"Everyone needs a place to call their own"

Friday, December 31, 2010

2011 New Year, New Resolutions....

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~


Christmas 2010....finally

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!


Monday, December 20, 2010

Indoor Holiday Fun!

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!


Wednesday, December 15, 2010

2011 Great Strides T's

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!! 


Tuesday, December 14, 2010

Ayla's Message from the North Pole!!

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~

Saturday, December 11, 2010

Tuesday, December 7, 2010

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

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.  


Monday, December 6, 2010

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

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! 


Wednesday, December 1, 2010

Holiday Stressors!!

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...


Thursday, November 25, 2010

Top 10 Things I'm Thankful For 2010!

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!!


Wednesday, November 24, 2010

The Yellow Balloon-A Poem For My Baby

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?)


Monday, November 15, 2010

Join Us on Cystic Life!!

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!!

Thursday, November 11, 2010


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!!


Monday, November 1, 2010

Happy Halloween!

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!


Monday, October 25, 2010

What a difference a little more Zenpep can make!!

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!


Friday, October 15, 2010

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

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!!


Thursday, October 14, 2010

Lab Update from GI

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!!

Wednesday, October 13, 2010

CF and GI Clinic Updates

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

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

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

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

*Again we are praying against this*

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

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

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

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

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

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

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


Sunday, October 10, 2010

Our Weekend!

We had a great weekend! We spent the day on Saturday at our local Pumpkin Patch....Ayla enjoyed the petting zoo, bouncy house and picking out our pumpkins!

After that Daddy took us shopping....Ayla needed some warmer clothes for the year.  It was fun, but boy shopping for girls is fun and expensive!! She got so many cute things!!

I even got a new pair of running shoes for 30$ on clearance!!  Larry even splurged and actually bought himself a few things! (He never does that!!)

We came home and Larry and Ayla had some father daughter time while me and my friend Brittney went out for Sushi and a movie...It was so much fun!!

Sunday brought a great church service, Ayla actually wanted to go in children's church and had a blast!!  After that we went to lunch with some family and came home and had a relaxing day!

It was such a nice weekend, now to get geared up for the week.  We have Clinic on wed in Gainesville!

And I'm starting an exercise plan called Couch to 5k tomorrow.  Those of you who know me need to make me accountable!! It designed to gradually work you up to running a 5k in 2 months!  I am actually going to wake up before everyone in my house to do this....It's the only time in the day I routinely have someone to watch Ayla-bear!

So wish me luck and prayers for good Clinic appointments!


Thursday, October 7, 2010

Ayla riding her bike

Disney Live!!!

We are going to see Disney Live tomorrow!  Ayla is so excited, with her being sick we have been cooped up in this house too long!!

It's going to be a great day for her and for Mommy...too bad Daddy has to work :0(  He's been sick too and is playing catch-up!

I will have pics and video of our big day!!


Tuesday, October 5, 2010

A Sticky CF Cough.....

Well I hate to say it but Ayla has a CF cough....she has not responded well to the 2 different antibiotics her pediatrician prescribed and this is day 12 of dealing with this.

Her nose is less runny but I can still suck out (gross sorry) green gobs of mucus.  Her cough is still very productive and she's even gagging on the mucus that comes up.  Im trying to get her to spit but she hasn't figured that out yet.

I have called in to the CF clinic and am awaiting a call from them to see what they want to do.  We have clinic next week with GI and CF so we will get a full rundown of this then.

My usual partner to go on our clinic trips with us (Nana) is going to be with my sister who's due to have my nephew Cohen anytime now, so we have to figure that out.  But no biggie, I'm not opposed to going by myself.  Her daddy owns his own business and comes with us at times but with me being a stay at home mom, we can't afford him to take off much!  ~We love you Larry~

Hoping I get the call soon from Shands to let me know what we should do about this sticky cough~


Thursday, September 30, 2010


Well I am another year older, not much has changed this past year.  26 had it's ups and downs, I had some hard times and some great times.  But through it all I know-I have so much to be thankful for in my life....

  • A loving husband and family 
  • A beautiful little girl who is my very own miracle
  • A Roof over my head among so many other of life's necessities
  • Great friends who are always there for me
I am so excited to see what this new year of my life will bring...here's to you 27!

Tuesday, September 28, 2010

A Child's Paradise

I have started to go to MOPS recently.  I have so much fun and really enjoy the time with the other ladies.  In turn Ayla gets to play in this amazing facility for 3 hours twice a month.  She is always leery about going to children's church or other things similar to that but she LOVES this place!!  She's been twice and when I pick her up she's always hiding from me!!

Upon exiting the kids have a choice of walking down with parents or sliding down an enormous slide just for them.  Ayla wanted to slide multiple times today when we left.

I have always been skeptical about letting Ayla participate in these kind of group play dates inside, because of the germs and CF.. But since she's gotten a little older and I know she's not going to put any little thing in her mouth I feel more confident.  I'm even considering letting her go to a one day a week program at this church.
When she asked to go "Like all the other kids" my heart melted....why should I let CF keep her from this?  I'll just leave it up to prayer and good judgement!

We will see how it goes during COLD SEASON (EEK!!) I'm sure I'll set something up with the coordinators to call me if there is a sick child in her class and I'll remove her for that day.

But if you know Ayla....you know she is SO-CIAL!!! And I really think she needs this and apparently she agrees!


Monday, September 27, 2010

Do you have "Attractive" Genes?

I was watching a television series on Showtime today.  During the series this woman was distraught over the fact that her husband had left her and she desperately wanted more children.  She was looking for another man to "help" her have another baby and began asking him a series of questions about his family history....."do you have any history of....." Celiac Disease, Heart Disease, and she spouted off a few other common problems....but last she said...Cystic Fibrosis.
I guess if the man would have said yes to any of those she would have rescinded her offer.  Anytime I hear about Cystic Fibrosis in the media especially on television when it's not for awareness purposes I always feel like it's in a negative light.
Like that woman wouldn't have wanted a child with Cystic Fibrosis.  Now I know this is all fictional in this case but there are people out there who really feel this way.  And I suppose there is nothing wrong with everyone having an opinion, but I take offense when I have a child with Cystic Fibrosis and others imply that they would just assume not pro-create if CF was a possibility.
I know that for some Cyster's or families of carriers they chose not to have children.  But for me and my family we are walking on the path that was set out for us.  And Cystic Fibrosis is part of the foundation.  Of course if we could have we would have prevented Ayla having CF.  But the truth is we can't.  But we don't want CF or any other "genetic" trait to prevent our family from going where it needs to go.  I don't want CF to prevent Ayla from having a sibling.
I guess this really hit a nerve with me today...I felt so offended when the woman in this tv show said that.   Those people who have kids with special needs or have special needs themselves can't possibly make others understand how it is to live life.
We all know it sucks to have CF, it sucks to be a carrier of CF....But it sucks even worse to be a parent of a child with CF and have the media display the disease in this way..Like it's a choice...you can't genetically design your children to be what you want them to be.  And CF is not a removable part of our lives.  Without CF we wouldn't have Ayla....without Ayla we wouldn't have CF, they are a package that come hand in hand.
This post may not portray the way everyone dealing with CF feels but it's how I feel and I felt I had to speak my mind.
I wonder how it makes other CF families feel when they see CF in the media,being portrayed in a negative way?


Friday, September 24, 2010

My house is suffering most from my COLD....

This is a picture of part of my living room.  I picked this space to show you because it's the cleanest...It's pretty sad...I am hoping for new found energy when I rise tomorrow morning..and the desire to clean the crap out of this place!!
Let's just say this cold needs to get gone!!

Thursday, September 23, 2010

I'm Still here....

This is the sick little girl......still a cutie pie..

Well, things have been crazy busy lately.  We have been moving, traveling, and now we are sick!  I took Ayla to the Dr. today to get this cold checked out.  We don't live near our CF center so I take her to Pediatrician and when needed make the trip.  So hopefully this cold will be gone soon.

We have our next GI and Cf clinics October 13 @ UF.  Her Dr. said today that she is in the 50th% for height and weight!  Considering all she's been through-he was very impressed!  He said that if her growth continues this trend she will be 5.4' and 128 lb's....I just smile when I think of those numbers...hard to believe she will grow into a woman only 2 feet 2 inches from now...shes 3 feet 2 inches right now..tall?  I think so!!

She's doing well, we are working on getting her into a Mother's Day out program at a local church for social interaction and more activity one day a week.  Hopefully that works out soon, I go to MOPS at this church and she had an amazing time during her "playtime."

School is going ok......we have been so busy lately that we haven't had many "formal" lessons...or what I would consider a "lesson" but we have been trying to notice the world around us...talk about things and read books!!  I'm going to try to get better at it...but isn't that what school should be at this age??? Playtime!!

So....that's about all that's going on with us...my sister over at the Gifford Blog is about to POP with her 3rd boy Cohen Miles....we can't wait to meet him! I'm sad I will not be there for his birth...I have been there for her other children's birthdays...but not this one... BOO

That's the update...I will try to get these done more often...no promises though ;0)


Monday, September 6, 2010

School's In!

Tomorrow we are starting SCHOOL!!! 

Home-School that is!! Ayla has been asking and asking "When am I gonna start school?"  With the move our first day of school was postponed a bit!  She's been so excited-it's so cute!

Our first week's lesson is based around the book: "Jessie Bear: What Will You Wear?" I have gotten some helpful ideas from BFIAR & other mom's and came up with some fun activities to go with this book.
  • I've printed out a paper doll (bear) with little clothes that she can color and and dress her "Jessie-Bear"
  • In the book the parent's show love to Jessie-Bear in different ways, we are going to practice showing love to one another
  • Jessie-Bear also keeps his room tidy and toys put away when he goes to sleep at night...we are going to mention that too.. LOL
  • We're going to eat Teddy Grahams for snack
  • Ayla's going to practice picking out clothes for the day (maybe they will match??)
  • We're going to work on our bible verse for the week (very short and goes along with our theme)
That's just a few of the fun things were going to try throughout the week!  But it's mostly going to be enjoying the books and doing an activity (if she wants),playing outside and trying to point things out that she can associate with the book.

Mommy's excited!!!

I'll let you know how this week goes!!

And.....finally....The ROOM!!
Craigslist $75
My Desk Craigslist 60$ painted by me, chair yard sale 15$
Ayla's Desk Craigslist $20
Bookshelf Antique (painting Green) Easel: Amazon $40
One last look-complete with Ayla and her bed-head!!

Let the Fun Begin!!!