"Everyone needs a place to call their own"

Monday, July 25, 2011

Living Images Appointment

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!


Disney Bound

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!


Thursday, July 21, 2011

Update: Decision

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!


Tuesday, July 19, 2011

Decisions, Decisions


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:

  • 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

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

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

  • 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!!

Thursday, July 14, 2011

Our little Architect

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

Wednesday, July 13, 2011


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)


Tuesday, July 12, 2011

Treating Psuedomonas and how it's going...

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

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

This is what our day looks like:

Wake up
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

Daytime Meds


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


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.


Monday, July 11, 2011

Cysts in Lungs? What!!!!

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

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

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

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

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

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

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

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


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

Sunday, July 10, 2011

Wednesday, July 6, 2011

Tuesday, July 5, 2011

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

we grew


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

what is this? CLICK HERE

Update on Ayla

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

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

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

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

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