have made in 2010....Let's hope 2011 brings many more....Great Strides is a way for us to do our part.

I get really excited thinking about the possibility that we could be so close to changing C.F. to mean Cure Found!

Thanks to everyone has donated a prize, reserved a T shirt, RSVP's to an event, donated money, joined my team, and supported us so far.

I can't wait to see what our total is this year!!

The Destin Walk is April 30th-Contact me to get involved!!

-krista

It's the Season for Fundraising and Weddings and Birthdays!!

2011-01-14T19:23:00.000-08:00

So this time of year has become a time that I look forward to.. It's a new year with a new start, Great Strides is in April and we are in full-swing! I am working with an awesome team to make this year's walk one to remember! I am really excited about all my ideas for this year. I am going to try and do the same thing's I did last year and some new!

Rummage Sale to benefit the Cystic Fibrosis Foundation (Last year we raised 1200$)
T Shirt Sales (going on now!)
5 ways to raise $500 packets for my team members!
Prize Drawing Tickets (with some amazing prizes)
Jeans for Genes

Also in April my Best Friend is getting married and I am very involved in the planning process! I am having lots of fun and can't wait to see the finished product! I am loving being busy and certainly have lots to do. Ayla is going to be the flower girl, so that's exciting! Any excuse to go dress shopping works for me!
Did I forget to mention Ayla is turning 4 in April too? YES I said 4, I can't believe how big she is!! She is doing great and is so entertaining.

Contact me for a shirt! They are really cute!! 20$

~krista

CF & Liver Clinic Updates Jan 2010

2011-01-08T19:56:00.000-08:00

We started the morning off with the Liver Clinic @ Shands. Ayla's Dr. is so good with her, she is the best little patient ever!

This was the first appointment in years where I haven't complained about some sort of tummy issue, the Dr. pointed that out to me! I hadn't realized until he told me, what great news!!
Her labs from the previous visit were running along the same lines of "almost normal" and for someone with Billiary Attresia that's normal and good.
We then went on to talk about something that's always looming over me...Liver transplant. Her Dr. said that you never know based on a child at this age if they will need a transplant in their lives. You can't judge based on how well she's doing now. He could say he was a 100% sure she would NOT need one in 5 years, and he could say with CERTAINTY that she would NOT need one in 10.
He then went on to say those patients with B.A. who don't ever need one, often have blood work and files similar to Ayla's. He also told me that the older a person is the better for transplant ( i didn't know that). All we can do is pray! He also didn't need to draw labs so this made Ayla super happy!

We went to Cracker Barrel for lunch...the most fattening place around for Ayla...to kill some time...

We then had CF clinic ....they were so happy about her weight. She had put on about a pound and a quarter since mid October! And went from 50th percentile (where she's been for years) to 53rd!! They listened to her and she sounded great! She practiced her PFT's and did great with those. Then came the dreaded Culture....wow.....with age this is just getting worse!! It took 2 nurses and my mom and I to hold Ayla down...I absolutely hated it!! I will be so glad when she can bring up phlegm (?) on her own!
She smashed her finger in the door and screamed bloody murder throughout the clinic. We had Dr's running in to tend to her little finger...so cute...My child never forgets ANYTHING like her mother and told her Dr she wanted to go to the "treasure box" and the sweet Dr let her have 2 toys since she had such a traumatic day!

We drove home and Ayla slept...It was a stormy day....but the appointments were uneventful....and for us...that is BEST!!

Thanks for keeping Ayla in your prayers...she is really thriving!!

2011 New Year, New Resolutions....

2010-12-31T07:54:00.000-08:00

They are on every one's minds this time of year. Pondering over how we spent the last year and what we want to change in the next. Ayla has had a pretty great year health wise, she only had 1 hospital stay due to a blockage in Jan 2010. Other than that no Pseudo cultures or IV anti-biotics, for a CF'er that's something to celebrate!!

And her liver condition (Billiary Attresia) hasn't reared it's head either..she has continued to thrive from her corrective surgery almost 4 years ago. Labs continue to improve and weight is being gained at a wonderful rate! She is now 34.5 lbs!! I can remember her being 9 lbs at three months and never imagining she would be so healthy...Her butt is even starting to pooch-out more and there has been some cottage cheese spotted on those legs!!

We are beyond grateful to God for the miracle and blessing she is!!

As far as our family is concerned 2010 will always be thought of with some sadness, after loosing a child to a miss-carriage in May of this year. But a lot has happened and I have come to terms with that. We know we will meet that child in heaven some day. We are hoping we will be blessed again with another child, and are waiting on God's timing.

Our business has thrived this year and expanded, in a time when success is hard to measure. My husband has worked so very hard to provide for us and to allow me to stay home-we are so blessed this is an option for us!

As far as Goals for 2011 are concerned, I have a few:

- I want to be more organized in our home and business (this is on every one's list I'm sure!)

- I want to start scrap booking, I realized I have all of my beautiful photos on the computer and no-where else!

- I'll just throw the exercise one in here for kicks, since I'm hoping 2011 will bring a desire for this!

- I want to take time to read the bible more regularly (I think that's more do-able than saying I want to read it through!)

I could go on and on....But I guess the most important goal in life is to never stop improving yourself in whatever role(s) you play....Play them well....and for ME thats: Wife, Mom, Child, Sister, Friend, Nurse, Cook, Maid, Counselor, Book-keeper, Writer and Coach!

~So Goodbye 2010 and Hello 2011~

~krista

Christmas 2010....finally

2010-12-31T06:33:00.000-08:00

So I am a little late doing this post...but oh well. Better late than never I suppose. Christmas this year was awesome. Larry and I decided this year to really make this one about others and it was so much fun doing so. I made home-made gifts for family and Ayla even painted ornaments for everyone.

Ayla had an amazing time opening gifts, this was the first year she could really get into all the presents on her own and she was so into all of it! She was beyond blessed this year and we even had to go through her toys and get a few bags together to donate so we would have room for ALL the new ones!

It was an awesome Christmas Day, we made so many memories and were so grateful for everything. Larry got me a NOOK Color which is awesome and he got a EVO phone-that he has still not put down!!

Merry Christmas Everyone!

~krista

Indoor Holiday Fun!

2010-12-20T19:46:00.000-08:00

I've been trying to keep Ayla busy since she's had this cold. Since we can't go and do things and she missed 2 play dates we needed some activities that she would enjoy inside.

*sorry these pics aren't great quality, they were from my phone*

Ayla is so into Christmas lights this year, we have been to this light display near our home multiple times in the last few days. She really pays attention to Nativity scenes...this picture shows just how much! She made a nativity scene out of her babies and stuffed animals! So very sweet!!

I picked up a few ceramic ornaments from the craft store, I figured she would like to paint some and she could make one this year instead of doing the Hallmark thing! She LOVED it, we went back to the store the next day and got about 10 more-so we are giving them to all kinds of people. She even made one for her pediatrician-so sweet!

The next thing we did was pick up a Gingerbread House to put together. When we got started on it today I realized that I had forgotten how hard these are to do. Just getting it to stand up was tough, she didn't get to help much with construction but design was all her!

We are still planning on having a Christmas baking day with my mom (Nana) so that will be fun!

I am loving all of these Christmas Traditions we are making...

I'm getting really excited about Christmas, I have to wrap everything and finish one more of my gifts I have made this year for family. Can't wait to get some things under the tree and looking forward to the last night of finding a new and exciting place for "John" our Elf on the Shelf, Fan or Curtain to perch each day!

~krista

2011 Great Strides T's

2010-12-15T18:58:00.000-08:00

Great Strides is Just around the Corner!!

Contact: Andy@advisorsmarketing.com for great deals on your Great Strides T's

Taking orders January 1, 2011

We decided to do Purple-since it's the color associated with CF, added the rose and year

Customization available/ adult and kids sizes

Most likely $20 adults $15 kids

The Hunter's Orange was my husband's idea! This is more masculine of the 2

Customization available/ adult and kids sizes

Most likely $20 adults $15 kids

I just love these!!

-krista

Ayla's Message from the North Pole!!

2010-12-14T15:01:00.000-08:00

Click Here to see what Santa had to say to Ayla!

She didn't really react as much I thought she would. She was very distracted and didn't think it was that interesting. Ha! She never ceases to surprise me!!

~Merry Christmas Everyone~

cheap entertainment!

2010-12-11T17:13:00.001-08:00

Published with Blogger-droid v1.6.5

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

2010-12-07T14:06:00.000-08:00

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

Thanksgiving has passed.....but I'm still thankful!!

2010-12-06T13:41:00.000-08:00

This season not only brings Holiday stress but also a LOT of germs! Many of my family and friends have been catching all kinds of bugs and my little Ayla..is going strong...praise the LORD!!

We have even been exposed to these people and have been so blessed that she has stayed healthy!

The only complaints we are hearing from her lately are mostly about Christmas Lights- that we should have more on our house!

~krista

Holiday Stressors!!

2010-12-01T08:08:00.000-08:00

It seems like this time of year everyone is trying to be full of "Holiday-Cheer" but tend to be more full of "Holiday-Stress!"

So many of my friends and family are experiencing so much worry over Christmas and all the spending that comes along with this time of year. It's more difficult to cover your existing monthly expenses and fund your families "most" memorable Christmas ever, right?!

I know that our family is no exception to this...my husband who owns his own business (and is the sole bacon-bringer) is really feeling the crunch...His customers are dealing with the same problems and in turn don't pay their bills quite often in the month of December. Which makes life tough this time of year.

We have decided to scale back A LOT this year. I am going to be making most of the gifts I give to my family and Larry and I decided we really don't need anything. After getting a MAC last year- I'm still riding that one! Ayla's Christmas will still be great, I will just be bargain shopping more than previous years.

Hopefully we can all find ways to enjoy this time of year and really take in all it has to offer. It's not so much about gift giving on Dec 25th as it is about appreciating everything we already have. I don't think it's a coincidence that God put Thanksgiving a month before Christmas- I think he wanted to give us a hint about what we should be doing this Holiday Season!

So try to put down your lists and give yourselves permission to just do what you can this year and no more!

I doubt people will mind as much as you think they will...

~krista

Top 10 Things I'm Thankful For 2010!

2010-11-25T06:23:00.000-08:00

Wanted to do this again this year!! So Hard to Narrow it down to 10!!

(In no particular order)

1.) The health of my family

2.) A roof over my head and more "things" than I deserve

3.) Old friends and new

4.) Supportive people in my life

5.) A great church

6.) Wonderful physicians @ UF

7.) New family members

8.) The hardest working Husband ever

9.) The blessing that Ayla is to me

10.) Vertex trials for VX770 & 809

Thank You Lord for Everything You Have given me!!

~Krista

The Yellow Balloon-A Poem For My Baby

2010-11-24T10:11:00.000-08:00

I will free a yellow balloon for you....

This balloon shall be yellow not pink or blue....

I do this to memorialize the day you would have arrived.....

I do this to remember the way you would have touched our lives....

I will free a yellow balloon for me....

From your home in heaven this balloon you will see....

You will know each year when I release it into the air....

That I'm thinking of you and the times we could have shared....

I will free a yellow balloon for us and the fun we would have had....

Mommy misses you and it still makes me sad....

On this Thanksgiving's eve I remember the joy you brought to your family...

If even for a moment, it was worth it-to have you there with me....

Happy Would Be Birthday Baby Love Mommy.....

Ayla had to have a balloon of her own!

Mommy & Ayla

Our Balloon for Baby...

Off It went...to heaven..

This idea came from a comment on a Blog post I did right after my miscarriage. I loved the idea then and now after actually doing it today- I loved it even more!

It was actually something I could do-action...instead of just talking about it.

It was a great way to start out the day!

And later today I get to meet my Nephew Cohen for the first time (ironic, huh?)

~Krista

Join Us on Cystic Life!!

2010-11-15T12:41:00.000-08:00

To join this site you don't have to have a child with CF or have CF yourself....you just have to know someone who has it.....So if you know Ayla-show your support and join this site....You can learn more about her condition and keep up with what's going on in the CF community...

Thanks in advance!!

www.cysticlife.org

November......

2010-11-11T06:18:00.000-08:00

This month has a lot of things happening....Ayla started her new playtime group twice a week that she is really enjoying and mommy is to-it's nice to have a day that I can plan to do things on a regular basis.

It also brings the beginnings of FLU season, Ayla has gotten her FLU shot but she insists she go with me today to get mine. She wants to see if it will hurt she says...

Ayla has a slight runny nose, its clear and not getting worse-so I'm hoping she will kick it on her own. If not we will be off to the Dr.

My sister is coming down with her brand new baby Cohen and the rest of the family for Turkey Day. That will be nice. This baby has been different in the sense that I have always been present to welcome them into the world and this time I haven't even gotten to meet him yet!! He will be about a month old when I do.

My husband is enjoying hunting season, he has a camp with some family and friends in AL-and was able to buy a camper for our family. It was nice of him to find a way to take the whole family with him when he goes. We are going with him this weekend!

That's pretty much all that's happening with us.....haven't had much to post about lately...on the CFside.. which I am grateful for!!

I am trying to think about Christmas lists and decorating for that...This year is going to be so fun-Ayla's at such a great age to enjoy the holidays.

I hope everyone enjoys their Thanksgiving Holiday!! We have so much to be thankful for this year!!

~krista

Happy Halloween!

2010-11-01T07:09:00.000-07:00

Fairy Wings!

Abby Cadabby!

We had a great time Halloween. Our local community center had a "Fairy Tale" luncheon on Saturday. All the disney characters were there..Ayla really enjoyed getting her picture taken with everyone!

Ayla and Captain Hook!

Ayla and some of her Cousins

That evening we went over to family's house and had a chili cookout, firepit and a hayriding trick or treat for the kiddies. It was such a great idea b/c it took us around to the neighborhoods and brought us back. We should definiteley do that every year! Ayla really enjoyed herself and was so much fun to watch. She wanted to ring every door bell at every house...she asked me probably 50 times if she could ring the next one...LOL-kids!

Riding her bike around the cul-de-sac

Ayla and Daddy

Trick or Treat!

Yum!!

What a difference a little more Zenpep can make!!

2010-10-25T15:39:00.000-07:00

So when we were at Clinic a couple of weeks ago I was telling the Dr's about Ayla's tummy pains and frequent messy stools...they wanted to do a stool study to rule out c-diff and when they did the nutritionist recommended breaking one of the Zenpep 10's I had in half to see if that helped...

Well it really has helped. It's amazing what a small change in enzymes does to help! She has had significantly less belly pain and almost perfect stools averaging 2 per day!

Thank God for Zenpep!

~krista

Lab Update from Cdiff Culture

2010-10-17T17:35:00.001-07:00

Negative!! yay!!!

This song is amazing! Almost a mirror image of our lives awaiting Ayla's birth...

2010-10-15T08:17:00.000-07:00

there was never a doubt baby girl! Im gonna show you what it means to be loved.

Thanks to blog Nathan's Fight for posting this today, really blessed me!!

~krista

Lab Update from GI

2010-10-14T13:53:00.001-07:00

I am so blessed to report that Ayla's GI dr called just now and her levels have returned to normal! A decrease in levels would NEVER happen if growths were present in the liver!! Praise the lord thank you for hearing a mother's cry!!